We Interrupt Your Regularly Scheduled Programming...

As a disclaimer for the beginning of this post - this is not an update on my cardiac health. That guy is still going without any reported problems.

When I first started this blog it was all about letting people in on the mystery of my medical condition and how it ran my life. That may seem a little morbid but that is not how I mean it. It did literally run my life; from what I could eat, every day medication I could take, choices I could make, to futures I had to foresee like Dr Strange. Not only was I trying to raise a little awareness about living, and possibly dying, with a chronic illness, I was trying to process the process. As an added bonus, letting people into what chronic illness was like helped us raise a lot of money for the British Heart Foundation together.

The trip to Venice and Rome didn't hurt either.

One of the most recent posts I did - a long time ago now - was lifting the last curtain on the stage for me. When I started thinking about what I was trying to do with this I realised I was still censoring the story, I was still cleaning up the details and I thought it was to keep things for myself but in reality if I wanted to really raise awareness then I need to take you behind the scenes - adult nappies and all. I think I achieved that, even admitting some feelings and reflecting on what I hadn't thought of before. All in the name of adding, "but it is bloody hard sometimes", to the end of the well-worn phrase: "It's all I know".

What I didn't really think about until recently was that it is easy to take the story I've been telling and thinking, "okay, well that's a lot to be getting on with", and not think of it any further than that. However it's only one camera's view. That camera follows me from the Royal Infirmary to the Golden Jubilee; from outpatients to inpatients; from ward to operating room and back. It might even follow me on the trains and buses and occasional taxi or friend's car, it might even take a look in the bathroom or bedroom or fridge to "get the whole picture", it could look back into teenage years and forward into the possible future with a harp in the background. But that camera is only interested in one subject - old faithful. What I've never really done was let you follow the other documentary crews documenting everything else and there is one very good reason for that: there was only one camera rolling.

One thing they don't teach you when you're living with a chronic illness - especially a congenital one - is how to make it just a pillar of who you are and not the whole damn foundation, decor and curb appeal. I was diagnosed at three months old and this is something I learned in the past couple of years, all on my lonesome. 

I came here to tell you the story of how I set other cameras rolling.

However, it's going to be one of those, "Did I ever tell you kids how I met your mother?" stories. I have to go back ten seasons so that you really understand. There's going to be side-quests, maths and probably rubbish jokes. No yellow umbrella though. 

I will tell you this - who knew that a rant about a folio society book could change your life?

But that's way in season five, I'll get to that.

Quite unplanned, this starts pretty much right in the middle of 2016, just before my last (and successful) surgery.

Cue the harp.

I genuinely don't remember what made me do it, I don't even remember what made me think of it, but in 2016 I started volunteering in an Oxfam bookshop on Nicolson Street in Edinburgh. But I do know what led up to it; fucking depression. That bitch. I have thought about it over and over and I'm sure it sounds like a control thing. I had found out I needed this operation after years of complaining of pain and giving up, then suddenly they're not getting anywhere with fixing it and - let's be real - I was fading away. I wasn't gone, nowhere near, but I was flickering. It would be natural to go out there and find a distraction. It would be. But that wasn't it at all.

Listen, you probably work nine AM to five PM, at least. To which, you have to add in travel time, getting up early, mental energy for it - especially if you don't like your job or your colleagues. The dream would be never to work again, right? You sit in the pub and complain; or you go out on the weekend and the first person to mention work is dead to you until next time because, fuck you, it's Saturday, Debra, drink up and shut up. Some of you maybe even put the lottery on every week or month and hope that your ticket will be the winning one, letting you never have to go back.

Sounds like hell.

However...

Hear me out, kids. Imagine you can't. You wake up tomorrow and you can't go to work, you can't support yourself financially. You have probably read or heard stories about people who went through just that scenario - unexpected stroke at twenty-three, road accident or night out gone wrong - and I bet you thought, "Oh, I couldn't imagine!" Well, the closest you could possibly identify with is leaving school, if you're not going straight to college or a job then you go from interacting with thirty to a hundred people five days a week, for at least eleven years ... to nobody. You go from an early morning, a structured day and mealtimes, expectations and drama to having to double-check what day it is. You do think that's all you want until you have it.

I went from high school to a year of "fuck yeah, no school", to about four years of college, to "oh shit, I need an operation so I'll put off going to uni. That won't take long, right?". 

Now I have to pause here for a side-quest.

One thing I knew since I was fourteen was that I had depression. I don't know when I realised what it was called, I don't know how long after that I realised it was a mental health problem and not my fault but I do know that I have only felt somewhat in the driver's seat rather than being dragged along caught in the passenger side door since this year. I'm thirty-three. Think about that. I've had depression for nineteen years, longer than I lived without it, and only this year have I felt less like I was being held at gunpoint. And yet it never occurred to me that it was a part of who I was. To a lot of people I was nothing but "the girl with the heart condition"; when I was growing up I was "Sharon's youngest" or "Nicole's wee sister". But what no one - not even me - realised was that the girl with the heart condition had a mental health problem too, that it had just as much control over my life as the other did. In fact, it was ruining it before it had even really began. I was self-harming inside and out; I stopped attacking the outside in 2015 after a weird series of events that I don't think needs to be explored here, and I fight to stop attacking the inside to this day.

"Taylor, this is all very interesting but when are we getting back to the main plot?"

Plot twist: this is the main plot line. Tricked ya.

In early 2016 I had been out of college for three years, I was still going through the process of (what would be) three attempts to save my life and my mental health was feeling the pressure. Not because I was probably going to die, not because I didn't have a job or my own flat, not because I hadn't gone to university yet or because I wasn't always sure what day of the week it was. It was because over the previous three years, since I was told that I needed the surgery, I had started sleeping.

Mini side-quest alert. For reals this time.

I've had insomnia since I was fourteen or fifteen too. Wait, insomnia and depression came along at the same time? I'm sure there was no connection. Nope. But, by 2013 I had it down pat. I would spend two days (roughly forty hours) awake and then sleep for ten or twelve, reluctantly. I never enjoyed them, I just enjoyed waking up and not being exhausted, having stomach problems or a headache. 

Back on the main quest; that wasn't so bad, right?

Slowly, I had started sleeping every single night. Which was a big red flag for me and I was very aware that if that was happening then I was not okay, physically. But then, I already knew that. So I let myself sleep, in the hope that it would help me last longer until the Golden Jubilee figured out what the next plan was. So I was sleeping a few hours every night, and then longer... and then longer. I was sleeping ten hours at night. Okay, you gotta do what you gotta do. But then I would find my eyes closing during the day, then my head started to nod, then an hour or two nap would sneak up on me. And before I knew it I was sleeping twice a day, sometimes up to a total of eighteen hours, and I still felt like I was fading away.

I was very used to being up all night and asleep all day anyway, I was used to speaking to my mum twice a day and not seeing or speaking to anyone else for weeks at a time. I wrote stories, played games, watched TV and read books, quite happy. Or at least I had convinced myself that I was happy.

Spoilers: I was not happy.

Not to hammer the point home too hard but, to help you understand - when I say that the hospital never bothered me, part of it was that it was just normal for me and another was that I really never really gave a shit about surviving. I had accepted that it was going to happen anyway and what did it matter. I cared about funeral costs, NHS costs, the time and energy the people involved put in, but beyond that they'd have been doing me a favour.

So, add that to the fact that I was slowly becoming less and less able to stay awake, to be alert and even get through the few pastimes that I had and speak to the one or two people I spoke to daily. 

In May that year I turned twenty-five and wondered if it would be my last. It was summer and I had barely seen any sun... or moon... or anything. I could barely even think to look at the calendar and find out what day it was. It wasn't October yet, that's all I knew. I'd know when it was October 18th.

I do remember thinking, "I need a reason to get up in the morning and be around people. I need to know what day it is."

That is essentially why I started volunteering at Oxfam: I need to be a part of existence until I probably leave it. I chose a bookshop, not really because it was something I liked - that was a bonus - but because of my life-long phobia. 

Koumpounophobia, if you didn't know then google it, and come back. When you're finished laughing and you do come back, remember than Steve Jobs had it too and it's the reason why Apple products are mostly touchscreen and changed the direction of our technology. I'll try not to focus on how much money Steve Jobs had and how much I don't. The bastard. He got rich, I just start shaking and wheezing whenever a button-down is in touching distance.

But hey, at least I'm consistent; rare heart condition, rare phobia, rare chronic pain condition... Oh, there's a season eight spoiler. More on that later.

Anyway, I decided to avoid main charity shops due to that or my natural choice would have been the British Heart Foundation. As it was, five doors down from the BHF, Oxfam's bookshop needed volunteers and I started the first week in June.

And, to quote Ted Mosby:

"Never underestimate the power of destiny. Because when you least expect it, the littlest thing can cause a ripple effect that changes your life."

All I wanted was to know what day it was. What that lead to was... surreal.

 

I won't go through the entire flood here, don't worry. The important part? At first, I loved it. I was surrounded by books, I made friends I would never have met otherwise, I learned things I didn't know and my brain started being active outside of the hours that I was alone in my writing or watching TV. My diminishing conscious time was filled with stories, drama and laughter. And I knew what day it was. Everything was coming up Milhouse.

At first, another volunteer - who became a friend - and I had so many ideas and so much enthusiasm but by 2020 we were demoralised and slowly leaving without realising it. Every idea we had was eventually (or immediately) thrown straight in the bin, any responsibilities we had lost all appeal or effectiveness and the inconsistencies and atmosphere became boring, confusing and toxic. I went from working in a bookshop to sitting at a cash register for four hours and staring into space. I went from having patience and respect to plain telling my manager he made me look like an arse in front of a rude customer because he said one thing one day and another the next.

Later that year, in the midst of a lockdown, I was (finally!) offered my own flat in a different part of town so I took my chance and jumped ship after four years, thinking that all I had to do was transfer to the other Oxfam bookshop just a few minutes from my new flat. That worked out as well as a chocolate kettle. Long story short: the manager was the kind of person who nodded, smiled, said he understood everything you were saying and then would go ahead and prove he wasn't listening to a single syllable. I said to him, "My main reason for not making the effort to stay at Nicolson Street is that each shift just became sitting on the till and staring into space. I can do that at home. Please don't just stick me on the till for the entire four hour shift." He nodded, uh-huhed and promised absolutely not. Then he asked if I wanted to start on the till to refresh my memory since we had all been closed due to Covid. I agreed because I had forgotten what I was doing the last time I had a shift in Nicolson Street and I needed to make sure our system had been the same as theirs. Let's just say that putting me on the till for nearly three and a half hours (instead of four) was a slap in the face I wasn't coming back from and the manager clearly felt it. I didn't go back and he didn't ask.

Arse.

So I had moved in on New Year's Eve 2020, after my mum and I had been decorating for months (from painting walls to fixing a broken window frame and spending a good hundred - if not more - on expanding foam, as well as filling in stab marks in all the doors) and struggling to get any workmen to come out during lockdowns. If it wasn't for my mum, cousin Dean and friend Chris helping me make my flat liveable I'd have gone insane; and my sister doing a few car runs with boxes and bags. If you have read my previous posts then you'll know, in 2018, after an amazing trip to Italy, I was feeling a bit adrift; I'd been waiting for certain things to happen for so long that when it all came and went I was left lost. 

The thing was, I had not even considered I would survive this long. Whether it was my heart or my depression I never held any stock in the idea that I'd have a long time left. In fact, my depression clung to it. I remember sobbing on multiple nights and thinking, "At least it won't be long now. It'll be over soon." It actually helped, knowing that this would end whether I had the stones to actively do it or not. I was fourteen thinking I wouldn't make fifteen. Then I was fifteen and thinking I wouldn't see seventeen. Oh, okay, but twenty would be the limit. I'll give you twenty-one then. Oh, that operation will take me at twenty-three... or twenty-four... okay, fine but twenty-five is my last offer. 

Then I survived. I truly didn't see that coming. Now what? Thirty is the new fifteen, right?

As a sort of paradox, I knew (and hoped) I'd never survive and yet knew that when it was all over my new life would begin. I was angry that they had left it so long to give me my real life and yet bemused that I still had one. Now, everything would change. I would breathe deep, run (barely), lie on my front without pain, sleep less and become a real boy. I had dreamed of the day that I could keep up with the world, but I had never actually believed the whole situation would be any more than a file somewhere in a hospital drawer that told of a foregone conclusion, decided by the delay of ten years before intervention. Or perhaps decided the minute the technician took a lingering look at a heart x-ray of a seemingly healthy three month old baby and wondered if the heart looked like a boot or was it just their imagination.

Fun fact: this scene has been conjured for dramatic purposes, I have no idea what the technician was thinking or even what their job title was. Hell, I was hedging on their pronoun. But, it is true, a heart that has a boot shape is a symptom of Fallot's tertralogy. Guess my heart has always been in Italy.

But waking up - after being up for forty hours again, all was right with the world - in 2021 in my own flat, I wondered if this was the point when it kicked in, that this was the 'what' in the 'now what?' I'd been feeling. Today, a flat; tomorrow, who knew? But there was a tomorrow and I was finally moving. Literally and metaphorically. Maybe my real life really was beginning.

There is an episode of Scrubs, called "My Philosophy", which sees J.D talking about life with a patient who is looking forward to getting her heart transplant and all the things she'll do. Unfortunately, despite everyone being upbeat and her prognosis being without any of the usual "there's always a chance" clauses, the patient dies. As they try to save her J.D imagines her at the centre of a Broadway transitional number (as she described thinking of death previously in the episode) and she sings of waiting for her "real life" to begin, which ends as she flat-lines. See the song here. I remember the first time I watched that. I remember feeling an impatient longing for my own "real life" to begin. 

Was this it? Was this my ship on the horizon?

However, around March, I started to notice that my joints were not doing very well. I was waking up in pain that I put down to muscle fatigue. I had gone from living on a ground floor flat in a completely flat area to living two flights up on a steep incline. I went from having to keep my room tidy and cleaning up after myself to keeping up with an entire studio flat. I had been miffed about not getting a one bedroom but Nicole had said maybe it would better for me because I didn't realise how much time and energy it takes to keep up with an entire flat of cleaning and tidying. I had thought, "Yeah, I guess", but I was slowly starting to think she wasn't joking.

I moved flat in the middle of Covid to an area that my mobile network didn't cover but kept assuring me they would soon, so for six months I had no signal - which made it ridiculously difficult to move and set up a new flat - additionally no one outside of immediate family were allowed in any one's homes. It felt quite isolating and not something I had experienced before, even for the whole year I hadn't had a phone because I'd had wifi. I had started Oxfam to know what day it was, but the people I had gotten used to talking to were the way, after leaving the bookshop, that I set my days. Not being able to talk to them was, weirdly, something I struggled with. However, I had started to wake up not caring what day it was because I was aching.

When I say aching you think I mean that feeling when you've had a big walk one day and the next day you feel it in your thighs for the morning then forget all about it.

Respectfully...

Absolutely fucking not that.

But also that.

Take that feeling during the movement that stretches that muscle you've overused... but all down your legs, all down your arms. Additionally, it wasn't just when I was moving, it was all the time. When I tell people about it now they look at me like they can't believe I'm in pain as I'm talking to them. I am. Every second of every minute of my life I have a buzzing/burning pain under my skin, it's most prevalent in my arms and legs. But it's everywhere, all of the time. I don't mean "every waking hour", it has kept me awake and woken me up in the dead of night. It had a strange companion too; the feeling of needing to stretch but not being able to do so far enough. It is like I want someone to pull my limbs and just keep going until they come out of the sockets. Maybe then it would stop.

Then add in the strangest, scariest thing that has probably ever happened to me. But, more on that in a moment.

Those pains started to get more intense, last longer, and make me more exhausted and yet all I was doing was going to the closest shop which was - according to Google Maps - less than 0.1 miles away on foot; all I was doing was going in the shower, or taking my rubbish down to the bin store next to my stair door. Then, I started getting flares of random pain in my arms and legs every time I got a fright - so whenever someone shut a door in the area I was in pain; whenever someone beeped their horn in the street I was in pain; a fire alarm went off and I was suddenly seized by pains in my arms that felt like being jammed with needles, all the while I just wanted someone to put me on the rack to stretch me and my body was screaming that I had overdone it, despite not doing anything. I even thought maybe that was it - I wasn't doing anything. Not really. Other people have full time jobs, kids, physical hobbies and exercise three times a week, and here I was going to the corner shop and back then wishing someone would dismember me. Muscle fatigue comes from doing more than your muscles can take, but once you build them up against the strain they no longer feel it. Right now, my muscles where the equivalent of that 'thing' under the bench in Harry Potter's fever dream after he's killed. I needed to build them up. I didn't need to become The Rock but clearly I needed to be able to handle a little more than I was currently used to. My life had changed and so I had to too.

I didn't really think about it more than that because I had a lot going on; with the flat, the DWP (as usual), Covid, my phone, and now this pain. I was also ignoring the voice in the back of my head that was afraid to whisper what it was thinking in case that made it real. 

Was this fibromyalgia?

Pain, muscle weakness, fatigue, mental health problems. All of these could be explained by a lot of things but the pain being triggered by surprise? All I could think of was that was a short stress to the system and the pain was a response to that. And fibromyalgia was the only thing my brain offered up as a reason.

I told it to shut the fuck up and went about my day, trying to avoid daily surprises.

Then one day I didn't want to go home. My downstairs neighbour was an arsehole, playing his radio so loud it made my floor vibrate, and for hours at a time, without any consideration for when that was either. His radio was right under my couch and, living in a studio, my bed was in my living room, so there was no escape from the sensory assault that was so bad it would give me migraines that would eventually result in me vomiting. If you know my story then you might know that when I was a child I suffered from severe and regular migraines, which always ended with me over a toilet and my mum holding my hair back until my body would wretch and convulse but nothing came out. This would go on until it slowly stopped, I would go to sleep and a few days later it would happen again. Over the years it went from as often as three days a week to two, then one, then once a fortnight, once a month, once every three months. Then it just stopped when I was a teenager. We have a pretty good idea what caused it but not why it went on so long or how to stop it and we only realised it in that period of 2014-2016. After one of my surgeries (it's been so long now that all three have kind of melted together in my brain and I don't know which is which) I went through a short phase, maybe a week or two, where I had really bad migraines. It didn't culminate in vomiting, maybe because I'm so practised at it now that I am very good at not vomiting if I don't have to. But after some googling I discovered that chronic migraines coupled with migraine stomachs can be triggered by...

Drum roll, please.

Cardiac intervention.

Yup, I shit you not. Saving my life meant that, three times a week, my mum had to hold my hair and listen to me retching into a toilet bowl. Sometimes I got so fed up and exhausted with it I used to say, "Mum, I don't want to, I don't want to", as if that was going to make it stop. It's not obvious to anyone now (except probably my dentist) but a large part of my childhood was spent on my knees on the toilet floor wondering why there was so many things in my life that no one else had. 

And in 2021 there was this twat making me relive it, only this time it didn't have to happen, it was not my body or a medical condition. So you can imagine that I was fuming, but mostly I felt that of course this was my real life. Just like Scream 2; same characters, different-ish cast.

So, I started spending a lot of my time randomly walking and wandering around, the entire time I was in pain and I was on edge for car horns and banging doors. I walked along Shandwick Place and took a turn into the Barnardo's there. I didn't realise it was so big inside, it doesn't look like that from the street and I don't remember ever seeing it before. 

If you've never seen it before then walk with me as I did that day. I walked in the door, with the overhead heater blowing down on me as if to decontaminate visitors, and looked around. There was a mesh of greens, yellows and whites on the walls and flooring. On the left and right were walls of double clothes rails - at waist and head height - straight ahead there was a low table with baskets of accessories showcased at varying heights. I walked along the left hand wall past mirrored stands with jewellery and socks hanging precariously, I looked across another clothes rail to the 'L'-shaped desk where a worker was hemmed in as they served a customer. I turned my head to the left to a wall of hoisery, as I kept going the walkway was broken into two - the left side a small set of steps and the right a gradual ramp that goes past small alcoves with apparent themes of display - separated by a wall that was used as another kind of display for handbags and shoes. I took the yellow stairs up, noting the change in the clothing and displays on the left; where downstairs had been colourful and clearly feminine, this area was full of dark colours and masculine chunks of stock. On the far right was a corner of children's clothes and toys. if you kept walking you'd see shelves of bric-a-brac past the men's section, mirrors and frames in the right corner, tables between me and them of toys, games, and other assorted donations that didn't quite fit in any of the other sections.

However, I turned right to where a set of wooden bi-fold door were left open. In the middle of the room was a register like the one at the front and as I looked around I realised I was in the middle of a book section. As I stood there, I barely noticed the private door on the right with no indication what it was for apart from the push-button lock on the front, to the left I didn't really register the opening to another area that followed a ramp down to a few doors, all of which was guarded with a railing that said 'staff only' on a piece of paper attached.

To give you an idea of the place:

I looked around and on the way out I saw a poster asking for volunteers. I should have asked someone working there but I wasn't confident enough. Underneath the advert there was a website, I took a picture and when I got home I applied to volunteer whilst my downstairs neighbour blasted whatever he was now using to torture me.

I remember thinking, "Maybe I'll have somewhere else to be than here, listening to that cunt." 

Ever the optimist.

After some back and forward I went in for my introduction day and met the manager, Jo. I should probably have run the minute I found out that Jo wasn't actually the manager at all, they were a store associate who had just ended up with the role of manager thrown in their lap because the previous manager had left and no one had been hired to fill in the role.

Pay attention, kids, because this is a microcosm of what happens at Barnardo's, and probably a lot of other companies. I have worked shifts in four Barnardo's branches and only one of them had an actual manager (who I never met), and she had just started recently. At Oxfam we had our own manager and the main shop next door had its own manager, both of whom were technically in charge of the other shop on the other's days off. Quite honestly, the problem at Oxfam was that the manager refused to delegate effectively. But at least we had one.

However, very quickly, Jo proved that this place was going to be slightly different than what I was used to. For example, when I ventured into voicing ideas and opinions they were listened to, taken on board and used. Sounds fake, right? Before I knew it, I was writing signs in different formats to match their genre, I was building a book-tree - which, if you are on booktok or bookstagram, then you'll know that they are commonplace and easy to do, but the people that worked there reacted as if I had invented it - and I was making little flags to make the foreign literature stand out. All of which were my idea.

For reference for later in the story - the books on the left (both on the table and under it) are the notorious Amazon books which I also used for the tree, thinking that this would draw some attention to them and perhaps they would sell.

Now, prepare for yet another side quest, my friends. Or is it? Quite honestly, it's more of a story arc running concurrently to the main plot. And it's about to be revealed.

Not long before this - I don't have a date so I'm keyholing it in here, okay, try and stop me - I had eventually decided to call the doctor because that whispering in the back of my head had decided to become audible and then it wouldn't shut the fuck up. I thought, there is no point in avoiding it, that won't make the pain go away, you don't know what it is but whatever it is there will be help somewhere. So, I got a phone appointment with the doctor and eventually described the pain I was in. Then he surprised me by asking, quite nastily, "Well, what do you want, tablets?" I stuttered to an answer, "No, I want it to stop." and he said, "Oh." I added that if tablets were what was needed then that's what happens but right now I have no idea what it is, I can barely function and I just want someone to help me. The doctor, whose tone had completely changed, said to me that he thought that it sounded like Chronic Fatigue Syndrome. 

My people-pleasing default wanted to just say, "okay," and go with it, but I couldn't, I was in too much pain to spend the next however long letting them try out whatever they felt would help, knowing that it wouldn't. So, I said, "I don't want to sound like I've come to you for help and then I'm telling you what the answer is but, honestly, my best friend has CFS and I've spent nearly a month living with her, on multiple occasions. I know everyone is different but I don't think the symptoms match in any which way." He responded with, "Well, what do you think it is?" And I told him fibromyalgia. He then suggested we cut to the chase and, instead of spending the next however long trying with 'hit and a miss' medicine, that he would refer me straight to the rheumatologist and get the people who know on the case. I agreed and we joked how we'd see who would win. In the meantime, I waited with no management plan. This man clearly thought I was just calling up trying to score pain medication and I understand he probably gets that a lot but he forgot that some of us are actually in pain.

Anyway, around November 2021, I went with my mum to a rheumatologist at the Western General Hospital. I walked in and told her more about what I was experiencing and she immediately started testing my joints and flexibility. She was using the Beighton score, which is a test that measures joint hypermobility, the score of which can indicate other related conditions. It is scored out of nine.

I got an eight.

Yay?

Here it was, the moment we found out whether I was right or whether the cranky doctor was.

Fibromyalgia (FMS) or Chronic Fatigue Syndrome (CFS)?

Give me the acronym that would follow me around for the rest of my life, like a doctorate.

"Hyper-mobile Ehlers-Danlos Syndrome."

I think that makes it a draw?

For anyone wondering, that is hEDS, and that's not a typo, that's supposed to be lowercase. That's because Ehlers-Danlos syndrome is actually an umbrella term for thirteen different kinds of EDS'. All of them are rare, however hEDS is the most common... of the rare. Of course. Right now, it accounts for around ninety percent of all EDS cases but only one in three to five thousand people are known to have it.

Essentially hEDS is a "heritable connective-tissue disorder". You heard it right, it's the parents' faults. I have that in writing. I'd also like to point out that Nicole is clearly God's favourite. I got the short-straw over here, despite being taller than my sister.

I was told I was hypermobile when I was around eight years old. That was when I really started to notice the pain I was in at school. Writing and general movement was becoming a real issue, with the area around my knuckles swelling up multiple times during one school day. 

I remember once, my usually non-combative nature was tested and lost against a teacher in high school. Mrs Gibson. Poor, poor Mrs Gibson. This woman could only keep the class interested in her subject - religious education - less than half of the time. But, in my opinion, she had given up trying. I actually found some of the subject very interesting and I still remember some of what she taught us. I don't even remember why she was the one who taught us how companies use techniques to sell products but I think of that almost daily - the differences in before and after photos, lighting, wording etc. When she tried she had a lot to teach us but most of the time she never tried, and it was obvious it wasn't because she didn't know anything, she just didn't want to deal with children. One day we went in, first two hours of the day, and our first task - after ten minutes of talking to us - was to copy out a ridiculous amount of pages of our sheets. I remember it was either ten pages or just over it because I put my pen down and sat back, refusing point blank to do it. I remember everyone else seemed to be very quiet all of a sudden (people that spent their days making fun of me, excluding me, mocking me, generally making me feel like crap) and knew that I was not playing that day. I was not about to copy out this amount of information and spend the next three hour subject (after break) not being able to write. When Mrs Gibson laughed (bitch) and asked me if I was having a bad day I told her that I was not going to ruin my chances of doing anything for the rest of the day because she couldn't be bothered coming up with a lesson plan, I told her I wasn't a photocopier. And that it was no wonder no one listened to her if she wasn't going to put any effort in. I then asked her if she was out the night before because it seemed like it, since she clearly hadn't done anything like her job.

Cheeky, I know. I was fourteen. But I had a very valid point; I know that a learning technique is repetition but she had done this a few times before and sat marking work from other classes as we were copying stuff out. Mark your class work in your own time, not ours. I felt attacked. But years later I realised she probably had no idea about my hand problem as my fifth year biology teacher had no idea I had a heart condition. Either way, I was literally begging her to teach us. Given that she didn't discipline me and let it happen, it told the whole class all they needed to know. She didn't put any effort in that day so neither did I. 

However, considering that, if I put my arm up against a clock, my hand points to two, I think they should have caught on a bit quicker. I also started having problems with my knee and hips. This is when it was discovered that one of my legs is one millimetre shorter than the other. Sounds ridiculous, doesn't it? You're also probably wondering why I'm putting you through this. Well, that's because that was put down as the reason for a lot of the pain I was in. Apparently, size does matter.

The next time you are sitting without shoes on, have a look at your feet. See the arch there? Is it nice and arched, doesn't give you any problems? You've probably barely noticed it before, right? It's just a part of your foot. Well, if it's a perfect little construction, please know that I am very happy for you.

And I hate you.

It's a very personal hatred and it's mostly in my ankles. I have fallen arches, which means if I let my foot go it would just keep going inwards to the floor if my pesky leg didn't get in its way, which is something my arches try to ignore every single day. I bet if you put your foot down it just stays there, eh? Just chilling in its perfectly constructed Arc d'Triumph way.

You should appreciate it more. I am not kidding. For me, the act of standing up straight is a constant balancing act, as is walking. I am constantly going over on my ankle - trainers, heels, barefoot, it doesn't matter - and it snaps back. It has never actually broken or fractured in that way but I have no idea why. It hurts like hell and not foolproof. I have ripped soooooo many pairs of trousers, scraped the palms of my hands more times than I can count and had enough red-faces in the street to guide Santa's sleigh all by myself.

One millimetre.

But, here is the rub.

Not all of it is down to that one millimetre. 

The rheumatologist told me that hEDS explained everything I was experiencing in 2021 and probably a lot for years before that. hEDs is a progression of hypermobility; they are irrevocably linked. 

It was the reason I was in pain, it was the reason I was exhausted, it was the reason I was struggling and it was the reason I was spasming at least twice a day.

That spasming was that terrifying thing I mentioned, which had started to happen just before I called the doctor. I would go to Barnardo's (for five hours) and when I came home my muscles and joints would twitch and tighten. It would slowly build up to the point that it was so painful I would be crying, writhing on the couch or floor and biting into something so my neighbours didn't think I was being murdered. Sometimes it would just be my arms, sometimes it would be my legs - which would also seize up on my way home and I couldn't bend them for hours - but more and more it was happening in my core. As if someone was holding a tangle of ropes that ran through me from my head to my buttocks and would twist them, tighter than they should go, in quick bursts. It would get tighter and tighter, quicker and quicker. More and more painful. Eventually it would calm to a stop and I would be exhausted. In the same way that someone who has epilepsy and has a seizure that affects their body comes out of it immensely exhausted; their muscles have just expended more energy than they have stored. In the beginning, I would go through that almost every single day and it started happening even when I wasn't at Barnardo's. Even just going to the shop could bring on somewhat mild ones.

The rheumatologist explained that all of my joints are sitting in the wrong places. If you imagine your joints are held in place with tendons but mines are too stretchy so the joint can move around more than it was built for, on top of that it doesn't sit securely in its seat. So the joints are moving around, too far, rubbing against each other in places its not meant to be able to reach, points that are close to dislocation. If you've ever dislocated a joint then you'll know it hurts like hell and that's because your joint is now pushing and trapping nerves it's not meant to. That's my every day.

In fact, people with hEDS and other joint-connectivity problems are prone to dislocations for this very reason; their joints don't stop where they are meant to. Which is why when I would put my hand up in class it pointed to the window. As a result, it also makes people like me prone to breaking as well. Not only are our bones less protected, we are also more likely to get them into positions that they shouldn't be. We have no idea it's in the wrong position until it's too late because our joints don't lock where they are meant to. If you don't know what I mean, put your arm up, as if you're in that classroom with me. As straight as it will go. See how it won't bend the other way, how it's locked in place?

Yeah, ours don't do that. Not at that position. They don't stop at 180 degrees, they go further. And they don't so much lock as they do just stop. If I put my arm out it will stop at the two position, but if I use my hand to pull on my wrist it will go further. Not because it can or should, because the tendons will stretch as far as I pull them. And that can be right out of the socket.

This is the reason I broke my collarbone falling out of my bed when I was younger. Also how I managed to break my heel - also not a typo and it's about to get weirder - on a bouncy castle. I have fractured my wrist, but how I haven't broken my ankle by going over on it I have no idea, and hEDs is probably why the anaesthesiologist managed to dislocate my jaw at the Golden Jubilee whilst intubating me for surgery. And, I figured out, why I have always had a painful knee and hip. However, since then I have been working on not letting my knee go as far as it can when I am walking, it has helped more than I can express but it's so exhausting and difficult not to let it happen. Try walking and not letting your leg extend all the way back, especially after nearly thirty years of walking like that. On top of that, trying to do that has caused me to go over on my ankle a lot. 

My autobiography should be called "Catch-22".

It's for this very reason that I am so exhausted; my body is constantly trying to hold my joints in an (for me) unnatural position, she explained that even just sitting in a chair involves about double the energy it takes someone without any kind of hyper-extensibility to. She said that the reason I was experiencing convulsions and RLS whenever I stopped was due to this too. All of my joints are tensed all day, trying to keep everything where it's meant to be that when I stop my body is full of nervous energy that can't just disappear, it has to go somewhere. I just wish it would go somewhere less painful.

I looked at the rheumatologist and said, "So, can this go away?"

She said, "Yes." 

Actually, she said a lot more than that but I burst out silent-crying, I'm crying now, reliving that moment. She started to explain more but looking at me, she had to stop. It was only then that my mum, sitting on my right, slightly further back in her chair, sat forward and looked at me, finding me crying.

I started apologising and explaining that I've been in so much pain and I'm so exhausted. After a few moments she went on to explain that it would take a long time, that I would need to pace it but essentially I needed to build up the strength in my joints and tendons to hold themselves where they were meant to be. To stay in their damn lane. She told me that anyone with hypermobility has the same problem but what usually happens is that, as they grow up, they naturally build up the strength, just through life. They play in playgrounds, take up sports, dance, do gymnastics, get Saturday jobs during high-school, cycle to work or university. However, because I am physically unable to keep up and do all of the things that other people do, my joints and tendons never strengthened.

See what I meant about my cardiac issues running my life?

So, if anyone is keeping score, we have cardiac issues and depression, add in hypermobile joints and we got rolly-polly ankles and a jaw that locks itself if I extend it too far and too long. Something which a dentist discovered the hard and bitey way when he said, "say when" and then ignored when I said, "when". I bet he still has a scar on his finger.

Serves him right.

I do actually feel bad about that but, turns out, it wasn't my fault. Since my hamster bit me in exactly the same place years ago, I think I've paid my dues.

As cliche as it is, just having someone tell me that this experience I was having had a name, that it was real, was also a relief. I thought I was going insane. Knowing that, at some point in the future, I wouldn't have to live like this was like being saved.

I do wish she had told me that that was a slippery uphill slope though. A year later I would find this out the hard way. But we'll get there.

As for finally having a name for it and a plan, I thought that was it and it was only onwards from here. A rheumatologist knew what it was right away. That's it settled. Right?

We'll get there too.

Working at Barnardo's I met volunteers and those that were paid to work there, called store associates. Shaun was a store associate (SA) who started off in the book section exclusively but was being dragged into the main shop against his will as there was just so much to do. Ashliegh (SA) was one of those people who loved their jobs, even if it was stressful and wasn't managed or supported, you can bet your last fiver that she wasn't going to be demoralised into not giving it her all. I barely worked with Beau but she had lost faith in the job - she openly told me that herself - after years of watching failures and not being able to fix them. I had started in October and Suzi (SA) had started, in the July after me; she preferred to be out the front, at the till talking to people and keeping an eye out for the shoplifters. Other volunteers included Helen and Eleanor who gave the impression that they'd known each other most of their lives but who had actually met in the shop and just gelled. Kimberly was a woman from America who always had stories or book recommendations to share, she also loved talking to customers and was very good at it, which I was in awe of.

I was in three days a week for five hours each time but, because I exclusively worked in the book section, I barely interacted with other people a lot.

Quite quickly we settled into a routine, which was why it was a bit of a shock when I found out that Jo wasn't coming back. They had asked to be hired as the manager and had been told no so they had given their notice two weeks before and left for a job that would appreciate them. They had been doing the job for a long time, I am not sure how long but longer than you would expect if a new manager was coming in soon. All they wanted was to be recognised and paid for that job, a job they were great at.

After that, the SAs were left to fend for themselves again. They banded together and took the parts of the ship that they knew best; Beau took the admin role and Ashliegh took the wheel. I was still in the library, trying to stop the books falling off the shelves whenever there was a storm coming.

After a little while, Barnardo's sent out an SA from Bathgate (Cathryn) to supervise the shop as there was no one on board who was trained in the managerial things the shop needed. She came out once or twice a week to keep us from running aground.

And from there we all muddled through, doing what we could to keep ourselves afloat.

The layout of the shop meant that if you wanted to go from the main shop to the stock room, toilet, office or even the fire exit, you had to come through the book section. When the designated Barnardo's bookshop on Clerk Street closed during covid everything was transferred there and, as I was told, the book section actually used to be the shop's stockroom. Not only did the book, entertainment and audio stock get transferred from the closed shop to Shandwick, the manager went with it. For a while it had a man called Derek in control of the book section and Ashliegh actually started off helping him.

And then he promptly quit and left Ashliegh on her own with it.

I think I looked to Ashliegh as a manager as she was amazing at just taking control without actually 'taking' it. She was a natural leader and didn't even realise it. She still doesn't. She was in work early, leaving late and always thinking about what we could do to make things easier. She took that place to herself like her own home and the volunteers like family. She did everything she could to make it a happy, safe, enjoyable experience. She also did that with customers, much later there was an instance of a customer getting out of line and when we appeared to help the person on the till he immediately decided Ashliegh was the manager. She basically was, at that point, in all but name. She had the confidence and ease of someone who was where they wanted to be, who knew every inch of her job and someone who it came so easily to.  Ashliegh stood talking to him, neutral and calm. She listened with the patience of a saint and asserted herself in such a way that he didn't feel threatened or confronted. She assured him that she wouldn't call the police, no of course he wasn't barred, he just needed not to talk to the staff like that. It wasn't very nice, it's not a nice atmosphere, is it?

Myself and the van driver Craig stood watching whilst the person on the till continued serving, a lot of the time it is best to let one member of staff deal with any problem so that the customer doesn't feel outnumbered. I don't know what I thought my presence was going to do but if nothing else he knew that none of us were on our own. And I was holding Craig back. He was mumbling about how he wouldn't be talking to him, being too nice, he'd [redacted].

And then, out of nowhere, the man suddenly started getting in Ashliegh's face, talking about how no one was going to talk to him how the server had (not) spoken to him and how he was sick of this, that and the next thing. Craig and I looked at each other and then slowly walked over together, even I had had enough. My only thought was Craig keeping his job. He wasn't thinking that.

He did ask the guy to calm down and Ashliegh began talking to him again, keeping his attention off of Craig and trying to calm the confrontation down before he just transferred it to Craig, because we both knew that Craig wouldn't stand for it. He certainly would not be talking this guy down and promise not to bar him from the premises.

Again he got in Ashliegh's face and as Craig shifted I jumped in and said that was enough. He tried to tell me he was talking to our manager here and to go away. Ashliegh told him she was not the manager and I told him that now he's threatening the staff after she's done nothing but be nice to him. Craig couldn't get a word in edgeways between myself and Ashliegh trying to remind him that Ashliegh was his only friend in this situation.

Craig eventually decided that enough was enough and told him to leave. Surprisingly calmly, as well.

To clarify, Craig is not one of those men who you have to constantly baby, I wasn't trying to keep Craig even or manage his temper for him. The thing is that Craig doesn't mince his words, he doesn't say anything he doesn't mean and he doesn't really care. He has admitted he has a lack of tact and that's why he left his job as a manager in another store, but as someone who worked with him, albeit in brief periods for just over a year, you never had to wonder what he was thinking, he would just tell you. If he thought an idea was stupid, it was stupid. If he didn't like the way you spoke to him, he told you and he wasn't doing anything for you until he got respect. As someone who struggles with reading people, these are my favourite people. Also, as someone who is too much of a people-pleaser I am in awe of people who can just tell you "fuck off, come back to me when you do x, y and z".

Additionally, I think the first time I fixed his phone for him I became 'not some daft volunteer'. I'm probably still daft, but I had some use. And, yes, I did just said "the first time". I've done it twice and I saw Craig at least once a week at the new shop. But, like everything else, we'll get there too. In that moment I was merely urging him to give Ashliegh a minute, this could be done without anyone needing marched on their way. If anyone could have, it was Ashliegh.

In the (far too) short time that I worked with Ashliegh she became someone I learned from, shamelessly copied and, honestly, looked up to. And she became an irreplaceable friend (at the time). She also changed my life whilst I was ranting about folio society books. You know what I'm going to say, right? See above.

Until around June we muddled through and made it work as best we could then Shaun decided to pull a 'Derek' and quit to go back to his old job. This meant that it was just me in the bookshop, three days a week, trying to keep up with it. There was a few others, for an hour or two here and there, but mostly I was paddling for my life as no one else had any time. In fact, because there were no people, no time and no management, all of the books were priced the same... £1. This was regardless of size, age, condition, rarity... anything. And this was precisely because they had no one that worked in it, and if anyone ever had any time they didn't know anything about books specifically. All they knew was - sticker on book/dvd/cd/vinyl and put that on the shelf. Done.

In July I had a bit of a punch in the gut. It was one of those moments when you think you're making progress and then everything goes to shit in one swift move. I had been seeing an occupational therapist whilst I was waiting to get an appointment with physiotherapy; the idea was to get an exercise plan from physio that would help me build up strength in my joints and tendons. This was supposed to be the first step towards not being in this pain any more. Occupational therapy helped me with ways to make every day living better but it was all expensive and it wasn't something I have been able to put into practice. Well, I did buy a magic can opener. Not the motorised one - remember, I'm don't have Steve Jobs' money - but one that takes the entire top of the can and it so much easier on my hands than even a ring-pull. Such progress, eh?

I was excited to have my physio appointment and I went feeling like this was the first step of taking control of the rest of my life. No more tears and confusion - I had a direction. It was to Tollcross Health Centre, where I had asked to be seen because it was the closest place to my new flat and my volunteering. I went in there with nothing but readiness, and resolution.

And it was shot to fuck.

I saw a therapist called Rebecca who will forever be in my memory as the biggest bitch I've ever met. I'm sorry, but I can't even be nice and try and play devil's advocate on this one. She could have killed me.

I went in, sat down, and explained to her how my condition affected me so that she would know what areas I needed to target. She asked me how it affected me, I didn't just go in and start going off on how bad my life is. She then said to me that clearly I was thinking about it a lot. I was slightly confused because I'm in pain every second of every day so of course I'm thinking about it. She told me that I was thinking about it too much and what was happening was that my brain thought I was in pain when I wasn't. At this point I knew so little about my condition that I was taking in what she was saying, thinking that what she was explaining was related to what the rheumatologist said about all of the nervous energy being stored up and having nowhere to go. She then proceeded to tell me I needed to watch TV and distract myself. I just stared at her because what was she talking about? She asked if I ever just binge-watch something, it doesn't even have to be good. In fact, her and her friends sit down and watch rubbish TV on purpose to decompress. She then asked me if I had any friends. 

Attack teenage me, why don't ya?

I slowly nodded, confused about where this was going. She then said I just needed to find something to do with my time and distract my brain. I needed to stop thinking about it because it wasn't real, it was all in my head and I needed to get out there and live my life outside of my head.

I walked out of there in a daze.

Did she just tell me to get a life?

It's not real. It's in your head. It's not real. Do you have friends? It's not real. Get out there and live your life.

It's not real.

I thought about the way the rheumatologist had explained it. How she had told me that I didn't need to be in this pain for the rest of my life.

But I'd been told that before, hadn't I?

When I was eighteen I went to a dermatologist who prescribed a miracle drug and told me "You don't have to live like this". How was that going? I had that medicine twice. It permanently altered my body. I'm thirty-two and I still have acne but now my nose gets so dry it bleeds unless I routinely put vaseline up it; hair around my mouth, eyebrows and arms grow darker and quicker than they used to; I have freckles all over my arms from being in the sun for five hours on the hottest day of the year without suncream when I wasn't supposed to be, even for five minutes (this seems like an okay side effect but my arm got boils on them, the like of which I have never seen on anyone that wasn't a burn victim, and it will probably bite me in the ass later in life. I never thought I'd be around long enough for it to matter).

I knew it wasn't in my head. The rheumatologist had given it a name and she'd clocked it immediately. She hadn't ruminated over it (ironically) and been in any way indecisive. She had spoken to me and tested me and then diagnosed me.

But she had referred me to someone who, instead of giving me the tools to make it go away, had told me to get a life.

It's in your head.

I walked home in tears. Everyone was looking at me and I couldn't think straight. All I could think was that the help wasn't coming, I was going to feel like this forever. Was this really what I had survived for? To feel like this forever?

I went home and I had an absolute mental-health crisis. I won't talk you through it. I don't want to. My mum says I'm being over-dramatic but she wasn't there. So trust me, when I say she could have killed me, I'm not joking.

The next morning I woke up and decided I was not beaten. Not by fucking Rebecca, the woman who needed to laugh at people on "crap" TV to decompress. Not by some bitch who heard my story and then asked me if I had friends. Not by someone who looked at me like I was pathetic when I was pushing through exhausting pain every single day just to function. Not when it took me double the energy of anyone else to sit there and listen to her bullshit.

She couldn't go through what I've been through and get up in the morning and decide it wasn't over yet. She had no idea who I was. I was Sharon's youngest. I was Nicole's wee sister. I was the woman with the heart condition. I was the woman with the mental health condition.

I wasn't done surviving yet.

Fuck Rebecca.

When I was leaving the rheumatologist's office she had said that if I had any questions or problems that all I had to do was call the office. So that's exactly what I did. I called her office and I got a poor secretary who was a little confused by my phone call. Not the issue, I hadn't even gotten to it yet, but by the fact I was calling at all. No one called. That didn't bode well but the doctor had said I could so the secretary went away and came back. The answer was basically take it up with physio. Thanks for that.

So I did, I called the number that originally called me and asked me which centre I wanted to be seen at. Funnily enough, she hadn't specified that this one had an absolute weapon working for them. But I asked if I could be seen at another place and was told, weirdly, no. I actually had to ask why not and she told me that whatever centre I chose was the one you were registered at. I asked her what happens if I move house but all she did was ask if I had. In the end I hung up the phone and drew a blank.

But there was one other person who would help and yet it was someone I hadn't really thought about: my occupational therapist. I had one last appointment with her on the phone, she had wanted to make sure I was taken care of by physio before she discharged me. This woman was the anti-Rebecca and probably saved my life. When I told her on the phone about what she had said, about what the rhuematologist's office had said and what the original office had said, she scoffed and said it was all ridiculous.

Thank you!

Maybe it wasn't just me after all. Maybe it really was everyone else going insane. I was basically begging for help and getting nothing back. She then said the one thing that would change everything: "You know you can phone up the health centre and ask for another physiotherapist, right?"

I hadn't considered that. This was the NHS, a system I had been in my entire life and I had never thought to ask to see someone else.

Actually, I had. Once.

I went to the doctors after my surgery because I was having a reaction to something but what it was I had no real idea. I was itching everywhere almost all the time, my skin would puff up like a reaction to a bee sting, and I started feeling sick all of the time, mostly when I was in the middle of eating. My skin had always been sensitive, especially after the acne medication, but this was getting out of hand. I had to change the kinds of tissues I used to blow my nose - which I could do now, have I mentioned that? - I had to change my toilet paper, moisturiser, soap, sanitary towels, shampoo, hairspray, lip balm. Everything. So eventually I realised I must be eating something that wasn't agreeing with me but I didn't know what it was, I'd never had this problem. I started googling symptoms and whilst it agreed that I probably had a food sensitivity I could not narrow it down further so I did what the internet suggested and cut out the main food groups that people are allergic to - lactose, dairy, gluten and egg.

I didn't have to cut out nuts because I don't eat them. They nasty. I didn't have to cut out shellfish because, compared to how much I was reacting, it didn't make sense.

For two months I didn't eat anything with the four groups in it and my reactions stopped, clearly I was on the right track. After then I slowly reintroduced gluten and immediately reacted. beginner's bad luck, I guess. I love gluteny things.

I have had it drummed into me my entire life that you don't make massive life changes, especially if it involves your body, without consulting a medical professional. I had read that people without celiac disease can in fact become diabetic from cutting out gluten, so I figured I'd be safe and ask a doctor if it sounded like I was on the right track and if I could be tested for celiac. After I explained this to him he then asked me why the hell I was there. I was confused and he went on further to say that if I thought I was celiac or intolerant to gluten and I had got that confirmation from my process of elimination then why was I being a drama queen and wasting his time.

His actual words.

I did ask to see someone else and told the receptionist what had happened, she looked at me blankly, told me he was only a locum and did I want a different appointment. This is a doctor's I'd gone to my entire life that had kept mostly the same administration staff.

So, you can imagine that I wasn't big on asking for someone else.

For the record, I was tested for celiac and it was negative however I am definitely intolerant. Probably. I went to Italy in 2018, as you probably know, and I decided, screw gluten, I'm eating everything. I was just going to have to get worse acne, be toxic and deal with it. I ate pasta every single day, we had far too many cones of gelato and more bread than I ever had in ten days before, and I didn't react at all.  After going back to the internet I found a few articles on the theory that a lot of people who think they are gluten intolerant are in fact reacting to the pesticides the UK uses on its wheat. A pesticide that Italy does not use. So, whatever gluten I can get from Italy I can and I don't react to it at all. To this day, I eat Napolina pasta and pizza bases as it's made in Italy.

*Jump back*

I'd decided not to be beaten so I called the Tolcross Medical Centre and asked to see another physiotherapist. I tried to play it off because I didn't want to rock the boat and burn my last bridge but when the receptionist asked if it was just that we didn't gel I couldn't let it go. I told her that no, we didn't, because she had told me that the diagnosis the rhuematologist had given me wasn't real, that the agony I was in every day was in my head and that all I needed to do was distract myself by getting a life. That was what I left with that day, not an exercise routine or a plan for the future.

I was reassured by the stunned silence on the other end of the phone and then the stuttering polite, Ashliegh-esque, response while she found me someone else. The only physiotherapist that was also static (assigned to that centre) was the boss. That was fine by me.

So I got a new appointment with Andy. When I walked in Andy asked me about my pain and then asked why I had asked to see someone else. I told him what I told the receptionist. I didn't bring it up, I didn't seek him out to complain, I didn't rant at him. I simply answered a question: she told me that my condition wasn't real and that I simply needed to find things to do and stop thinking about it.

He then looked right at me, leaned forward and said, "Well, that's unfortunate. I want to ask you some more about your daily life, how the pain is affecting that, but let me just say this." He paused. "It is not in your head. It can't be. It is real."

I nodded, ready to cry all over again. It bloody well wasn't in my head and it bloody well was real. It was ruining my life, it was slowly killing me, it was taking away my second chance. So fuck anyone that told me otherwise. Andy gave me an exercise plan, as I had previously expected, and that time I only nearly cried all the way home.

Seriously, fuck you, Rebecca.

Then in August 2022 I was feeling a little harassed. I was walking back and forth from the shop floor to the stock room trying to find things to fill up the shelves, trying to keep up with the volume of donations but also not having enough. The stock room in the back was mostly taken over by the main shop, there was only two shelving units for the book section, both backed against the wall as you walked in the door and anything that came in usually blocked the floor so much that it was a game of gymnastics to try and find what you needed or, at least, what you could. I had just cleared the floor when the van driver - long-suffering Craig - brought in our stock from the distribution centre, this included a larger than usual mass of books, DVDs and CDs. Which is great, right? Just what I needed. But I had just spent an hour clearing the floor. To be clear, this was not at Craig at all, just the sheer luck that I had decided to do that and had just finished as Craig pulled up. In actuality, it was probably a very good thing or Craig would have had absolutely nowhere to put any of it. As it was he did! Right where I had just cleared a path to walk. *strained thumbs up*

I started going through these donations. This would usually include taking a box to the book section till area, which never actually functioned as such for as long as I was there, and before. It looked like a till, it was set up like a till, but it was, in fact, nothing but a computer we used to print out the stickers than had the barcodes on them that we scanned at the till. These stickers either went straight onto the books, CDs, DVDs and vinyls, or they went onto the tags we attached to the clothing and other products, so everybody needed them. This fake-till was the only place that these could be printed out because the printer we had for them in the office had not worked in a while and, as they did, everyone had just got on with it.

Now, for the past year (nearly) my ass would be pretty much parked up there with various boxes of donations. This was for two reasons: to always have a member of staff present and able to observe what was going on as well as help, and because there was no sorting space in the stockroom for the book section. All I had was a desk beside the till to put my heavy boxes and get in everyone's way. This day I was determined that I would, once again, see floor before I left. However, as the delivery was bigger than usual and because I wanted to be on the move and burn off some nervous energy, I would go in the back, pick up a book and decide - going out or going in the recycling. The recycling was on ramp leading up to the bookshop so I would leave when I had three of four of each, drop off my recycling on the way to the fake-till, print out my stickers, put them out and head back through. Lather, rinse, repeat.

As a volunteer there is a lot you can't do because you don't have the clearance. As if it's the FBI. For example, we weren't allowed to do refunds on the till, we didn't have keys to the shop, we didn't have a company-specific email or any real need to talk to anyone above the manager (or supervisor, in our case). But, I know now, there are lots of tiny details that you don't know or understand because you're not an SA and they are so second-nature for them that they don't even think of explaining it to you until you bring it up. Or, in this case, even then.

I opened up a box of donations to find eight or nine folio society books.

That's right, folks, we're only in season five.

If you know anything about books then I don't need to explain this to you but, in case you don't, folio books are special editions of books that are usually hard backs and come with a cardboard sleeve. They usually have unique artwork, possibly with extras such as signed by the author or with a book plate or poster. As a result they are more expensive and Folio Society folios are the best known sellers of them. To give you an idea of price, the cheapest fiction folio on their website right now (not children's) is £39.95 and has forty-two pages in the entire book. The highest priced non-fiction (again, not children's) is £500 which is hand-bound by full-grain leather with hand-marbled paper sides.

The folios I picked up in Barnardo's had £1 stickers on them.

One pound.

I googled them at the time and, brand new, the cheapest of what I had in that box was £12.

One. Pound.

Poor Ashliegh was also working that day and walked right into me about to blow up. She even asked me if I was okay. Poor, poor Ashliegh. I thrust the book in her face, pointing to the stickers. The following is what I can sort of remember through the haze.

"One pound, Ashliegh. There's one pound stickers on these. One. What even-? I know that there aren't any book people here but is there anyone working at the bloody distribution centre? What-? I can't deal with this. One pound."

What I didn't understand at the time was that they were stickered because they had been at another Barnardo's shop and been decoded to us, which just means that they have decided they can't sell it and that we probably can and give it to the van driver to bring to us. The stickers are merely on them, either because they're previously been on a shop floor, or because they're gift-aided and the sticker gives the next shop the gift-aid number for when they resell them.

That last reason was exactly why they were stickered with £1 stickers, which was the easiest to print out as the number was printed too, to print it blank we had to write the price on each one. Which would have been better for decoding but at that moment that wasn't what I was focused on.

I had been complaining to Ashliegh for a while because everything was priced at one pound as I was used to the Oxfam pricing guide, which very rarely involved anything cheap or a bargain. Not that I ever used it because the manager wouldn't let anyone else price but, being bored on the till, I did read it once and it was based on rarity, age, condition and demand. But as I was always complaining about it to her, Ashliegh thought I was just doing the same, I had to explain how much they were worth and my rant spilled out into the layout of the bookshop.

Ashliegh then asked me what I meant so I explained that bookshops should make sense, their genre layout should flow. If you go in looking for a specific book, you should really be able to find it within a few shelves of where you think you should be looking. You don't want to have to dart all over the place, guessing and hoping. In this shop the fiction and non-fiction were not separated, and that was bookshop basics. If you walk into any bookshop the layout makes sense - for example, putting the foreign language books beside the travel section makes sense, right? Putting them beside the children's does not. Putting all the entertainment together makes sense, right? Dotting them all over the shop, even splitting up the DVDs into whatever shelf is free does not. Putting children's and young adult near to each other makes sense, right? Putting children's on the opposite side of the shop between foreign language and cookery does not.  

But, at the very least, the fiction and non-fiction categories are clearly divided. I then said not to get me started on everything else and then went into it anyway. The children's was in a cramped corner, parents don't have the time or the energy to be trying to maneuver kids or buggies into tight spaces, they want to park them. That's how they spend money. The same goes for vinyl collectors, they want space to bend down, look through each one, take them out of the sleeves and check the condition. In our shop they were cramped into a space that meant they had to turn sideways to bend down and constantly had to stand up to let people - including staff - past. Our comics were in a basket that wasn't even big enough to hold them whilst they lay flat, and as a result we only had three out so that they didn't bend. And that basket was on the end of a shelf, with a space beside it so narrow that no one even tried to squeeze through it so no one knew they were there.

I was biting my tongue on the Amazon books. We had a supply of books from Amazon, from before I even started, that we had had so long that we were no longer bound to sell them for the company at their specific price. But no one even looked at them, customers or associates alike. There was a display table that the overabundance of Amazon books were sitting on. And sitting. Aaaaaand sitting. Squatting, more like. They had not moved or even changed in the time I was there, except when I commandeered some space for my miracle book-tree. It was prime real estate and Jeff Bezos was lounging and farting in it.

Then Ashliegh said to me, "You know, I've been talking to Cathryn."

The exact words she then said escape me but I will summarise: her and the supervisor thought that I should take over charge of the bookshop (we called it a shop, despite the fact it was a section in a shop) and be its unofficial manager. I stopped and turned to look at her.

Sorry, what?

I have to admit, I did think she was messing with me because I was always ranting about what I would change. Apparently she was not joking and neither was Cathryn. I had to say to her that I would do that but if I was going to do it then they needed to understand I was going to actually do it. I would change things, I would be in charge, and I wasn't about to half-ass it. If I was in charge I needed everyone else to follow through on it too. I was not about to put my whole into it, go through the inevitable pain I was going to experience, and waste my energy if they didn't mean it, or I was going to be undermined.

It was very much, "Don't say it unless you mean it, 'cause I'll fucking do it."

And just like that I was a volunteer who managed a book department.

And just like I was an absolute psycho.

That day I drew out how the bookshop was set out, I took it home and I changed it. I wrote a list of things that needed to happen, change or be implemented. The next shift I put up a sign that informed customers that we were rearranging and I pulled that place apart.

I had initially went in and walked Ashliegh through what I was thinking and only when I got to the end and she was looking around did I realise that I was waiting for the okay. I was asking for permission and she had no intention of giving it. I was in charge, I didn't need permission. I played it off as running it by her and making sure she couldn't see any health and safety problems or day-to-day running pains-in-the-arse.

She said no and I got to work.

I separated the fiction from the non-fiction, added a section for comics, moved the vinyl and put the rest of the entertainment in the same area, I moved the children's and put it next to the young adult books and I moved the bloody Amazon books to a better area, taking a whole lot of them and putting them in the back for shelf fillers. I added a Scottish section, I displayed the games better and Ashliegh and I rearranged the furniture around the till/ticket printer to make staff and volunteers safer. 

After that, I started work on the small part of the stock room I had because its layout was as stupid as the shop floor's, and that was the day I met the Area Manager for the second time. But it was the first she remembered. To be honest, I barely remember the first time, it was so long ago. When Jo still worked there I had been drafted to being on the till at the front and as she was leaving Andi was introduced to me and asked if I liked working here, she asked some other small-talk type questions and then left.

The second time I had moved everything in the back and had boxed myself into the corner - literally, I couldn't see over the boxes - where I was desperately trying to move one of the two shelving units we had to a better position but it was stuck on a pipe and I was getting absolutely nowhere. It was solid. As I was struggling I heard my name mentioned in a conversation in the ramp-area of the back. I knew it was the supervisor, Cathryn, and I also knew she wasn't talking to me, only about me and I figured it was probably to the area manager. I could hear someone else talking and she said, "When is she next in, so I can meet her?"

Oh no.

I thought that she was going to tell me that volunteers can't be in charge of the bookshop and who did I think I was? Not only that, I had been banking on no one coming into the back stockroom and seeing the mess I had made, because an hour had gone by since I had gone in there and no one knew what I had had planned and no one had seen how I had dismantled the place. And I couldn't see over the boxes.

Maybe if I crouch down they'll think I've gone.

"She's just through here tidying up the stock room."

Tidying? Cathryn, I am doing many things right now - panicking, hyperventilating, perspiring, hearing my doom coming - but tidying was not on the list for another hour.

"Oh my god," were Cathryn's next words and I decided to play it off.

"Hello!" I said, with a shit-eating grin, trying to look over boxes.

"What have you done?" Cathryn said, but she said it with a laugh.

After that I was introduced to the area manager by the supervisor and, telling them what I was trying and failing to do, I was then mortified by the fact that they both then started to clear boxes to come and help me. Andi's phone went a few minutes later and it left Cathryn - who was red in the face by the time she dug her way to me - to make a path and come and help me. 

I don't remember speaking to Andi again that day and I thought I'd escaped the guillotine with a plea of insanity. For now, anyway.

As it was, no one told me to stop and they actually encouraged me. Not long after that I did speak to Andi again in passing and she was nothing but helpful, asking me what I wanted to do and what she could do to help.

There was one feature of the bookshop I may have forgotten to mention up to this point but that actually played an integral part in the series of events. You can see it if you scroll back up to the first photo - which is actually from after I rearranged the genre layout - and look behind the till on, what we called, the back wall but is on the left in the photo. You will see a long strip of plastic coming down from the ceiling. That is because there was a hole in the ceiling and water would drip, flow and, once or twice, pour out of the hole. By the time I started it was mostly dripping but it was a pain in the damn arse. It would use up the shelf because we had to put out a rather unattractive basin to catch the water and, occasionally, the water wouldn't go where it was supposed to and ruin some of the books.

When religious statues cry it's a miracle but when the walls drip it can be a bit off putting.

But it can also be a bit bloody dangerous.

We had a basement. Well, that was a reach. The building had a basement but because Barnardo's didn't pay for the space we weren't supposed to use it. However the shop was using it for storage of all of the things we were expected to keep throughout the year, such as furniture and fixings, seasonal new goods, mannequins, paperwork, and pretty much anything else we didn't have space for. 

Then we got rumbled by the great Scottish weather. We had periods of really heavy rain and around that time the fire alarm started acting up. It went off all day one day and we still had to open and have a regular business day like it wasn't happening. There was no fire and there was no peace either.

This happened on a few occasions before someone official decided to look at the electrics and the electric cupboard was down in the basement. The should-be-totally-empty-but-wasn't basement. We were told that water had got into the electric cupboard and it needed repaired as the fire alarm now wasn't going to work.

Oh, and by the way... you've got a very short time to move ya shit.

But you know, they didn't say it like that.

So began the massive panic operation of moving everything that was downstairs out but then it was a question of just where the hell it was going to go. It was decided that we had to grab what we absolutely needed and the rest was either going in the dump or to another shop. This meant that not only was Craig going to be knocking his pan in for the next few weeks but that Andi called in reinforcements from Clydebank.

In the middle of all of this I was still proving that I was definitely insane. At one point I was up a ladder trying to hammer a nail into the solid brick of the stock room. For anyone that doesn't know, Edinburgh is full of buildings and streets that are underground. I don't mean in a sort of, "Taylor, that's just a basement" way. I mean that we built a town on top of a town. If you don't know this story, look it up, it's fascinating, in my opinion. But there was me trying to hammer a nail you'd get in poundland into brick that had been there longer than I even knew. Needless to say, it didn't go in. I think this was when Billy arrived from Clydebank and confirmed that there was no way that was going in there, hen.

In the middle of all of this I was helping Craig bring in deliveries because he was on his own with the day to day stuff, which he still had to fit in the crap he now had to clean up. One day, I went downstairs to see if he was okay and I thought we had had another leak because he had sweat physically dripping off of him like running water.

I don't really know what they were doing downstairs or when as I only went down every so often when Craig was on his own to make sure he was okay and to remind him we were all there to help but, Craig being Craig, he wouldn't accept help. In amongst all of this we got talking to Billy as he came back and forth, in and out of the office. He asked me why I didn't have a job in this shop. I told him I was disabled and on benefits. He told me that he was too, he went through the injury that had disabled him and I told him a little bit of my disability. He said that he was allowed to do a certain amount of paid work and still get benefits, that I should look into it. Then he asked me if I would be interested in that, because he knew the area manager.

So did I, and she probably thought I was insane.

No, they were friends. I said I would be but only if it didn't interfere with my benefits because I am nowhere near able to lose them and have to take a full-time job, I'd be hospitalised within six months.

He said to have a look online, see what they said, and he'd talk to Andi because he thought they needed to snap me up. I didn't really think much more of it, I thought he was just being nice but he wouldn't actually say anything Andi, of course. People say these things but don't follow up on them, we all do it. I went back to trying to figure out how to hang a cork board on an impenetrable brick wall.

It's been so long now that I don't actually remember what days I was in Barnardo's, I do know that it was the same three days for five hours each time. I also know that one of those days was a Friday and I know that because one day I went in on a Thursday by mistake. I got up in the morning for my next shift after talking to Billy, jumped in the shower, got everything ready and headed up to the shop. I was tired, I was back to my not sleeping routine and I really don't remember if I slept that night or not but either way I was around the corner from the shop when I realised it was Thursday.

I stopped dead in the street and then thought, "ah, fuck it!" and kept going. Since talking to Billy I had actually gone onto the government's website and read that I had been confused the entire time. I was under the impression that you could only volunteer for up to sixteen hours a week and no more. I had always thought that, all the way back to Oxfam and so that's what I had stuck to. Now I knew that you can volunteer as many hours as you wanted, you could only take on paid work for up to sixteen hours a week, and make a certain amount, whichever came first. So, I figured one more day of volunteering won't kill me, if I'm too tired I'll do a couple of hours and go home so I can handle tomorrow. I went to the door of the shop and knocked. Cathryn came to open the door for me I explained my mistake before asking if she minded if I tried a shift today as well.

She let me in and that is why I was there on the very day that Andi came to visit. I was mortified. I knew she was coming on Thursday and now it was going to look like I had done this on purpose to talk to her about what Billy had said. But then again, it wouldn't, because he would never actually say anything so it was fine. I got on with my day with Cathryn joking that she was going to think it was Friday and myself wishing I had just turned around and gone home. Maybe gone to sleep, for once.

I didn't think more of it even as Andi arrived and I carried on, I felt fine but I didn't realise the damage was already done and it would be an absolute nightmare getting up the next day. The convulsions when I got home were not as bad as they were on Friday after my shift. At one point Andi stopped me in the bookshop as she was going to the office and I was filling the shelf of the relocated travel section, which meant I was facing where she was going.

In short, she told me that Billy had indeed spoken to her and asked why I don't work there. I went through the same conversation I had with Billy except that now I knew what I was allowed to do. When she asked if I would be interested I told her honestly, I would be but I only want to keep doing what I'm doing, if she wanted me to be in the main shop then I'd rather stay a volunteer and keep doing what I was doing. I remember saying that this is what I know, this is what I'm good at and if you were to let me keep doing that no one would do it better. She looked me dead in the eyes and said, "I can see that", then looked around. She then mentioned how different it already looked and said that if I wanted the job then my job would be a store associate but she wanted me to keep doing exactly what I was doing. I told her as long as it didn't interfere with my benefits then I would definitely be interested.

She told me I had to apply online for it, to ignore the advertised hours because she set the contracted hours and she would make mine a standard fourteen hour contract that they give out. She did ask me if I would work fifteen hours until they hired new people in a few months. We had done the money maths as we spoke and that would still fit in with the allowance. I said that would be fine but I would want to move back down to fourteen once the new hires were in, to give me a bit of breathing space on the allowance and make sure there were no problems. She said that was absolutely fine and reiterated I need to apply online before we both went about our days. She went back to Glasgow and I finished my shift and went home.

I didn't apply for the job right away, I took advice. If you haven't had the need to call on Citizen's Advice in your life then you are very lucky but you most probably know who they are. I called them to ask if my information was correct and to see if they had any help with the process however they were so busy that I had to leave a voicemail and, as it stands, I have never heard back from them. That is, in no way, a complaint; Citizen's Advice helped us when DLA was changed to PIP around the time I was having my last surgery and they were invaluable. It's not until you have need for this kind of help that you realise how lucky we are in this country to have these resources, not only available but, for free. Additionally, my housing association has a welfare advice service attached to it so I thought I would cover all bases and put in a request with them for advice too.

I had previously experienced getting help and advice from this service too; when I first moved into my flat, an absolute saviour - James - from that office, spent such a long time on the phone and through emails helping me set up my flat, welfare issues and dealing with paperwork and phone calls so that I didn't have to. Not only was it amazing to have someone who not only wanted to help but wanted to make sure I understood what I was doing before, during and after I had done it, it was also extremely helpful considering my phone wasn't working at that time.

Flashback to season one of me trying and failing to make phone calls in my new flat because EE's coverage in the area is non-existent. That was a fun time.

Unfortunately, James no longer worked there and I have since heard that he has gone on to work for a law firm.

I managed to speak to Patricija who was just as helpful and amazing. She reassured me that my information was correct, talked me through all of the paperwork that needed filled out and who needed to be notified of what - assuming I got the job. 

Then I realised what was next - I had to actually apply for it. I applied online, as Andi told me to, and I waited. I did not have to wait long. I got an email a few days later saying my interview would be via Teams and on that Friday. I arranged to do my interview in the shop's office as I was volunteering there that day and thought it would feel easier to be ready to speak about the job I was already doing whilst I was actually doing it. Even as I was waiting for the interview to start I was going through all of the research I had done for the interview - including Barnado's values which you need to know, understand and apply to whatever they ask you. I was surprised when the interview started as it was with the area manager as well as the recruiter. I had not expected Andi to be in the interview because everyone had already told me that the interviews had to be impartial and I could not expect any help.

The only thing I remember about the interview is, at one point, thinking, "What the fuck am I even talking about?" I've never heard myself waffle so much in my entire life. Yet, at the end of it, my area manager said, "Good answer." I have no idea if she was being serious or if that was a professional version of "ooookay" but either way I felt a little better knowing it had, potentially, made sense to someone - just not me.

I was expecting to end the interview and be contacted in the next week or so. I was weirdly worried about the outcome even though everyone working with me told me that it was a foregone conclusion, that this was just a formality. That sounded ridiculous. However, at the end of the interview the area manager said to me, "I'm sure you already know this but the job is yours. You'll get the offer through by the end of the week and it'll give a date in the email. You have to go into the offer and accept it before that date or the offer expires and then I'll get in touch with you and Cathryn and we'll talk about start dates, training and everything. Okay?"

I stuttered out a yes and a thanked them both, then turned off Teams and sat back.

Sorry... did I just get my first job?

I blanched a little and then I thought, "We'll deal with that later, we have books to tidy up, remember that mess you made before the interview?" So I was up and out of the office chair then out of the office door before I really had time to think. I wish I had taken time to think because it didn't occur to me that the people I work with would care about how it went, even though Ashliegh had got me a card and doughnuts to say good luck. I also didn't think they'd care enough to ask so I didn't prepare my reaction. 

I'm sure that sounds silly to most of you but another thing I learned at Barnardo's is that I am definitely neurodivergent even if I don't know what lane I'm in on that highway. It was actually another store associate that made me realise that. Let's jump ahead to a scene from a future season with no larger context, to Christmas 2022, when three of us were standing for a few minutes in the doorway of the bookshop, discussing something that had happened earlier. Beau then looked at Ashliegh and said, "I love that everyone that works here isn't neurotypical. I'm neurodivergent," she gestured to me, "you have ADHD," she looked at Ashliegh, "and you're neurodivergent."

I stuttered into whatever Ashliegh and Beau were going on to say because I said, "I don't have ADHD?" to which Beau laughed and said, "Well, you got something because-," she gestured to the display I had put up where I had erected the miracle book tree the year before, "you're not neurotypical."

That's when I started to think about the way my brain works, how it was very possible that I wasn't neurotypical and what that could mean. By that I mean that by knowing more about it I might be able to understand myself more, how I function, how I think, how I react and maybe I'd be able to turn the knowledge into a strength and weaponize my brain on my damn side for once. I started by looking up ADHD, autism and other neurodivergencies and found a lot of experiences in the community that I thought were merely personality traits of mine or side effects of the stroke I had when I was six months old. I started to think that maybe the way I think hasn't been predetermined by a brain blockage in 1991, maybe I've always been destined to be the person I am right now, maybe it's not something that I just have to suck it up and be okay with. 

Lots of people are neurodivergent. An estimated 15-25% of the world's population, in fact. Think of that. 15-25% of 8.2 billion people. An estimated fifth of the UK's population. 10-15% of the 5.5 million people that make up the Scottish population.

Did you ever think of that, Taylor? The way you think, the way you react - good, bad and ugly - actually includes you rather than excludes you. I spent my childhood with a name no one else had, with a condition no one else had, with scars no one else had, mental health problems I didn't even question that no one else had (of course they did), with a sexual orientation (or two) that no one else had (or so I thought), and a brain that worked in a way no one else's did because of a medical crisis no one had had.

Then I grew up and other people had my name, other people had my condition, other people had my scars, other people had mental health conditions, other people had sexual orientations I had, and apparently other people's brains reacted the same way as mine and not because they had experienced the medical crisis I had - but other people had!

To bring you back to the past, I walked out of the office a little bemused but also switching back to where my head was before the interview and I walked into the bookshop and headed to the door to head to the front of the shop to go back to the conversation Ashliegh and I had started about a problem we were having with arranging stock.

"How'd it go?" Cathryn asked as I was walking past her.

I burled around - unprepared, remember - gave her a double thumbs up, wheeled back around and made to keep walking, like an absolute tit. "Who gives a thumbs up, never mind two?" still screams through my head once a week like a drive-by anxiety attack. I told Ashliegh what was said and then, eventually, we got back to the problem in hand. The next time I came back to the office area Cathryn asked me probably what she was going to ask me before me and my double-thumbs burled out of the bookshop, "Did they give you any idea of how long you'll wait to find out if you've got it?"

That's when I blindsided everyone by announcing that Andi told me I already had it and would get an email offer soon. Apparently the thumbs had been vague, who knew? 

Around this time the friend I had made at Oxfam had sorta faded from my life. We hadn't been spending that much time together since I stopped volunteering there and since lockdown and her new job she just ghosted the shop. We had been having some problems lately, that she was probably completely unaware of because I had given up trying to communicate it until around this time. I found that I was always the one who was messaging first - to which I usually just got emojis as an answer - or making plans. I had been ignoring how selfish and lazy I was finding her, when it came to friendship; for a long time she was one of the only people outside of my family who I spoke to a lot and physically seen.

Of course, I always had Carmen and her family but it's hard when they're not actually there. Don't worry, they're not a ghost family that I awoke whilst messing around in the occult - they're a Dutch family I accidentally adopted after messing around in the clusterfuck that is fanfiction on the internet.

Did I ever tell you kids how I met your auntie Carmen? Back in 2010-.

I'm just kidding. I'm sure I've told this story before but what matters here is that in 2022 one of my other friends was drifting out of my life and I was letting her. She knew I had volunteered at Barnardo's but she knew nothing else about it because I had not only just stopped telling her about what was going on in my life, I had stopped wanting to. 

Normally, I'd think that this was due to my depression but I knew this time that it wasn't, because I told other people. It's always sad when you lose a friend, especially when you can feel it happening. Actually, it was other friends I had found that made me realise that I deserved more than the minimalist-effort acquaintanceship that was making me feel like shit. 

In 2018 I read a book that changed my life.

But you could trace it all the way back to 2013, when I started watching Supernatural.

*Grinch grin because I got you with an unexpected flashback, suckaaah*

One of the actors in Supernatural (Misha Collins) was (until recently) married to his high school sweetheart, a woman who has written three books, so far. After reading (and loving) her first book, I moved onto her second, "The Threesome Handbook: A Practical Guide to Sleeping with Three", which is about her and her husband inviting a woman into their marriage. I had heard about the book through the fandom because - well, look at what it's about - and it wasn't because the actor advertised it, he is actually very private about it but they're different people and she wanted to write something that would help others in a way they'd never had - advice, resources, communities etc.

I had no real idea about alternatives to monogamy when I started reading it, I was just picking up her second book which sounded like an interesting study mixed in with personal experiences and observations, which is exactly the set up of her first book, "The Jet Sex: Airline Stewardesses and the Making of an American Icon." My idea of anything non-monogamous was a bunch of the God-squad living in a commune, probably stoned, and not maintaining a good relationship with hygiene. 

However, I got about halfway into her book about her and her husband talking about and stepping into non-monogamy then going on to share a girlfriend; and I stopped with my brow dipped a little and thought to myself, "This isn't how other people think? I think like this?" I distinctly remember, a few chapters later, saying, "Wait, this isn't as weird as I thought it would be." out loud. Now, full disclosure, the book was eleven years old when I read it and it showed; there was a lot of outdated advice and things missed out completely - such as a section on the use of drugs and alcohol to enhance sex yet not one mention of consent - but I got to the end of the book, sat for a few minutes and just thought about what I'd read.

I had had no prior knowledge of the phrase "relationship orientation", never mind "polyamory". 

A polyamourous relationship is one in which one or more of the participants are involved romantically or sexually with more than one individual at a time. Each person involved in the relationship consents to the situation and is aware of the non-monogamous nature.

See here. 

I won't walk you through the whole thing but it eventually occurred to me that there are LGBT+ groups in Edinburgh and all over the UK, so I wondered if there were any for polyamory in Edinburgh, just as there were a lot of groups and resources in Ms Vantoch's book, but based in America.

This lead to me, in 2018, standing outside of an LGBT+ pub that I had been in before, looking in the window and hating myself. I had walked into the pub and looked around, quickly realising that I had no idea how to recognise the group I was dipping my toe in. So I walked up to the bar and, lowering my voice, I asked if they knew where the poly group was, thankfully I was then immediately directed to the corner. However that brought up a new hurdle as I looked to the corner; I had located them but I still didn't recognise anyone from my previous - and first - attendance of the group so I had no comfortable way to approach them.

The first time, I had gone into the cafe and eventually found the small group of people, made a fool of myself - the usual - and left feeling like I had looked like a twat but I had done something huge so fuck yeah, go me.

But now, a month later, I was back standing outside the pub because I had panic-quit completely. However, rather than storming off down the road towards home and deciding I was never doing this again because it was stupid, I was stupid, and I should never be allowed outside - I lingered.

I did want to do this again, I wanted to talk to these people - and more like them - I wanted to find out more about this community and see if it was as natural a fit as it seemed. As I stood there I knew I would be so mad at myself for just going home and not going through with it. On top of that, I was really starting to think that this was the kind of life I could lead and how the hell was I supposed to communicate in such a complicated situation if I can't even walk into a pub and introduce myself to a group that is literally asking me to come and join in.

So, I tried to not let the anxiety on my face show as I turned around, went back in, right up to the bar and ordered a drink. I decided that if I ordered a drink then I had to drink it therefore I may as well sit down with it. I went around the corner and leaned down to one person on the edge of the group and said, "Excuse me, is this the poly group?" Hours later I was getting a bus home and feeling weirdly proud of myself and happy - this felt like something slotting into place and I hadn't even realised it wasn't in the right spot.

I had absolutely no idea that four years later I would be standing in the kitchen in my friends' flat - friends I met in that pub - where everyone had come from various parts of the flat to hear the story of how I started volunteering last year and just had an interview. This wasn't something I had set out to talk about, I had been talking to someone there about the hotel he managed and after mentioning, off-hand, that I had an interview that day, my friend had overheard and began admonishing me for not saying anything. There started a dominoes effect that led to everyone surrounding me and listening to this story, which I ended with the confirmation that I already had the job and to a group cheer. Yet my Oxfam friend couldn't even be bothered to ask me how life was going or how my volunteering was going. I did end up spending time with her between the interview and the new year - when we stopped talking - and she never once asked me anything about my life. Whereas, I stood in the kitchen with some people I had just met in the past few months who cared more about what I had to say than someone I had known for six years.

Sometimes circumstances lead to events that are sad and sometimes they lead to exactly what you need. And sometimes, circumstances lead to absolute fuckery.

Okay, everybody take a breath together, because this is about to get frustrating as all hell.

In fact, go get a strong drink and come back - you're gonna need it.

I had to fill in various paperwork and provide evidence back and forth with the DWP and get the okay with them to do "permitted work", which is working no more than a certain amount of hours and earning no more than a set amount. With help from Patrijca, we managed to get all of this in place before I started my job on Monday 26th of September 2022 - this date is burned into my brain for reasons that will become clearer later.

I had assumed that I would walk into work and pick up straight from where I left it the week before but I was clearly uninformed. The first two days were just Ashliegh and I struggling with technology; creating a new store associate account is a lot easier than converting a volunteer account, apparently. What usually happens with training at Barnardo's is that any new hire goes to another shop for two weeks, where they do on-the-job and online training. However, Andi had decided that my training should be done at the St Andrew's branch because it is solely a bookshop and she felt that that was the most appropriate training for me. Andi was due to go on annual leave right then so she told me to do my online training in my shop and when she came back she would send me to St Andrew's. So, I set about getting them done. I remember groaning the minute I started because I had a bookshop to run, I wanted to be out there, not in here. But it had to be done, I guess, so I started and finished it in two days. 

The fact that I had an official email address, a different set of passwords and keys on a lanyard around my neck now didn't really change anything that was going on in the day to day. Except that now I had more control over what I could and couldn't do but I also had a responsibility to back up the other store associates; meaning that I couldn't pull the "I'm just a volunteer" card whenever I was being asked to do something I didn't want to.

In June 2016, I started at Oxfam because I wanted to be a functioning member of society for as long as I was going to survive, and to know what day it was. In September 2022, I was alive and in charge of a bookshop (the dream!) and I woke up every day knowing exactly what day it was because if it was a working day I knew it before I even opened my eyes. I was up at the crack of dawn, singing in the shower and continuing whatever I was doing the night before for a display in the shop. If it wasn't a working day I was still going to keep at whatever display or initiative I was putting together, usually with coloured card and paper mache.

I won't lie - it immediately became my life. I know that that's not healthy or normal. But, put yourself in my shoes: you've read what 1991 to 2022 was like, but now I'm a functioning member of society, I'm in one of my dream jobs (and I am damn good at it), and I'm surrounded by friends who thought like I did. Not only did I seem to walk right into a brand new pillar of who I am, I looked around and found the ghost-outlines of new ones forming. It seemed like I found out new things about myself every day I worked there, every time I spoke to my friends, every time I looked inward. It was surely understandable that I wanted to cling to these pillars and never let go - and I did.

Now it's your turn to hold on tight because this is when Shit meets Fan.

On the 12th of December I came back from work to a letter that shook everything. It was from the DWP informing me that I had over-earned and not informed them so I was in trouble. It took me a while to work out - and I mean doing wages-math - what had happened and I relaxed as it seemed like all I needed to do was explain and everything would be fine.

What happened was the following: Every single Barnardo's employee is paid on the same day of every month, the 21st, (or the closest Friday in the case of bank holidays) and the pay is for the 1st of that month to the last day of the month, not date to date (for example, the 1st to the 1st, like most other people get paid). I started on Monday 26th of September which was after the 21st of September so the first week of my wages was bundled into my October wages; I was not aware this was going to happen and I wasn't aware it would make any difference as all of the letters I got from the DWP when I told them about my permitted work talked about what I earned weekly, nothing about when that was paid was mentioned at all. I knew I hadn't worked or earned any more than I was allowed to so I wasn't worried. 

The letter had said that I could call them up to explain or send them evidence however I only had ten days left to get everything to them, but given how close it was to both Christmas and the Royal Mail strike I decided to just call them. After around ninety minutes on hold I only got a few sentences into explaining before I was cut off and told I would need to send in evidence. I asked her how I was supposed to do that with Christmas and the strike coming, she informed me I could go into my nearest job centre and they would send any evidence via fax. I had completely forgotten about that and I decided to do that in my lunch hour the next day. I used to have to hand in sick notes regularly a few years ago, whilst I was waiting for an award of ESA so, not only did I know exactly where it was, I also knew that they weren't very happy in there if you turned up without an appointment - so I called them to make an appointment for the next day but was told that I didn't need to do that to just hand in evidence.

I set about getting the various wage slips from work the next day and went up to the job centre in my lunch hour without really thinking about it - it was all just a misunderstanding and it was just a case of dotting the i's and crossing the t's. When I got there I stood looking at the people that work there standing around chatting for ten minutes but I didn't say anything because it was lunch time, everyone was winding down. Eventually, I was noticed and someone came over with the question of how they could help. I explained to them that I had to send in evidence to prove that I had not overworked with a time constraint. They merely smiled and asked if I had an appointment but when I said no the smile quickly disappeared. They started telling me that they could not help me because I needed an appointment.

Just as an aside - no, you don't. You need an appointment at the job centre for any consultation or anything along those lines but you do not need an appointment to hand in evidence to be faxed to the main DWP. They just want you to go away because they're swamped. And some of them are just arseholes.

In this case I told them that I had never needed an appointment to hand in evidence before and, in fact, I had tried to make an appointment but was told that I did not need one. They gave me a condescending smile and said, "They like to do that." But, I replied with, "No, I called here specifically because I don't have time, between Christmas and the strike, to send in this evidence."

Their face completely changed and they murmured about finding someone who had time to do it and walked off. At this point, they could have just pointed me at the fax-machine and I would have done it myself but eventually they came back and took the things from me. I reiterated that this needed to be done by a certain date and they assured me that it would be and I went back to work thinking it was all over.

Oh, you sweet summer child.

That year I spent the New Year in the Netherlands with Carmen and her family because I needed a break. When I was walking back to work that Tuesday, thinking I had sorted out this problem before going on holiday I had no idea what kind of release I would need.

In October the worst had happened - Ashliegh put her notice in. Ashliegh had been through some shit since she started at Barnardo's a few years before. She was run down by us all trying to keep the shop going without a manager or getting the help or resources we needed when we asked for them. I was actually feeling awkward about that because anything I asked the area manager for I got as quickly as possible. The only thing that was delayed was my actual training because the area manager came back from her annual leave and almost immediately went away on bereavement leave. On top of feeling frazzled with it all Ashliegh and her partner were and are planning to emigrate to Australia where they have family living and she was offered a job working remotely that she could keep when they relocated across the world. In all, it was the best thing Ashliegh could have done but at the time it was the most unfair thing that has ever happened - yet anyway - and I hated every second of it.

Ashliegh and I would spend all day talking but it never slowed down the work; we walked and talked, messaged when we needed to discuss something but couldn't do the walking, and just generally caused chaos. Two volunteers who worked the area just off of the ramp at the back of the bookshop joked that it used to be so quiet in here but we quickly became a well-oiled machine. Now, she had the audacity to ruin my happy place by putting her own future first. I thought I knew her.

There was four of us in the shop with Ashliegh unofficially at the helm and suddenly there was three of us and no First Mate. The job was still the dream but it wasn't as fun running back and forth without Ashliegh there. There was a recruitment push after Ashliegh left and even up until the middle of December Ashliegh was told that any time she wanted to return she would be given her job back without question. 

Then on the 19th of December I had Covid and was at home when the area manager put out a call for an important teams call and after explaining that I was in and out of consciousness, I wouldn't be able to join in and a lot of back and forward she explained to me what it was all about.

Shandwick was closing.

I was stunned; we had been led to believe that our shop's lease was moving to permanent status after discussions with the landlord as our lease was ending. At the last minute HMV outbid us and took our shop away from us. Christmas Eve would be our last trading day and then we would be completely out by the 7th of January. Ashliegh was furious because she had seriously considered getting her old job back and all the while the Area Manager knew that there was a chance that the shop wouldn't be there. I wasn't really sure what to do but upper management did. Andi came in and started dividing up the shop; those shelves would go to Meadowbank, anything Scottish would go to St Andrews, this cleaning stuff can go to Crichton. We all boxed and bagged up clothes, books and other goods, either for the recycling centre or another shop. A few days before we got word that we were closing Andi sent a message to the distribution centre that, for the foreseeable, all book donations would go to Shandwick. A day before we were told of Shandwick's closure Craig had dropped off enough books to fill the bookshop twice over. I was finally getting somewhere.

I was.

We closed on Christmas Eve and the same team from Clydebank who helped us empty the basement came out and helped us dismantle the place. They took the time to have a go at everything we had and everything we had done. Nice folks.

Whilst everyone started boxing and bagging up the stock in the front I went into the back and started boxing up all the books; the ones that had just been delivered and then ones we already had. It was a bit bittersweet to see all of the books that Craig had just dropped off and hearing the little manager voice in the back of my head tell me what we would have done with it. 

When I started, you'll remember, I demoted the Amazon books and started using the display table... for displays. I changed them every month; September I had quickly put together an Autumn display and made a papermache tree for the wall (it dried too quick and curled a little but it was there) and wrote 'Fall into Reading'. We were so busy the only picture I have of it is from Ashliegh on a day I wasn't working because it had fallen down for the hundredth time.

In October, I set up a Halloween display with small versions of cult classic scary stories and little facts about them - such as that Frankenstein's monster wasn't actually green but yellow (exciting stuff, I know) and had a mini-display elsewhere in the shop for Black History Month. Unfortunately, I cannot find the picture of the BHM display, or the Halloween one, so enjoy closeups of the little books I made. Imagine them stuck up around the glass windows of the previous picture, and cardboard gravestones and ghosts around the scary-themed books on display.

November I used the online reading initiative 'Non-Fiction November' for a display, which was minimalist.

As well as trying to adjust our usual phrases on the windows and door (with chalk pens):

And in December my display was what some may recognise as 'A Date with a Book' where books are covered and described minimally, customers buy the book on a leap; they don't know the title they're buying, only an idea of what it's about. I did that but I called it 'Secret Santa'. However, this is where "oh, she's a reader" comes out; I researched every book I put out in this display to make sure that they were all either stand-alone stories (not part of a series) or number one in a series, because there is nothing worse than buying a book only to find out it's number fourteen in a series.

I also made a Christmas tree with paper chains and made a paper mache post box for the window, which I also don't have pictures of.

The postbox is one of the things that the Clydebank lot took their time to comment on - "Wish we had time to do things like that, but we're too busy".

Busy doing what, being arseholes?

It took me three months to make that postbox at home in my own time, three months of five minutes here and there because I didn't have time or energy. But I took my time to do it because I loved my job and, as I said before, it became my entire life for a while.

Maybe they should join Rebecca's TV club.

Our bi-fold doors were black/green glass and I also started drawing and writing on them every month (as you saw above) to reflect our display theme and also any recognition days that month, including any unofficial reading initiatives. I would find people standing and reading them, looking at the drawings. It was a nice feeling.

Something in me wanted it to be me to box up the books in the back and I still don't understand why really. Maybe it was a feeling of closure - all of this was because of the work I put in so I'll box it up and give it back to you. However, it wasn't just me that had made this bookshop a better place.

I had three volunteers in the shop - Rachel, Daisy and Paraidi.

Paraidi had started a few days before I took over so Cathryn introduced us, calling me the "bookshop manager" so I thought that was good, no confusion. And then that girl went on to ignore every single thing I said to her. She put books in the wrong place, priced everything wrong and I used to spend the next day undoing everything she did. It was so bad that I had asked the other staff to steer her into the main shop but since she was reluctant to go the supervisor and I were in the process of discussing whether to ask her to remain or not, just before we got the word that the shop was closing.

Rachel wasn't with us long but she was a student who was looking for a job and wanted more experience, she eventually went on to be employed at our Nicolson Street branch, which she has since quit. And I don't blame her.

Daisy was a fifteen year old Duke of Edinburgh volunteer, who usually tidied up the children's section, made paper chains and was terrible at letting us know if she was going to be in or not, but all told she was great. And she laughed whenever I asked her to help me hang up the new bullshit I was on that month but agreed anyway.

As I was boxing away everything I was thinking about being up a ladder with paper chains and laughing with Daisy because they wouldn't stay on the wall, trying not to let them hit any customers as they fell, Craig shouting to me that we had a delivery and Cathryn and Ashliegh telling me to be careful up the bloody ladder. 

I suspect it didn't mean as much to them as it did to me but as I took down the calendar I put up to make all the volunteers aware of upcoming displays Andi came into the stock room and asked me for a favour.

She asked if I would go to a new shop in Carlisle and sort out their book department.

Sorry, what?

At this point we had all been told what other vacancies were available for us at different shops. Beau and Suzi had already decided they were going to the two vacancies at Crichton but Suzi had decided that that meant that no one else had any right to apply for them. As Beau had a permanent contract it would leave only Suzi having to interview. When Karl - a relatively new hire - put in for Crichton too she took that personally, as if he had done that just to take her new shop away from her.

I had no want to go to Crichton as they had a basement that I knew I would struggle to access consistently so I opted for Meadowbank, which I only took because Andi told me that, since South Queensferry was now going to be the distribution centre, Meadowbank was going to be rearranged and therefore there was to be a bigger book part of it and that my job would be that, just like at Shandwick.

You can probably guess how well that went, right?

But that's season nine.

Back to the packed up stock room.

I said I would do that and she paused a little and asked me if I was sure. That they would pay for my travel, if I was okay with that.

To be frank, I had no idea where Carlisle was at that point but the job sounded too good. What had apparently happened was that the new manager for this store was delaying starting and therefore another manager was spending a few days a week there to oversee the store, which had already opened.

Remind you of any other situation? Like Cathryn coming into Edinburgh two days a week from Bathgate to supervise Shandwick because there was no manager.

I only worked three days a week, in five hour shifts. At this point I had asked to be put back down to fourteen hours since they had hired Karl and Shirley and had already been moved down to that, so Andi agreed that I would take the train to Carlisle, work, stay overnight in a hotel, go to work the next day and then take the train home. I was okay with that, I just wanted to keep working with books, it's what I understood, it's what I was good at and I was losing it. I would have done anything to hold onto it.

In the space of an hour it went from "for a couple weeks at most", to "a few months" then, when the email went out it was "for the foreseeable". Honestly, I would have done it forever, especially knowing what I do now.

A little word on the new hires. One of our volunteers went for the job and was turned down because Andi said "we don't hire volunteers". No, don't worry, you haven't misread my story or gone insane. She was clearly just bullshitting. For whatever reason, Lakshmi was not what Andi was looking for and, judging by the people she hired, I worry about what she saw in me. I have to say that I can't really say about Karl because we barely worked together however he did not leave Barnardo's a happy man (a story I'm not going to tell) and I hope he's doing well.

A brief word on Shirley. 

Shirley, Shirley, Shirley. 

I understand that when a member of your family is very ill it can impact your work and I hope she has a better circumstance now. But... she was an absolute ornament. She came in late on her first day, she came in late every single shift. At one point our hours changed, as we all knew they would when new hires started, and we went from starting at 10am to 9am, the first time she was in for that change she turned up at 10.35am and when she was asked if she was aware of the change (I was there when she was asked) she looked at us blankly and she said she did. She neither tried to pretend nor did she apologise, given that she was late for a 10am start too. When she did turn up she would spend around half an hour in the office, standing around, making coffee and generally talking with whoever else was in there (usually working on the office computer, like they were paid to do - work). 

Eventually, everyone got annoyed and she was pawned off by being asked to go to "the bank" every time she was in to bank the money, which was actually the post office. The post office was a fifteen minute walk away, so half an hour round trip. That time was how long it took me on a bad day to do the whole thing, I'm not saying that I am the least mobile person in the world but Shirley never gave any indication that she had mobility issues and she could run to the shops for a sandwich quick enough when she wanted her lunch less than an hour after she started work. However, it could often take her just under an hour to "do the banking" and often she would come back and report that she was unable to do a part of it and had to grab something and go right back. By this point, we were just glad someone else could go do the banking because the rest of us didn't have 30 minutes to waste, never mind nearly two hours. When she wasn't wandering around Edinburgh with our profits and whimsy, she was standing talking to us all about various things - her life, her old job (B&M swerved a bullet there) or even how the job wasn't as demanding as B&M. It was if you actually did the work, doll. You might think I'm being mean, there's nothing wrong with co-workers talking, Ashliegh and I talked non-stop but we always did it whilst actually working. We may stop to say something for a few minutes but I was usually holding a box or some books and Ashliegh had a ridiculous amount of clothes draped over herself and, at one point, a whole shelf unit. The thing was, we liked our jobs, we wanted to do it; but even Beau, who would rather have had any other job, was always doing something and on the move. 

Like I said, Shirley was an ornament.

During the packing up of Shandwick we unintentionally hurt Shirley's feelings but, honestly, it was a build up of someone not pulling their weight. We never actually meant to hurt her feelings though. At this point I was packing up the book department, Beau and Suzi were packing up the main shop and Cathryn was trying to pack up the office and arranging the vans - for both rubbish and moving stock to different shops. Shirley turned up over ninety minutes late to her shift and then followed me around talking about her renewed job search. At one point I was constructing boxes and filling them up, closing them up and then moving them to the area designated for the boxes for St Andrews. My problem wasn't so much that she came in late (it was Beau and Suzi she wasn't helping in my opinion and it was the supervisor's business); I didn't even mind her standing talking to me, I barely knew her and I had no evidence that she wasn't a lovely person.

My problem was she just stood there talking, if that had been Ashliegh she would have started making up boxes whilst she was talking, cutting down the time it would take me - initially on my own - to pack up the bookshop. Better yet, knowing Ashliegh, she would have been helping me all along.

Anyway, because she came in after 11am, when we started to talk of lunch just after 12 and Shirley was in Sainsbury's so we all assumed she was grabbing something quick for lunch and making up her hours. Without questioning it we all went to McDonald's for lunch, leaving her to it. Cathryn was also in the office, trying to tie something up and the Clydebank lot went for lunch on their own (they were not endearing themselves to us). When we came back Cathryn informed us that we might have upset Shirley by not asking her to go for lunch and we were all shocked, explaining what we had assumed. However, none of us went to apologise to her and we should have as it was a genuine mistake. It's not an excuse but I was fed up by the little she did and was upset about losing my dream job so I focused on myself rather than her feelings. That was selfish and I feel bad about it.

But not that much, if I'm honest.

More on her later.

In the end, Ashliegh had her new job; Shaun had his old job; Cathryn went back to being an SA at Bathgate; Suzi and Beau went to Crichton; Karl and Shirley went to Meadowbank; Helen and Eleanor decided not to volunteer elsewhere; Kimberley went on to volunteer in a cathedral, providing hot meals for anyone who didn't have one; Rachel had moved on to working at Nicolson Street; Daisy went back to school (we didn't hear from her again unfortunately so we don't know if she carried on and got her Duke of Edinburgh award, I hope she did); Paraidi went off into the ether to be useless somewhere else; Lakshmi went from volunteering with us to working for us at the Stockbridge branch (despite us not hiring volunteers); Billy ended up in charge of the van drivers; Craig carried on driving the van and doing too much every day...

And I went off to the Netherlands for New Year knowing that I was coming back to sort out Carlisle's massive book department, that was apparently as big as Shandwick's.

All throughout this I was struggling to adjust physically to my new condition (no meds, remember), mentally I felt like I was grieving something that could have been amazing and, little did I know, it was all about to get a lot worse.

Regardless of how it came about or how it ended, Shandwick was a turning point in my life; I learned a lot about myself, my talents, my abilities and my endurance. Before Billy or Andi had approached me, even before Ashliegh or Cathryn suggested I take over the department, I didn't realise I had knowledge or talent in any area, much less one that other people didn't. It didn't occur to me that knowing what the layout of a bookshop should be, what genres are worth, what books have just been published, what books are out of copyright, of reading initiatives, which publishers deal with which genres, what sells and what doesn't, was expertise that I had learned.

In the bookshop there used to be a metal display stand, up to about hip height and had three rows on it, which had Amazon books front-facing on them. Goddamn Jeff Bezos farting on more real estate. I took them off of there and designated that as the 'staff choice' shelf, any book that looked brand new, colourful and topical were put there at the doorway of the bookshop. It held around sixteen books and I would get messages on days I was off from other staff asking where the backups were and to tell me, especially one day, when they had to fill it up three times during a six hour shift. Those books were always priced at three pounds for a paperback, four for a hardback and five for graphic novels.

Those were previously priced at one pound.

On looking back at my messages to Ashliegh one day the entire shop was around seven hundred pound.

Approximately five hundred was entertainment.

Entertainment encompasses DVDs, CDs, Vinyl (which had not been refreshed or even looked at in the eleven months before I took over), maps and books.

None of that was by coincidence. I knew what I was doing and, as I learned, I had skills, yo.

I remember talking to Carmen about it when the shop closed and saying that I was damn good at that job and no one, not even me, can take that away from me.

She told me she was proud of me.

I said, "You know what, I'm proud of me too."

I wasn't just the woman with the heart problem, the woman with the mental health problems, the woman with the chronic pain condition, Sharon's youngest, Nicole's sister; I was someone who could manage a book department and run volunteers, because I had a talent for it, I had these abilities and I knew how to use them.

I don't know when it happened but during that short year, as a volunteer and a store associate, something inside me broadened to make space for more pillars than I was even aware I would ever have had in me.

In short, I grew to be a different version of myself and it couldn't be undone, even by that asshole voice in the back of your head that tries to strip you back to your base vulnerabilities and punish you for them.

I knew how to handle a sword now, come and have a go.

The future was a little uncertain but, as I watched (so so many) fireworks in the Netherlands I knew I was closing that year as a different person than the one who saw it in.

*cue the fireworks*

In the New Year I came back from the Netherlands and went to work in Carlisle, in the "absolutely massive" book department of their superstore.

Massive.

Shandwick Place had eighteen on the wall shelving units, that had seven shelves each, and two double gondolas (up to waist height), each with around six shelves on either side. That is not including the display table or the stock that was on the shelves underneath it or the staff choice shelves.

English Street, in Carlisle, had three on the wall units and eight single gondolas, each with six shelves on each side, two of the gondolas were completely full of DVDs and CDs.

This is the massive book department in Carlisle, the right side of the shop you can't see was the men's department:

I was glad to still be working with books but this felt like a huge step down for me. On top of that, they had basically been sent every book from Shandwick (that wasn't Scottish, because those went to St Andrews) and they had no stock room space for it. There was nowhere to sort the stock, nowhere to store the stock or even hope to put them in some kind of order.

I have to admit I was struggling to work one day after the other, especially as there were no volunteers to help me. A lack of volunteers was probably a good thing because there was no real system or guide to reference. 

One thing that no one had the time to invest in at Shandwick was a training plan for future business. Hell, they didn't have the time or the staff to invest in the present, never mind the future. But, a good shop should run even when the boss isn't there. To do that, it needs to have clear cut pricing, stock management and practices. Every volunteer or staff member should - in theory - be able to walk in and run the show, even if they are the only member of staff working that day, without someone supervising them. To help with these, I wrote a quick guide for how to deal with incoming stock, what the parameters were for keeping or recycling, then set out the pricing blocks and conditions, as well as how to accomplish the rest on the computer before using that stock on the shop floor. Additionally, I put up a calendar in the back and filled in when I would be working and when I would be on holiday, so that any staff member could consult it, I also encouraged the volunteers to do the same, which would eliminate their need to message us with the information. And just to be extra annoying, I hung up a table of what displays were coming up, so that anyone could keep them in mind when sorting through donations.

All of those were tools that I used to run the shop, meaning that anyone else could do the same. Even for little things no one might think they need it for, such as when certain customers would come in and ask for me because I was keeping an eye out for an item for them, the staff could tell those customers exactly when to come back to see me, if need be. They rarely actually needed to because I had a box that I would keep those items in but no one ever bothered to look in it.

Carlisle had none of these things in place either, so I changed the plan to suit their store and layout - which I had to fix - and left them with a list of what to do moving forward when I was finished.

Which I never got to do. 

In true Barnardo's fashion, I signed a new contract with them and the area manager immediately moved up to a different post, meaning that someone else took over and she had very different ideas about the future of the area.

In addition, when I got to Carlisle the acting manager had a certain way she wanted things done and then the next week, when the new manager turned up he immediately decided that things should be done how I wanted them done, so we undid everything we had already done and started setting it up how I would do it.

You can see where this is going, right?

After one week that manager quit with immediate effect, we all spoke about why but I won't say why in case it's all just rubbish gossip that couldn't be further from the truth. All I will say is, in my opinion, it was a dumb reason to quit. But that resulted in the acting manager coming back, who I really liked, and us undoing everything we had done with that manager and redoing what we had originally started. So, in all, I wasted about a month with a yo-yoing of management styles and by February, when I had actually started to make a difference and everything was slowly coming together... my new area manager decided to cut my journey over the border short.

Did you know you can get on a train, get off a train, talk to people, work in a place, and not know you've crossed into England? Apparently, I can. Bear in mind two things - the shop was on English Street and after spending my time looking at the Scotrail board and being redirected by a ticket guard, it turned out I needed a Transpennine Express train. Funny that. 

Being redirected to Meadowbank was extra devastating as she only told me whilst I was there that it would be my last day there, I was nowhere near finished and wanted to see it through. It was probably a good thing though because, only whilst being there did I realise that the law that restricts the time you can buy alcohol is only a Scotland thing. As is minimum unit pricing and Edinburgh pricing, which I figured out when a bartender had to repeat the price of a pint three times and then asked if I was, indeed, from Edinburgh. 

£2.18 for a pint of Kopparberg though... absolutely lethal.

The new area manager said that Meadowbank only had one other person working there and they really needed me back. Honestly, I didn't understand that, I could be done in about two weeks (in a rush), four (not rushing), surely that person, who had been working for four years on their own, could wait one more month? But apparently not. So, I came home and immediately buggered off again to the Netherlands before starting at Meadowbank.

All the way through this I was still trying to deal with my new condition but also a less new but just as unwelcome one.

In 2016, during the whole nearly dying palava *rolls eyes*, a lot of things started to change; not only did I need to relearn how to breathe but my body started to react to the world in ways I didn't understand. I started to be allergic to things that had never bothered me before. My beloved gluten being one of them. But also, my periods started to change.

Up until that point I had actually had a quick spell as God's favourite - take that Nicole - and had a very manageable period. Twenty-eight day cycle and seven days menstruation. Predictable, manageable and something I could function with. Very demure.

In 2016 I was put on daily aspirin by the Golden Jubilee and told to stop taking ibuprofen as it can cause internal bleeding (in anyone, sorry) but that posed a greater risk with me. Ibuprofen and I went way back. Ah, the good times we had, just us and a hot water bottle, soldiering through it together. Besties. Oh, they were there for the migraines too. Absolute hero. Around that time is when I noticed my period pain getting worse, my cycle duration fluctuating and my flow getting heavier. I just figured that starting a blood thinner and stopping my love affair with ibuprofen was a perfect storm and to be blamed for this weird shift. I know periods change, go AWOL and the moon has a lot to answer for in its bullying of those with wombs, but this wasn't just a shift in the weather.

It all came to a bit of a head when I went for a smear test. I had been to one of them before this appointment - for myself, I wasn't just spectating - and while I would rather be anywhere else than naked from the waist down with my feet touching my butt cheeks in broad daylight whilst the nurse between my legs asks me if I've had a nice weekend right after asking me what my discharge is like, they don't hurt. This is one of the things they really should emphasise to anyone that needs to get one of these; smears do not hurt. I'm sure that the main thing that puts people off is actually the process and not the possibility of pain but it might help people to relax about going if they know that, if done properly, it's just uncomfortable and cringey. However, this time I screamed in pain. I know what you're thinking, people say that but they didn't. I did. I was mortified because I didn't hold onto pain until I couldn't bear it anymore, I was in pain and I was holding it, but she hit a nerve and I screamed. She could not even get the speculum in, I was too sensitive. 

Why are you telling me, Taylor? When did we go on this side quest?

Well, because if I'm being dragged on it and you're reading this then you agreed to come on it with me. And the reason being that, after a lot of talking and waiting for appointments, I was given a presumptive diagnosis of endometriosis.

For the folks that don't know, endometriosis is where lining from the womb grows outside of the womb. It hurts because it essentially still menstruates. The pain from all periods is your womb contracting, using oxygen to dislodge the tissue so that it can be expelled as it has no further use after no pregnancy. Your womb is essentially going, "ew, get it off" and she's so right. Additionally, there is no test for endometriosis so you have to take the plunge and go under the knife with no guarantee that they'll find it, be able to remove all of the wayward tissue or that it won't grow back. Unless, of course, you have some reason why a hospital would not want to take that plunge. Such as... *drum roll* a fucking heart condition. That is where the "presumptive" diagnosis comes from - they're pretty confident but they can't peak behind the curtain without the possibility of burning the whole theatre down.

Very quickly, as if panicked into escalating the mission by being discovered, my endometriosis went ahead full-steam and settled in for a long stay. The bastard is still here, fucking up my shit and quickly getting me into trouble at Meadowbank.

I don't even remember starting at Meadowbank except for walking in and asking the manager for the manager. I do however remember the phone call we had just before I started because it ruined my future at Barnardo's. After a phone call from the new area manager who informed me that whilst South Queensferry would be the new distribution centre for this area, the setting of Meadowbank would not be changing, therefore there would not be an expanded book area and I would be expected to do the job that everyone else was doing. But of course I was to talk to the manager first. Which I did, and she told me that they had a volunteer that took care of the books and she needed more staff working the main shop. I remember hanging up and wondering if I should quit right there. I was actually angry about it all; I had lost my shop, I had lost my dream job, I have been pulled away from Carlisle before finishing what I went there to do, only to come to Meadowbank and find out I'd been missold that job.

Whilst I had been at Carlisle, living my best cheap alcohol induced, English life, Karl and Shirley had started at Meadowbank. This, I found out once I was a few shifts in and it pissed me off to no end, because the manager wasn't on her own and in desperate need of help, I could have finished what I was sent out to do at Carlisle. Additionally, I was welcome in Carlisle, the (minimal) staff there (two, for a whole superstore) were very friendly and embracing. Gerry and the barely-out-of-school guy (whose name I have completely forgotten) were doing the best they could but with a two story superstore on their own there was only so much their best would cover. As a result they were probably glad for just about any help but the acting manager contacted my area manager on multiple occasions to request me again for different shops in her area and was told no. Because I was clearly so needed at Meadowbank. Whatever. If they had offered me a job travelling the country fixing their neglected book departments and training their staff and volunteers, I would have bit their hand off.

As it was, they had discovered - due to mistakes and accounting - that Karl could not handle the till on his own as his maths wasn't up to the level needed to disperse change. Beau had commented that he took a long time to do any task so when he struggled on the till she just thought it was the speed he learned. at one point she complained to me (not seriously, just baffled) that she had asked me to tag and put out a basket of hats (max twenty) three hours ago and he had competed three. We mused as to whether the till had just been busy or overwhelming and he'd forgotten. She shrugged but over a week later informed me that, no, that was not the problem. The manager moaned to everyone bar Karl (that I witnessed) about this, as if that was appropriate - I'm rubbish at maths and that is just who I am but it was established that he had a genuinely learning delay with this and therefore she should not have complained, least of all to store associated whilst volunteers where standing beside us, involved in the same conversation.

One thing that did make me smile a little - schadenfreude in action - was that eventually Shirley's name came up in conversation - when I was roped into doing the rotas because the manager was computer illiterate. It was mentioned that I could ignore her name as an option on the rota so, of course, I enquired as to whether she had started. You know when someone laughs in response and you just know that there is a juicy story behind it.

Well, here it is.

The first day Shirley started was her last.

The manager told me she immediately hated her. And apparently Shirley had started before Karl so she was to the manager's rescue of four years of working on her own, with only volunteers to fall back on. At Shandwick we had a clear box under the till for when someone brought up clothes to purchase and we could put the hangers until there, tucked away, and it also had an added use of providing the front of the shop with hangers to hand if and when we needed them. However, at Meadowbank the same system was on a table in front of the till, meaning that whoever came up to purchase anything were to put them in there themselves. Now, I thought it was untidy but it had probably come out of her working on her own and trying to keep up. 

It is worth bearing in mind that Meadowbank was the distribution centre for the whole of Edinburgh until I started working there. So, every donation meant for Edinburgh was sent there. And when I say it was sent there, it was sent there to be sorted, so all in bags and not yet looked at. So whilst running a shop, they were also going through all of the donations and trying to assess what was saleable, what was worth sending to eBay, and what shop would be best suited to send anything to.

To explain more, St Andrews got all of Shandwick's books about Scotland because they would have a better chance of selling there than in Leith, they might still sell in Leith but we wanted to maximise the chance and maximise the amount we could charge. As I said, at Shandwick I was charging £2 up to £6 each for books, depending on their genre and condition, and couldn't fill up the shelves fast enough. However, at Meadowbank it was four books for £1 and, whilst they sold, they would not have sold at Shandwick prices. 

So I can understand if putting the hanger box in front of the till made things a little easier but it was ugly.

Apparently, Shirley also thought so, as on her first day she decided that needed to change. She put the hangers under the till and put the table it sat on... in the bin. Inside the shop there were two big Taylor bins like you'd see on the street, and weekly we navigated getting them out of our front double doors before the bin men could wreck the place or run anyone over with them - almost happened once. The only thing that saved it all in time was the van driver - enter Craig - watching her do it and informing the manager.

Now, not to stick up for Shirley here - because why would I - but ordinarily I would say that at Shandwick everyone was so used to just doing away without the okay from a manager that I could see it being a hard adjustment to make. When I went to Carlisle the acting manager coming over and telling me to do certain things started to grind on me a little because I thought, "Why does she keep asking me to do things and interrupting the one thing I came here to do?" and whilst I had a point about being dragged away from the books to help put up a banner, it occurred to me that whoops actually she's my manager and I work in this whole shop too, the way I was treated at Shandwick was a luxury they extended. However, I never once saw Shirley do anything, never mind take initiative to fix an issue, so she didn't even have the excuse of being accustomed to it. 

Who walks into someone else's house and starts rearranging the place? The manager had worked there for ten years, the last four on her own - it's her house. Some of the volunteers had been there longer than that. If it really bothered you, maybe one day ask why it wasn't under the till instead, maybe suggest it. You do not come in for your first shift-

LATE BY THE WAY

- and then start dismantling the place.

Absolute cheek.

Apparently it did not get better from there. Instead of being embarrassed and humbled she took umbridge to being questioned. She loudly said, "Can I not change anything, like?" Girl, no, not on your first day and not like that?! She then apparently barely did anything and her attitude wasn't great, although I have no specifics on that. However, the manager called the area manager that very day and said, "I don't want her back". She went on sick leave due to the unfortunate circumstances at home and her temporary six month contract that she had signed in January was not renewed - so she got paid for six months after working one shift.

Karl left a few months later, due to [redacted]. 

So, kids... let's recap - stumbled into my dream job whilst I was trying to assimilate to a life with another chronic condition only to lose said dream job and end up in completely different job that was to test my new condition in ways I barely managed to survive daily. Couldn't get much worse, right?

*enter the villain, shrouded in black, cackling as the light reveals their identity*

That's right, kids...

The DWP.

Previously on the DWP:

I had received the letter from them accusing me of over-earning when, in fact, it was all because of the way Barnardo's chooses to pay its employees, but I had had the Job Centre fax in evidence of what I'd earned and an explanation. Everything was going to work out fine, right?

*DWP smirks*

So, in January I received a letter that I was not expecting. It informed me that because I had failed to send in the evidence I'd said I would that they were to make their decision based on the information they already had and now I owed them money.

What the actual fuck.

I remember trying not to panic, this will all be cleared up. I was also frustrated because for God's sake, I'd already dealt with this and if anyone there had used any of their brain cells I wouldn't have to put up with this crap. I didn't really know what to do at this point or where to start. Eventually I figured that the first thing to do would be to make sure they'd received my evidence, so I called the DWP and did my time on hold. When I had finally gotten through I was told that the evidence was received in January on the first working day of the year and since that was after the deadline I had it would only be considered if I asked for a mandatory reconsideration. 

What the actual fucking fuck?

What had happened is that the good people at the Job Centre, knowing it'd had a deadline, let my evidence sit around all the way to the Christmas break, through Christmas and New Year and then graced the fax machine with their presence on their first day back. Because of that, I had been denied a layer of appeal on this notice, as the first layer - when I was asked for an explanation - went by without any additional information. 

This whole period of time felt like a fever dream - I knew I hadn't done anything wrong, it made sense and yet here I was phoning the welfare advice team again because the DWP couldn't use common sense? I would be in my flat and find myself suddenly standing in a corner staring at the wall, I was burning food, knocking things over and just generally not able to function. I was waking up in the middle of the night with a panicked feeling that there was something I needed to be doing. All the way through this I was in pain with my hEDS and my endometriosis too. Oh, and everything else.

Did you think we were done with the flashbacks? Annoying, huh? *shit-eating grin*

So, I moved to my own studio flat in September 2020 and my own personal hell erupted in my body. When I said that, after my surgery in 2016, I had become allergic to things that had not bothered me before, I was constantly trying to figure it out even into my new flat. So when I woke up that first spring in absolute hell I put it down to another chapter in the torture that was still being alive. To this day I have to take antihistamines almost every day and stronger ones in the spring as every inch of my skin itches every single moment I'm breathing.

What I could have done without was the constant stream of crap that started running down the back of my throat.

Ew, Taylor, what the fuck?

Oh, I know. Believe me. If you've never heard of a post-nasal drip, good for you... I'm about to ruin your life. It's only fair, okay? Basically, everything that sits in your nose to make it possible to breathe collects and runs down the back of your throat. Now, when I was on my acne meds it dried up all secretions from your body - I barely ever needed to wash my hair, it was great. The cracking and bleeding skin, inability to swallow and thickening hair everywhere I could have done without. Another side effect was that my nose got so dry it would bleed, dry then bleed again as I tried to clean the dried blood out, as a result I was putting Vaseline into my nose every few minutes every day, a habit I never really broke out of - I would wipe my nose to the point of bleeding and then put Vaseline up it because now it was too dry. When my nose started ejecting its mucus load down the back of the throat I assumed it was build up of Vaseline I no longer needed and stopped doing it, I quickly learned that I could breathe without bleeding first but also it wasn't the cause of my new problem.

It sounds like a small thing, right?

It wasn't and isn't. That's right, I still have it. Why? Because another term for it is chronic rhinitis and it is very common in people with... *perfunctory drum roll* Ehlers Danlos syndrome!

We all laughed at the song about all the bones in the body being connected but, shit, everything really is connected, huh? At the beginning of this, if I'd have told you that I could connect my feet to the back of my throat, you wouldn't have believed me, right? Or a comment my ex boyfriend made fourteen years ago about why my skin was so smooth.

What about this? People with EDS find that certain medications are less effective, to the point that I have a medical alert wristband. Some of these medications include anaesthetics.

If your jaw did not just drop then you have noooooot been reading my past posts. My entire life doctors and other medical staff have been baffled by how ineffective general anaesthetics (GA) have been for me. If you don't know, when I was a child in the old Sick Kids at the Meadows I was given GA for a procedure and the person scheduled for after me had to be taken first as I showed no signs of passing out anytime soon. In fact, just today I saw a memory on my Facebook that reminded me that the night before my surgery they gave me medication to knock me out so that I would sleep the night before the surgery and not stay up all night worrying - something they do to everyone - and instead I just got high and spent all night texting my sister utter incomprehensible bullshit before passing out in the early hours of the morning. It also probably explains how I was able, despite being on stronger meds because they were aware of my Asgardian immunity, to get off of the gurney and go for a quick (if unstable) pee before we left. I should not have been able to do that.

But back to the hell from within.

The taste is not something I would recommend and the sudden feeling of pure panic as it hangs (and blocks) the nasopharynx - which is where your nose meets your throat and opens into your mouth - is not pleasant either. I have vomited from washing my nose out with so much sea water to attempt to unblock it. I wake up in the night, where I sleep practically sitting up, coughing and gasping, tripping over my weak ankles into walls and doors trying to get to the bathroom to clear the blockage. As it currently stands, I am waiting for an appointment to the ear, nose and throat clinic within the NHS, which I am heartened to hear will "most probably not be able to do anything about it". So positive.

Honestly, I'm not sure if it was this taste (which really puts you off eating, unsurprisingly), the sheer and utter hatred of my job, the physical toll it was having or the stress of the DWP's torture campaign but in a short four months, I lost two stone in weight. People argue that it had to have started before that but I know very well that it didn't for two simple reasons - I was weighing myself every night and day, and Suzi had said, just before we closed, that she had started in the July and lost nearly a stone and I remember thinking, "I started last year and I'm still fat as fuck".

I weighed myself twice a day, as I said, for no reason other than - in a very neurodivergent way - if something is not in front of me continually I forget it exists. However, if something is in front of me continuously I no longer see it, there needs to be breaks in its cameos so that it feels new. It became a regular thing, friends and family would immediately comment on it and I couldn't really argue - after all, I was looking at the reduction in numbers day and night, but I looked in the mirror and could not see what they see. After some time I even looked at pictures from six to twelve months before and, to me, I look exactly the same, even now. But, I can't deny that I had to replace my clothes because, in my mother's words, they were "hanging off of" me. I think the day where I had to admit something was happening was when I gave up and had to have the two rings I always wear resized as I could not keep them on my fingers. Who loses weight in their thumbs?!

Either way, I started to feel a little bit happier in my body which I hated. I never want to be someone who puts any kind of meaning to lbs, but either way I felt better as my dress-size dropped and I also felt, as much as I hated my job and it was killing me, I was part of society again. I was working twice a week, talking to people every day and developing on the kinds of social skills you really only get in customer service. On top of it, I was trying to remind myself that eventually the pacing I was trying would turn in my favour and the pain wouldn't be so bad anymore. One day. Hopefully soon. Right? 

For those unfamiliar with the concept of pacing, don't worry, I wasn't either. Everyone will know the general idea of pacing, but not when it comes to chronic pain. The main deal with chronic pain in general and hEDS specifically is that there is a certain delay on the returns of the day. By that I mean that, if  you remember, I explained how my pain works - I would go to work and by the time I came home I couldn't walk before the pain started - and that is the crux of the matter. You have no idea that you've overdone it whilst you're doing it. If you're running and your body has had enough it will tell you; you'll have to stop to catch your breath, you'll get cramp, you'll feel your muscles screaming that you've had enough. You don't get that with hEDS. Don't misunderstand me, we don't become immune to the usual messages from your body, they all still happen, but when you've overdone it from a hEDS point of view your body just soldiers on through. 

The way I understand it, what the rheumatologist said about the body being tense and building up nervous energy is so important because this tension and energy hide the pain; it's like needing the toilet but there won't be one for an hour, you might be bursting but you know there's no point in thinking about it because you can't fix it. So you distract yourself, you carry on, you keep up your conversation. Finally, a toilet is near... and suddenly you're about to pee yourself and you have to run.

The same concept is what emergency workers fear.

Stay with me.

Have you ever watched any "close calls" type of programs. Someone will have been in a lifeboat for eight hours before being rescued. What happens for eight hours is that your body is pumping adrenaline around, trying to keep you awake, alert, your heart pumping. As soon as you see the helicopter on the horizon you know you''re being rescued. And so does your body. So you don't need that adrenaline anymore, right? *sound of a tap being shut off* So then, what happens, is all of the stuff it was masking comes out - your heart rate lowers and if you've been out in freezing cold waters for eight hours it might keep lowering; your dehydration suddenly shows in your thinking, your organ function including your heart and lungs; you might even go into shock from the state your body is in and the sudden withdrawal of eight hours of adrenaline. So much more would happen, but you get the point, right?

That's what happens, the nervous energy literally holding your body together... stops.

So, what I spent the past two years doing was learning where the line of 'over doing it' was in my body, which isn't as easy as it may sound. You can only find that line by, unfortunately, trial and error. You have to overdo it to learn how to not overdo it. Even that is not as simple as it sounds. The things that really help this condition is sleep, hydration and movement. You heard me right. I have to keep moving to find the balance. I have to move a little today so that I can move tomorrow, but I have to find the line so as not to do too much or I won't be able to do anything tomorrow, which means that I'll struggle for the next fortnight to find the line again, as I will still be trying to recover from the aftertaste of doing too much that one time. Harder still is figuring out the energy cost to my body that each task has.

Taylor, you're making it harder than it seems. You're being dramatic again.

Am I?

Let us take a journey. You get up in the morning, grunt as you get in a shower, get ready, have breakfast, get in your mode of transport and go to work. Simple, huh? Okay, so let's say one night, whilst you are cosy and dead to the world, your street has a powercut and your alarm doesn't go off (imagine it's the 90s when no one relied on their phones for alarms and we plugged them in, like grown ups). You wake up an hour later, you don't have time to shower, you get dressed in a rush whilst letting someone at work know what's going on, you have your clothes ready so you just need to shove them on, get in your transport, grab something in the shop nearest your work and start the day flustered. That will affect that day, possibly tomorrow but your week is fine, right?

Okay, now imagine that your alarm goes off but you wake up to find out your water isn't coming on. No shower, no coffee, but your day will be relatively unaffected, you get a coffee at work and call the water company in your lunch, they're going to come out this afternoon or tomorrow morning, your hygiene will survive. Your day stays relatively in tact but the next couple of days might be a bit off.

And now, imagine that you wake up in the morning on time, your shower works, but you find out that your dog has gone insane over night and destroyed the clothes you've left out for work. Now what? You might have some extras that just need ironed or maybe nothing has been washed so you find the most recent ones, get out the trusty frebreeze and see what can be done there. If they're salvagable, you're golden but you are going to have to figure out what is going on with your dog who is usually an absolute angel. If they're not then it's casual Tuesday and everyone just accepts that sometimes life sucks and you're usually good for it. You might have to stop by a shop on your way home and grab more office clothes and possibly talk to a vet but otherwise, your week is fine.

Reset again. What if, touch wood, you wake up to a phone call that a member of your family has died. You'd be devastated, most probably call in to work and take the day or week off. You'd have to go and see other members, or you'd sit in shock for the rest of the day. Showers are no longer a thing you need to concern yourself with ever again and you forget that you need food until you blink and it's three in the afternoon, that headache suddenly making more sense. But, do you really care about the headache or the food or the shower. The dog has been barking at the back door for hours and is now hiding because he couldn't wait and is worried about being in trouble for what he did on the hall floor. You didn't even see it as you nearly stood in it and you wouldn't clean it up if you did. What would be the point? What did anything matter now.

Let's reset one more time. You don't sleep the night before, you're tossing and turning. Maybe it's a headache, maybe it's caffeine or maybe that angel dog just won't stop moving around and licking himself. Either way you drag yourself out of bed, into a shower - where you stand under the water for long enough to question capitalism and dog ownership. You go downstairs after deciding that you don't care about your hair and hey, I'm dressed aren't I. You put the coffee on first and grab the biggest cup because fuck you, that's why. You grab something, anything, to eat and get in your car or get to the bus stop. Imagine trying to drive in the morning rush hour or dealing with the guy next to you laughing into his phone whilst the guy behind you coughs without covering his mouth. There's a smudge on the window as well and even though it has no bearing on your day you hate whoever made it with a passion. In fact, why wasn't this bus cleaned properly. Why are there other people on it? Why is the guy who just cut you up honking at you, the fucker? And when you get to work there's Hannah... that bitch. Normally you can tolerate her happy, 'isn't life wonderful' tone and survive but today she's doing it on purpose as she tells a story about one night her dog kept her up and they almost missed their flight to Rio. Great story, Hannah, but we both work in the same job so how the fuck are you affording that. Fucking cow. And no, this email did not find me well, fuck you Stephen from Head Office. Prick. Can't wait for lunch. Oh and of course I have whatsapp messages because I can't get two minutes to myself and here is Pam, coming over to ask me another stupid question about Excel. Yeah, no worries, I'll do your job for you. How did she even get this job? Why am I even here, I hate this place. God, I'm not like this, I just need to sleep. Or, I need to just not get water all over my trousers in the toilet. Great. Fuck today. I was going to paint the fence when I get home but now I might strangle the dog instead. And a takeaway. Ooh, I forgot about that new series I was going to watch... ugh but I should do the fence. Bloody dog needs walked first though. Fuck it, I'll take him around the block, if he wanted to go to the park he should have shut the fuck up at 3am when I told him to. 

Now, you might think, Taylor, that's not how it works. And you're right, that's not always how days snowball, but... it's an analogy, Brian, keep up. All of these different changes in your day can have knock on effects. Also imagine this, the dog keeps you up all night so you give up, get up and start your day off an hour before you usually do. You go to work early and everyone comments on it so you tell them about it. They all tell their stories and you have an extra coffee. The day isn't really that affected except that you're exhausted. But that night you go home, you take the dog for a longer walk, maybe even a run, to tire him out. You do cook that night. You do everything you were planning to do, with just minor adjustments. And then, that night, whilst Bones drools in his run-induced slumber on the floor, you are staring at the ceiling regretting that extra coffee.

Everything you do have an energy bill and it's this bill that needs to be paid that runs my life. Sometimes I spend more than I have but I don't know until the end of the day, possibly the next, when bills come due. But did you see how the same thing - the dog being up all night - can cause different issues? Being in a mood all day, not having the energy to walk the dog properly, ordering a takeaway instead of cooking, going to bed early, drinking more coffee.

One last go round, I promise.

How do you think that same scenario would play out if you were out until 1am drinking the night before? What about if you were rested, calm and content in a warm bed by 9pm instead? What if there was a big meeting at work so of course Bones chose that night to start his shit.

The same task can have different energy bills and consequences depending on literally everything else.

I've started to think of it as a road closure. If you know about it you'd plan ahead - but also, so would everyone else. If you didn't know about you can be stuck in traffic, annoyed that you'll be late and denouncing all governments. Some roadworks might be full blown stand-still, call into the radio so everyone knows or they might be just minor inconveniences that don't hold you up that long and you barely even think about until you're driving home and remember.

Just like that roadwork will affect you differently at 8am going to work than it would at 3pm just going a drive.

So, not only do people with chronic pain need to learn their overdoing it line and what each activity costs them, they need to learn what each activity's scale of cost is, depending on every other variable in their day. It's not an easy thing to learn, because there is no end to learning it. It will always be able to change on you at any moment. I am two years in and, thankfully, I don't have many instances of the painful spasms in my core anymore, but when they do show up it feels like they hit worse. I wasn't expecting them and they're not my normal every day anymore. When they were, it was like trying to swim in maelstrom type waters, it was constant. Now, it's like lying in a fishing boat, my feet up and my hat over my eyes, taking a doze, when suddenly a tornado hits.

That's what pacing does for you. I recently was dragged into an online "pelvic pain" class with the NHS and, honestly, I just watch TV throughout it. It's absolutely useless to me, the only reason I attend is because the NHS does not take you seriously unless you jump through all the hoops it wants you to first. And this is one of them. Now, I'm not having a go at this stuff, it could very well help everyone. But whilst they were talking about pacing with pelvic pain I got so confused I actually participated and asked how that could be applied to pelvic pain. From their answer it became very clear, very quickly, that it could not be applied to me. Pacing with pelvic pain was for people who could function on a day-to-day basis despite their pain; it might not be very good function and the struggle might be very very real. But... for the first two days of my period I genuinely cannot walk. I'm not being overdramatic, I have to hold onto furniture to drag myself from room to room, on a good day. On a bad day, I'm crawling. Every single month I am putting myself into the recovery position on the bathroom floor because I don't know if I'm going to pass out or vomit or both. So, when they're saying that pacing involves trying to find the balance, like whether exercise is a good thing or if it's exhausting all of your energy resources I wanted to scream. I wish those were my concerns. I don't need to pace that because I'm not doing anything but trying to stay conscious for two days and ending up with a sore jaw from biting into cushions and blankets as I'm screaming. I spend the next few days, once I can get up, treated the boils on my stomach from hot water bottles and going to the shops because I couldn't leave the house for the past two or three days. Which has it's own drawbacks, because that overdoing it line has an equally evil twin - underdoing it.

When I was being pulled back from Carlisle, a part of me knew that this was not going to work out for me. I knew already that this was not the job I was sold and that I was going to hate it. So, I decided on a whim to volunteer somewhere with books, glorious books! From driving around with my mum I knew that there was a bookshop ran by the Bethany Christian Trust, somewhere, but I have no sense of direction so I had no idea where. I could see the street in my head but I didn't know the area so I googled it and it offered me Hamilton Place - which is not where I was thinking but I didn't know that at the time - so I emailed them about volunteering there, fairly confident that my resume so far would be a good addition. So, I filled in the forms in January and forgot all about it until April when I thought it odd that no one had gotten back to me. I emailed again and was immediately answered, apologised to and had a meeting with the co-ordinator on Teams. My main worry was the fact that, not only am I an atheist, I am LGBT+, however I was reassured - without actually asking - that the shop and the trust was inclusive and thankful for any and all help. It did not feel like a "it's okay sinner, we accept you" speech so that was extra nice. I started in the May, quickly starting on a Saturday as that was one of the days I had never been asked to work, my days were set in stone and that wasn't about to change. Right?

One thing I learned from Barnardo's - don't tell your co-workers or boss SHIT about your life. I mentioned the Bethany shop in passing one day and they used it against me for the rest of my time there. It's too long of a story to start in the middle of this absolute bible, but let's just say I was bullied into working shifts I didn't want to because I had the time to volunteer. Despite being disabled everyone there always commented, in a backhanded way, about my being part-time. It was ridiculous that I was made to feel like I was lazy and awkward because I had a life outside of my job and because I only spent two days there. Customers were not exempt from this bullshit either. One day, a woman came in asking if she could use our microwave for some medicine she had, the manager let her, I wouldn't have because we have no idea what she's taking back there. I went with her to show her the microwave and stood with her. I was encouraged by the manager to leave her be but I refused, our things were back there, I was not letting some random stranger be near my valuables, thank you. This woman asked me how many days I worked, I said two and she then asked me if I was a student. When I said no she paused and said, "So why are you part-time?" with a look on her face of confusion.

Listen, customer service people are paid to be nice to you, it's literally part of the job description and the ability to do so is something very hard to learn. We are not your friend, we don't need to tell you anything, don't ask us personal details, I can't leave this space. Yes, I could have walked away and left her there, in the back, taking random medicine amongst our belongings, but her being a bitch is not my problem so if she wants to make it awkward then let's go. I work here, you do not.

So I said, "Because I do." and she continued with why; do you have kids; do you do this and this. I just kept up with, because I do; no; no; no. 

Oh, and sidebar, men... we're not flirting with you. Men (not all, I know) seem to think that women being nice to them is flirting, it's not. One, we're being civil; two, we're protecting ourselves because people have literally been killed for being assertive or rejecting men; and three, it's not in my nature to be needlessly nasty. But I can. When I first moved into my flat I had a rather unsettling encounter with a guy in the area who, long story short, followed me to talk to me at 10pm at night. I wasn't nasty that night, but I was rude. At work, the amount of men who think that because you smile and talk to them you're interested is so worrying it's worth a psychological and sociological study. At one point, waiting to close up, this man would not leave me alone. Thankfully, as it was closing time, our friendly neighbourhood van driver Craig was there and his non-nonsense nature was very helpful when he said, "That's you, pal, goodnight" and opened the door for him.

Victorija, who had helpfully disappeared into the back (no honour amongst women, I guess, not that it's her responsibility) came back out as Craig and her started laughing. "You have a friend there," she said.

That man was very clearly in his fifties and I wish that was the creepiest thing that ever happened. There was an instance with a man in his seventies when I was a volunteer at Shandwick which was the first time I ever felt unsupported amongst them as I mentioned it over and over again and everyone just kinda shrugged. Bear in mind the very important part - I was a volunteer. I was the responsibility of the store associates and manager (supervisor in this case) and no one even tried to help me. Eventually he came in one day and I had been on the till - where he had literally trapped me before, as it was an L-shaped desk against a corner wall - and I went into the back and stood there, telling Ashliegh and Beau he was back. No one batted an eyelid, they just kept talking about whatever it was (not an emergency, I remember), eventually Beau asked who was on the till. I replied no one because I just told you, I'm not going out there until he goes away. They rolled their eyes and Beau made her way out.

I ended up loving working there, as you know, and Ashliegh and I got on very well but that day I felt invisible, unimportant and unsupported. They eventually, one day, decided that they would bar this man but, of course, he never came back in. Sod's law.

At Meadowbank, I have had other customers come to my aid with overbearing men and aggressive customers and that is not how anything should be. When I was a volunteer and myself and Craig came to Ashliegh's defence we should not have had to do that. But what I learned when I started working for Barnardo's is that there is no training apropos confrontation; we're taught not to challenge shoplifters and call the police, we're told to call the police if we're threatened but not to be a hero. We are not told what to do if a seventy year old man corners you (or a volunteer) in a desk that you cannot get out of and tries to touch your arse. We are not told what to do if the van driver isn't there and a man in his fifties thinks your customer service voice is your siren song. We're not told what to do if a man starts ranting and raving about your hair colour and why people can't be honest anymore. We're not told what to do when a customer is being subtly racist to your colleague. We're not told what to do when anything other than a sale happens.

But in the May and June of 2023 I had started working one day a week at the Bethany Bookshop and I was loving it. I came in with, as my co-worker calls it, "new job energy". I was ready to put in all the energy I had at Shandwick and have this be my happy place. It still is but it's not my bookshop so I've let go of all of that, I still enjoy it and I still have ideas and pitch in but mostly, it's about being around like-minded people, just like my poly group. However, when I got covid whilst working at Barnardo's and volunteering at the Bethany bookshop I could not go to either for a week and a half; out of ten days, five of those should have been work or volunteering days. When I tested negative I went back to work and was hit in the face by life.

I got to work, first as usual, went into the back, straight to the toilet, where I locked the door and burst out crying. I was in so much pain already but that wasn't really why I was crying; it was because I recognised this stage and it was from months ago. I had done all of that work, went through all of those tears and pain and ten days of letting my body recovery from illness could set me back months.

That 'under-doing it' line is a heartless bitch.

As is gravity.

One of the things I don't even notice anymore is all the things I look out for every day that indicate my heart health.

When I was back and forward about getting the covid vaccination I spoke to the team in Glasgow. Elaine, one of the SACCS nurses you may remember from my older posts said something that made me confident in choosing to get the controversial vaccine. I was worried about reports of women in their thirties having internal bleeding. She said that covid is still unknown, in terms of treatment, and people are dying - we even knew one of those unfortunate people who died as a result of covvid - and I am at an increased risk. However, I'm already looking out for signs of internal bleeding without even knowing it, and they know how to treat internal bleeding... they were not sure about covid and covid in someone with an existing condition was an even more precarious situation. Fair point, I got the vaccine.

Every single morning, either when I'm on the toilet or when I'm putting shoes on I squeeze my ankles to check for swelling, I do this at night too and any time I take shoes or socks off. It's unconscious and I don't even realise I'm doing it anymore. I went into a procedure a while ago and there was another girl in the room with me, it was her first cardiac catheter and she had only recently been diagnosed, she was taking it in her stride and being a pharmacist probably helped with that. What stuck out for me was that she was wearing makeup and nail polish. When going for any procedure - but especially anything cardiac - the medial professionals are assessing you in ways you would never think of - pallor and nail colouring is one of those things, they tell you a lot about your circulation and heart health, as well as general health. Where possible, never wear make-up or nail polish to a medical appointment. Every morning I am unconsciously clocking these too and all throughout the day; when I'm cold my lips can go blue, my nails turn more purple as well. When I have a migraine or bad headache my face can go slightly purple and when I was a baby, undiagnosed and ill, my cheeks were bright red (which is a symptom of Fallot's). Everybody assesses these things too, I'm not special there. You might look at someone and think that their colouring looks like they might faint, vomit, or that they're too hot. You have that information in your brain and you assessed it without even thinking. You also assess yourself internally in ways that no one can automatically tell. Someone might ask if you're tired and you're not aware it's showing but you will feel it long before it shows.

Your health is the exact same. You will have abdominal pains or twinges before someone notices you look nauseous. I will sometimes get random pains - it might be chest pain, lung pain or even circulation pain. You might be thinking, "what now?" but you also get that kind of pain. It's very similar to a stitch but I usually get it in my arms (which can freak you out), clavicle or legs.

One thing I get a lot is symptoms of heart rate changes - it might things going black around the edges of my vision when I stand up too quick, randomly feeling faint for a split second, palpitations, heat-beat skipping, among others. A lot of the time these are just random moments or easily explained such as having too much caffeine.

I should have broken this to you guys a lot sooner than this but I was avoiding it. It's so hard to talk about.

Caffeine and I have gone our separate ways. Mostly.

When I started at Meadowbank, one of the days I ended up doing - when the rota unexpectedly changed and I was punished for being busy on a Saturday - was a Sunday. This resulted in a few weekends where I would go out with my friends on a Saturday and then go to work on a Sunday. It wasn't usually a problem, for the past fifteen years I had been in a serious relationship with insomnia - I would be up for (my highscore) thirty-eight hours straight (or queer) and then sleep for twelve hours. lather, rinse, repeat. But one Saturday in June 2023, I got up at 5am for Pride - having taken the day off of the Bethany Shop just for that purpose - went to Pride and then after wards got dragged along with my mates to a nightout which had gone on to one of their flat's near the Cowgate. I left there at 6am, walked home, jumped in a quick shower, got food and went to work in clothes that did not smell like alcohol (hopefully).

I remember it was Kirsty and I that day. Kirsty was so funny. She was a nineteen year old new hire (as was Victorija) and she made me feel so old every time. I remember my old Oxfam manager had commented to myself and my friend (who I feel out of touch with) that despite there only being ten years between us we made him feel so old. I didn't get it until working with Kirsty and I even messaged him to tell him, to his *evil rubbing hands together* delight. All I had against her was experience, particularly with alcohol. I am by no means a tank when it comes to alcohol but I can hold my own, usually. I have never understood people who go out with the express purpose of getting absolutely blootered, each to their own but it probably comes from childhood experiences with anaesthetics (when they did work) and the lack of control over your own body in a situation you don't really understand. As a result, I don't drink to get drunk, I drink because I like the taste of what I'm drinking and because I'm having a good time. I know when to stop and I know what I can handle.

However, when I was telling Kirsty why I was holding onto the desk at work feeling like death and she said, "You scare me", with a laugh, I knew I hadn't made a measurement mistake. The reason I was holding on for dear life was because I was trying not to scream or cry in pain. My whole body felt like it was on fire and simultaneously eating itself inside. It was in that moment I realised that I could not keep this up, this lifestyle of thirty-eight on and twelve off; this new condition needed me to actually let it rest. Your body does all of its main healing whilst you're asleep and so far I had been keeping myself awake with caffeine and will power until I passed out into its second decade and I needed to get ahead of the curve on this one. It occurred to me very quickly that I had long since stopped actually trying to sleep because for a long time I was just spending nights staring at the ceiling and tossing and turning like a rotisserie chicken, cooking my brain from lack of sleep. This probably wasn't helping my mental health but that's a whole different kettle of fish and let's not go there again. 

So, I resolved to go to bed, didn't matter how long it took, I was going to lie there and do my time. I figured it would take weeks but eventually my body would relearn that when we lay down it was time to sleep. I went to bed that night, lay down, pulled the covers up, put my phone on the floor beside the bed... and woke up twelve hours later.

Bear in mind I was pumped full of caffeine it was impressive. I would drink two to six litres of whatever fizzy juice was my focus this time - at this time it was Dr Pepper, because I have taste. It was Irn-Bru before they ruined it. It became a bit of a Catch-22 as I drank caffeine to keep myself awake because I hadn't slept because I was so full of caffeine that I couldn't sleep. I decided to make it easier on myself and stop drinking caffeine which I quickly amended to one can/bottle of Dr Pepper a day, something I'm still doing now. I don't like coffee or tea, okay? Let me have this.

So when I started to get more and more instances of feeling light-headed I noticed it but wasn't really worried. I was used to those symptoms and more before my surgery but they had almost disappeared since the successful one. The fact this specific one was started to show up regularly was something to note but not a reason to freak out. One day I came across something on instagram I had to jump to google to check.

Lightheadness is a symptom of EDS.

So started a journey of learning which of my symptoms were my heart and which were my other condition.

I do wonder how hard I would find having a condition if it were my first. I wonder what it would be like to get to thirty and have something start to happen to your body so you go to the doctor to just check in with it. How would you react to being referred to a specialist, a rheumatologist, who then immediately tells you that there is a name for it and it's with you for life? How would you react to a physio telling you it was in your head? How would you react to discovering that things you've had your entire life - smooth skin, unstable joints etc - were common with this condition? How would you reconcile being disabled when you remember when you weren't? I remember not having this problem at the back of my throat and I really am not dealing with it very well. But it pales in comparison to everything else. And yes, I'm in pain a lot and some days I don't even want to be conscious but it also pales in comparison to a heart condition that could, and probably will be, the reason I die, unless I get there first.

Sometimes I feel like Kel at the beginning of Kenan and Kel; Kenan would say something obscure and then walk off, leaving Kel to worry about where this was going and then go along anyway, knowing he was probably the reason it was going to go to shit.

Sometimes it feels like another camera is rolling? Must be another illness.

Which is probably when I came to the realisation that I may as well enjoy life a little.

Sounds crazy, doesn't it? It took me this long to realise. But if you think of everything you've read so far is it really such a wonder that it took me this long? I guess it would be normal to think of this when you survive a surgery that's meant to kill you or even to have been thinking this all along, knowing that dying young was a strong possibility. Depression is a stunting bitch.

Whatever the reason, it started in silly ways. In 2018 I got on a plane and went to Italy with my mum and found out that flying was amazing! I wouldn't get in a charter plane or anything but looking out that window at the Colosseum and wondering if the people who built it and lived with it ever looked up and thought about what it would look like from up there, would the world ever see the Earth that way or was that reserved for their gods, was a feeling I never thought I'd experience. I had never liked heights and was glad to be able to say, "Oh, no, I'm not allowed, medically," whenever there was a roller-coaster nearby and still do, you psychopaths. And now that I cannot sit for as long as I used to, getting to Carmen's is a lot easier. From then it grew slowly and gradually until I met a friend of a friend one night and was told she was a qualified piercer. I mentioned I had always wanted my lip pierced but no one wants to touch me. My cardiologist said it was fine now but they would not provide me with a letter to present (as was needed years ago) so my only option was not to disclose and I wasn't going to do that.

She said she had no problem doing it for me.

So, the next time I was on antibiotics I went along to her shop and got my lip and ear pierced and I have never looked back. My body tried to reject the lip piercing and it did involve a lot of palava I'm sure the piercer regretted but in the end I have my lip, ear and nose pierced.

Oh, you know, and a tattoo.

Because I decided that if I was gonna be here and be trying to manage my life for the least amount of pain - and not always winning - then I was damn well gonna find my little chunks of happy. Regardless of when the world tried to take them away.

Cue back to the DWP emerging from the shadows.

In February 2023, they doubled down on me. I'd had an appointment to attend a reassessment for PIP after which they informed me that, despite adding another condition that affected my mobility to my collection, I would no longer be receiving PIP. Again, despite having another mobility-altering condition than I did when I was awarded it the last time. Which, if you remember, was when I was in the hospital having surgery that was supposed to kill me.

So began another fight I would be having, all concurrent to everything else.

In terms of the supposed over-payment, multiple times I found myself breaking down because it would not leave my brain, I was going around and around the story in my head, out loud, day and night. I told it to family and friends and those helping me with the case over and over, I found myself telling it out loud to myself whenever I was doing anything - making food, watching TV, tidying up, trying to sleep, trying to relax or enjoy anything. Now, they were adding PIP to my brain, all while I worked a job I hated.

I always avoided main charity shops, it was the reason - as I said - I started off in Oxfam's bookshop, instead of the British Heart Foundation - I did not want to work with clothing because of my phobia. But here I was in 2023 doing that exact job. I spent every single shift nervous and waiting for my phobia to jump out at me, as well as being absolutely exhausted because it was too much for me.

I would go home, sometimes barely making it home before tears would start, and then the spasms would hit and I would spend the next hour going in and out, in waves, of excruciating pain. Muscles would tighten more than they should, my body would writhe and twist until I would eventually be released and need to go to sleep almost right away but, more than that, the next few days I would exist in a haze of exhaustion and recovery. Usually, when I was nearly recovered it was too late, I had another shift, all while I was trying to implement my pacing techniques.

The DWP didn't just accuse me of being over-payed and take my PIP award from me... They took my bus pass too.

I was terrified to spend any money (on anything but bus fares) because Tracy - someone at the Welfare Advice Service (Patricija went on maternity leave) - had started to help me prepare to appeal the over-payment decision and had explained that this wouldn't be simple as there was more at stake than we thought.

So, the DWP were arguing that, in October, since they decided I overworked or over-earned, I was not entitled to the money they gave me that month, which was coming to nearly £1500, because of rent too. However, Tracy explained that there are certain regulations that mean they could argue that I owed them every subsequent month too, by this point it had been seven months since October - £7500 and counting for every month it took them to make their decision. Their decision, after our mandatory reconsideration, went a little something like, "Oh you're right, we made a mistake, that's our fault, let's fix this. We should have included more weeks in our calculations and now you owe us more than we thought. Thanks for pointing it out."

Well, shit.

Just when you think you have them on the ropes they knee you in between your legs.

It also set out their calculations, which are fucking stupidly done, by the way; they decide that they work out an average of what you make in a set period and then use that to figure out what you made a week. Instead of, you know, looking at what I made on the payslips they requested. My anger was also at the whole equation - no one mentions any of this when they send you all the information about what you're agreeing to by signing up for permitted work. How can you take something into consideration if you're completely unaware of it? Additionally, how can anyone agree not to exceed a figure worked out by averages that you can't foresee?

At this time I was physically exhausted from work and the after shocks of spasms and pain, then emotionally strung out from being anxious and having to hold conversations with strangers all day.

I know that I said I've only felt like I have somewhat of a handhold on my depression recently, but it does still affect me in ways perhaps you wouldn't (or totally would) think of. I'm not much of an extrovert and I am soooooo bad at small talk. When you first meet someone and you have to think of things to ask and say and be interested in. I hateeeeeeee that. I like the part when you've met someone enough times that you can confidently ask a follow up to something you have already discovered; hey how was the birthday party? hey, is your mum any better? oh, how's the new job? how was your week away, do anything nice?

Being poly and especially going to the group meeting every other month I have got a little bit more used to having to stumble over that first stage, but it is still so exhausting. At this point, I spent (only, I'll grant you) two days a week pushing myself way past my physical limits and the rest of the week trying to recover, emotionally running myself ragged, unable to concentrate on anything but the DWP and, sometimes, trying not to pass out from period pain because I had already been told by my area manager that I had had too many absences.

To clarify, I had had three absences in six months - all of which were only one day but that, apparently, didn't matter. I was not managing to be at work and to be in the state my periods get me into - even causing me to be sent home early at one point because I was nearly going lights out and acting as if no one had been home to see the lights going on in the first place.

Remember, the entire time this is happening I kept getting lovely visits from the police.

Why?

Because I found out that the flat underneath mine is private-let but is used as emergency housing for anyone evicted and in need of somewhere to stay. I found this out when I got in touch with my housing association to talk to someone about the asshole living there. Throughout all what I have told you has happened, DJ Vibrate downstairs has kept up his daily torment of Heart Radio and making sure my day is neither peaceful nor headache free. My housing association informed me that, despite having a similar name, our associations were actually different (they weren't, they were just a different side of the same association, fucking stupid) and I needed to talk to them about it. So, eventually I got an email address for them which started a very frustrating journey on the road to "fucking nowhere", population me and my downstairs neighbour. After emailing a guy (Gary, clearly one of Rebecca's TV crew), and I won't go through every email (even though I want to name and shame) he basically told me that he had spoken to the neighbour and he had no idea about the noise and would keep it down.

He did have every idea about the noise because the radio was so loud there is no way anyone could be in the same room and think, hell I could barely think. Also, I had gone to the man's door after 11pm the night before I emailed Gazza, and knocked. I had to do this twice because his radio was so loud he couldn't hear me (by the way, when I say radio and not music the reason is because the adverts and news were just as loud) and then he shut the music off and said, "Is someone there?" to which I said "Yes, hello?" He replied, "What is it?". All of this through an unopened door and he never seemed to have been walking to the door, which struck me as odd (did he just stand behind the door listening to his radio?) but I thought okay fair. So I said, "Could you turn your radio down please, it's making me ill". He paused and said, "What?" So I repeated, "Could you turn your radio down please?" He, again, paused, and said, "I just did?" I sorta scoffed and said, "Yes, so you could answer the door?" and he said, "So I have?"

I realised he was just going to be a cunt so I said, "Okay, I'll just phone the police in future then. Bye." and walked away up the stairs. He was talking through the door but I have no idea what he said. The loud radio continued into the next few days, I don't know how close it was that Gary answered me but I do know it was about 4pm because there was no radio the rest of that day. And then at 11am the next day it started again, so I sent Gary a video of it and informed him that he was very aware of the volume as I'd already spoken to him, outlined the encounter, and that this is what he thought of "keeping it down in future".

From there I got nowhere with Gary, even though he said he'd come out and do a check - something I had to remind him of because he conveniently forgot - I was also in my flat the day he came out to talk to everyone and heard the card drop onto my hall floor, without so much as a knock at any of the doors. You can hear anyone knock in these flats because of the echo of the stairwell, and the noise of doors opening. He didn't do shit. So I started calling the police, which I was advised to do by the lovely Gazza. They, of course, were busy with more important things so by the time they came out, usually, his music wasn't on and whether he was in or not he never answered the door. One day, they came, and he did answer the door. They then came up to tell me that he had no idea about the volume and would definitely like to talk to me in future. You can imagine how well I took this.

And you can imagine my face when, after the police left, the twat knocked my door.

"Did you phone the police?"

Me: "Yes, I did.

"There was no need for that, you could have come and spoken to me."

Me: "I did."

"No..."

Me: "Yes, I did."

"I've never seen you."

Me: "Yes, you have. I came to your door at eleven the other night and you gave me cheek so I emailed the housing who said they spoke to you and advised me to phone the police."

Him: "... Well, I must have been drunk."

And there is the problem, my friends, because at that point he had seen me on two different occasions, one of which was when Carmen was visiting and he had to turn himself against the wall to let us both past. Just to add to his bullshit, I have teal hair and Carmen has purple hair. How you forget that, only me and Jack Daniels could tell you.  

Eventually Gazza stopped responding to any email from me and the whole palava stated again, only this time I was screaming into the wind.

This whole thing resolved itself when the police gave me a number for an agency that deals with neighbour disputes. They suggested going to mediation but I flat out refused. My sister and her partner tried all of that when they lived in Southside - before we all buggered off as quickly as we could - and their neighbour was, to say the least, a complete arsehole. It got them nowhere and neither did Edinburgh council. The only other thing, I was advised, I could try was to complain to the association again, because there is a layer of investigation you can apply to the council for; they will investigate how the association tries to resolve anti-social behaviour by their tenants. So, I did as advised, I emailed one more time, to the generic email I had emailed to previously, and got Gazza. Only, this time, I got someone else.

This woman emailed and called me but I cannot, for the life of me, find her emails. Essentially, she told me that the tenant was being evicted, for a reason that could not be disclosed, and that the problem would not be happening anymore. After some back and forth she told me that my email was the first she had heard of the issue. I was shocked because that made no sense. She told me that the area was usually under her control but she had been on maternity leave so they'd got a temp to cover. Gazza. And then it all made sense. I had emailed a generic email that is then answered by the person it concerns, whose email is their own name. So any email Gazza had answered was marked as being dealt with and the person he replaced could not access his account when she came back. He just disappeared and did not pass on anything before he faded in a cloud of incompetence. I would have forwarded all of my emails to the person I had replaced, but that's just me, clearly.

That's why he'd stopped replying, he'd gone and she had no idea I was having this issue. So, essentially, she heard of it and two weeks later she called me and it was dealt with already. See what happens when you get someone competent in the right role?

I know what you're thinking at this point; how much more can you tell us?

You poor sweet summer child, this isn't even the half of what I went through in that period.

I had a minor procedure on my foot after ten months of pain. And walking on that pain. And working on that pain.

But, back to when competence meets incompetence.

Being mindful of the DWP's regulations Tracy and I made choices about which decision to appeal. There were three different decisions made my the DWP - entitlement, recoverability and civil penalty. Appealing the entitlement (whether not I was entitled to the payment I received in October) would give the DWP the power to argue that they should be able to recover all the money I received from October. So from October 2022 to September 2023, so twelve months of £1500, which is £18,000. To explain how bad this is further, they include a list of how much your wage would be garnished depending on how much you make. Suddenly owing money is not going to cure my body and make me able to work more than I already am, in fact my body was more likely to get worse and lead me to working and earning less. So, according to their payment timetable, to pay that off, would take me fifty years.

You read that right. I was staring down a lifelong debt for the sake of (according to them and completely not right) being overpaid by just under eleven pounds. You also read that right.

We decided not to challenge that at all, because then all we were arguing over was £1500 and a £50 civil penalty.

We would appeal the recoverability part of the decision, which would argue that they did not have the basis to garnish my wages and take what they decided (and we weren't going to argue) that I owed them. To reiterate: I did not owe them this money, I did not overwork or over-earn. I earned £9.98 an hour and started off at 15 hours, which then moved to 14 in the December. You were allowed to earn, (if I remember correctly as it has changed with inflation) £152 a week, after tax. 15 x £9.98, then 14 x £9.98, before tax, is not going to make £152 in any known universe. The only reason we were not contesting this was because, by appealing it, it gave them the right to argue for the £18,000. If I had to pay them anything, I would rather swallow my pride and hand them £1,500 to be done with it than have a lifelong debt hanging over me all over less money than I had in change in my purse (£11).

Working at Barnardo's was never about earning money, not for me. It was about becoming a part of society, it became about possibly moving into longer employment and leaving benefits completely. Now it was about being treated like a criminal when it should be illegal to write government policies and be this stupid. 

We would also appeal the civil penalty on the grounds that I have never had a job before, I was unaware than when I started would have affected when I got paid or my agreement with the DWP, as evidenced by the fact that I called them at every other opportunity when I had information. During all of this, the rates of permitted weekly pay rose with inflation, as did my pay, and I called then on April 1st, as soon as I got the new hourly rate confirmed, and told them of it, despite it still being under the threshold. 

Tracy would call me occasionally, flawlessly switching between our ESA fight and the ongoing PIP appeal too, doing her best not to confuse or overwhelm me as well as listening to my, "it's not fair", rants change into questions she didn't know the answers to but would find out. This case was so complicated she went to her boss for help who had no idea and had to use another advice service to figure out what to do. How anyone without this kind of help is supposed to navigate this, I have no idea.

At the end of one of our calls about the ESA fight she said, offhand, "Of course, the best case scenario is that someone will be tasked to look at this appeal from the DWP's standpoint before the appeal, see that it's bloody ridiculous and overturn the decision, you won't owe anything and we can forget it."

There was a pause and we both started laughing. Shared mania, probably. That would never happen but god, that would be beautiful, wouldn't it. Anyway, I'll do what you asked and I'll email you later. Thanks. Thanks. Bye. Bye.

In the meantime, I got back to more pressing concerns and spent my usual time in front of the mirror inspecting every inch of my face. Acne is a bastard and it's one that won't let me go, even now. One morning I went into the bathroom to wash my face in the middle of the day. I did this quite a lot as sometimes (especially when due my periods) my face would get so oily I'd feel itchy. I knew about combination skin but I had never really been able to find the balance between getting the oil off and drying out the rest of my skin.

One day, I let myself go down a rabbit hole of "oil is my problem, what can I eat or avoid eating to reduce oil". If it tells me to stop drinking Dr Pepper I'm going to scream, I already gave up pasta ffs. You think that's a joke but there is gluten in fizzy juice, something I found out by accident and not a happy one. But at the end of it I was looking at 'oil reducing' face products. The next time I was downtown I remembered about them and decided to see if I could pick up something, it probably won't work but hey ho, this has always and always will be my life, huh?

I started using an oil control face wash and noticed a gradual but very obvious difference. I changed to a few different ones but one day I ran out and went back to an old face wash, within days my face was breaking out all over again and it felt dirty as hell. So back to oil-control I went and I've stayed since. Whenever I've been glutened my face is so thick with oil I can wipe it off and my hand is covered in it, depending on how much gluten I've had. Bread is the baddest bitch in that fight. 

So now people were, and still are, commenting on my face and my weight. It started off feeling kind of good and now I hate it because it not only reminds me what I was like before, it also reminds me that at any moment my luck is going to run out and the goal posts will be moved.

Which has already started to happen. Cue me, in the street, bent over double and wretching against a small wall whilst I clutch my abdomen as it convulses. I started to panic, I lived a few minutes away but how was I going to get there. Whilst everyone looked at me and judged me (I live in a snooty area) no one actually asked if I was okay or offered me any help. I managed to drag myself home and threw myself down on the couch crying. I swear, I'm not usually a crier but the past few years have been very trying and, you know what, it's okay to cry every so often, something I never thought before. Crying was weakness and I'll be damned if I did that. Crying was reserved for when depression hit at three in the morning and I didn't want to live. Not for when it was just a wee bit hard, kay? *condescending tone and face*

I knew what the problem was I just didn't understand why it was changing on me now. Why now? Why was it piling on when I already had so much going on?

When I was 15 years old I started having this weird feeling whenever I was due my periods; to this day I struggle to describe it so bear with me. It's deja vu but for some reason it makes me nauseous and usually accompanied by the immediate  and urgent need to urinate. That feeling lasts as long as the deja vu lasts, which was usually just thirty second or less. When we went to the doctor he had no idea what it was but assured it was related to my periods and I just needed to get on with it.

I had never been brushed off like that before so I was reassured and I did just get on with it. Over the years the duration of the attacks got shorter but they got more and more frequent, sometimes they happened when I wasn't hormonal and when my endometriosis started they got more intense.

In Summer 2023 they started making me retch, feel faint, the need to urinate had long gone, but whilst they were last for barely five seconds, their frequency was going up... and up... and up.

I can have periods of time - whole days - where it happens for two of three seconds, stops for one second, then happens again. And I'm not being overdramatic, it really does happen that often. Where it used to happen from looking around me at specific things, now everything triggers it, including sounds. I can be somewhere I have never been and my brain tells me I've seen it before, where have you seen that before, oh here it is. And it'll show me, in my mind's eye, exactly what I'm looking at. It's a sort of dread that I feel, like what I'm looking at is a bad memory or omen or something to avoid. This may sound like anxiety and I have thought about it before, but I cannot describe the feeling that goes through me. I just know that it feels like, even now, deja vu.

After that episode in the street I went to the doctor's and asked to be referred to neurology - I've had this since I was fifteen and it'd been pretty consistent so there must be a reason that it was suddenly kicking up when I was in my thirties. My doctor seemed unconvinced, what did I think it could be? I wasn't sure why this was now my job, that is literally why I wanted to see someone who could tell me what it was. But, okay, I'll play your game, hon. I have a mass on my thyroid (benign) that could maybe be messing with my hormones; my half-sister died from a brain tumour that was diagnosed too late; I've had a stroke in my right frontal lobe and my family have always been convinced that the sensations I've had are symptoms of right frontal lobe epilepsy...

She stopped me there and put in a referral to neurology. She wasn't as forth coming when I recently asked for a jury duty excusal. On the phone she informed me, with a very patronising voice, that they don't give jury excusals. I told her that she'd given me one before?

I don't know why doctors do that. When DLA was moving to PIP I had to apply for ESA so that I had something to live on whilst we went through appeal (does it surprise you that they took it off of me whilst I was in the hospital having open heard surgery)n and whilst they assess your claim they ask you to go to your doctor and get a three month sick note, hand it into the job centre (which is why I was so familiar with those besties of mine) and by the end of the three months they'll have made a decision. That didn't happen in my case. They asses two things - one, if you're eligible for ESA and two, if you're eligible for an extra disability component. So whilst I was assessed as eligible for ESA they had not made a decision on the second part yet so I had to get another sick note... and another and another and another. Honestly, I don't even remember how many but it got to the point that the doctor was getting annoyed with me; they had no right to be as they were moving to locums at that point so I never saw the same person twice. I remember going in once and giving my well practised speech to the doctor, thinking nothing of it. She gave me a nod, seemed annoyed, and said, "Well, I could give you a note for a few weeks but we don't do sick notes for that long, I'm afraid."

I paused and said, "I've had them before?"

She gave me a patronising smirk and said, "Well, not from here."

I nodded and said, "Where else would I get them from?"

She sighed and turned her chair around to look at the computer. "We can see everything on here," which she said as if she was warning me in some way. As if she was telling me she was going to catch me out on a lie and to prepare my excuses.

As she was looking I thought perhaps I hadn't explained well enough, so I started explaining that it was the DWP that asked for it, that they usually only needed one, but I don't know why they hadn't made their decision yet.

She eventually found the notes and very begrudgingly gave me another one. I never got an apology from that bitch. Must be Rebecca's best friend.

Her and the doctor I first spoke to about my pain need to remember that, whilst some people are out to get what they can, some of us are actually disabled and some of us are in pain.

All of this time I am still not using any pain killers for my condition because the rheumatologist told me to take preventative paracetamol - meaning two every four hours, four times a day, every day I know I will be doing anything and the days before and after. I tried that for two weeks and all it did was make me ill, given that I was also taking meds for my stomach so that I could take aspirin every day without developing an ulcer, that is not an easy feat. I gave up taking paracetamol and started using CBD balm on my hands and any areas that were really making it hard to exist. It has been transformative. I am still in pain daily but I have something to fall back on when I cannot take it anymore.

Honestly, why aren't we funding this?

So when I got my jury duty letter I realised there was no way I could guarantee that I could turn up to court for the, on average, ten days they expected it would take. Additionally, what if something got stuck and the case took four weeks, three months? That's what was going through my head when I asked my GP for an excusal and she told me that they didn't do it. I informed her she gave me one a few months ago. I had asked for that one because I was worried it would mess up my pacing, even if I wasn't sure which way it would go - under or over doing it. She said she would look on the system, because they could see it all, did I know that?

Seriously, is there some kind of 'being a dick' guidebook they give to GPs or something?

She couldn't find it but she assured me (with a sigh) if she could find it then she would give me one. Oh and (harassed), what was my reason again. I explained it to her again and we hung up. She was probably lamenting the youth and I was lamenting that she couldn't get that stick removed from her arse on the NHS. Such a shame people are made to endure like that.

Anyway, when I went to get my jury excusal I was surprised to find that it was a lifetime excusal, maybe that's why she was so annoyed. She's right though, if I couldn't guarantee them ten days now how could I do it when my condition got worse. There is a very good chance that I will end up using crutches or a wheelchair everyday. My sister argues, "just because it happens to them doesn't mean it will happen to you", and she is right about that. I'm doing all I can to make sure that doesn't happen (as much as that is in my control) but there is nothing wrong with needing mobility aids, I have some friends that do. But, I need to mentally prepare myself for that possibility so that, if it does happen, I'm ready for it and it doesn't blind side me.

Which it did a few months ago when I started waking up in the morning unable to use my hands from the elbows down. I was weirded out by it but I just put it down to the way I'd slept and circulation. I had had to get a body pillow to sleep as my sciatic pain had gotten worse and my new-found like of sleeping had started to be attacked my RLS and muscle spasms. One of the things that cause pain at night and in the morning with EDS is blood settling - I wonder how bad it would be if I didn't take aspirin every day - so settling in to sleep can trigger these reactions and moving in the morning means moving the blood that has settled and that is very painful. That is what I thought was causing my trouble in the morning but eventually I thought there has to be something I can do. Online I could only find that this was a common symptom of EDS (collective yay, we found another one) but no real way to help with it so i called physio and asked for a closer appointment.

Which is when I was told that I was discharged and would require a re-referral.

Sorry, what?

The last time I had seen physio Andy was after I had started working at Meadowbank and he had told me he was send me an appointment for about nine months away. That was fine by me. Now, apparently, I had been discharged. I told the person on the phone what he'd told me and she informed me that there was nothing she could do, I'd need a re-referral. So, I shook my head, thanked her and got onto my GP. There I hit a snag and no it wasn't anyone being a dick. It was a technicality. My GP had not been the one who had referred me to physio, it was rheumatology and I had been discharged from there so to get a re-referral I would have to be re-referred to rheumatology then they could re-refer me, or I could have a new referral through the GP. I didn't relish going back to rheumatology, especially since they couldn't do anything for me beside refer me to physio, so I elected for a referral through my GP.

In the meantime I saw yet another useless physio.

How?

Well, when I got the letter of the overpayment from ESA I had a little meltdown when they sent me the letter saying that I owed them more than they thought and I decided I'd had enough. I had heard of a charity who help disabled people find work; they either help people who have been in work and then disabled return to work or help disabled people find work that they can keep in the long term. I contacted them, I needed a job I could do full-time so I could get off of benefits and never have to deal with this crap ever again. I had been working with them since, whilst I was at Barnardo's not only were they trying to help me find a different job I didn't hate and one that actually cared, they were also helping me deal with Barnardo's shit.

I had worked at Barnardo's from September 2022 to May 2024 and not once did they do a disability review. I had a review of "whether this jobis for you" threatened when I was off three non-consecutive days for my endometriosis but the area manager never actually carried it out. I told her it was a good idea, let's do it, because no one is taking my disabilities into consideration but she chickened out. At one point a manager of another store who used to be a store associate at ours went to the area manager about me because she watched me nearly pass out in front of her (I had no warning it was going to happen, I just suddenly felt faint even thought I didn't actually pass out, thanks hEDS) and she thought the area manager should do a review. She asked the manager to do it. The manager called one day to ask how the shop was doing and I said fine. That was apparently her doing a review.

Through this charity I received a disability bus pass and access to an NHS physio whilst I was waiting to see someone else in the main NHS. I almost asked for my referral to be taken away as I felt that there was no point in me taking up a referral space if I had access to the service elsewhere. I am so glad I didn't. I won't bore you with the details but, after being told by this woman that she had treated people with EDS before, she proceeded to tell me that my problem was... the way I was sleeping.

I told her that I had a body pillow, sometimes sleep on my couch without it and have tried multiple positions, including using pillows to prop it up because of my rhinitis. Nope, it was how I was sleeping. So, I pointed out that a ten second google tells me that it's a common symptom of EDS. Nope, the way I was sleeping. She did various pointless measurements and started talking about the way I stand. I did the exercises she gave me but I honestly started disassociating whenever I was there because she was clearly of the Rebecca-type and wouldn't help me. I tried everything she suggested, in terms of how I was sleeping, and - surprise, surprise - nothing changed. Not until I saw Rosie at the Western General. I was surprised to find out that she was a hand specialist. Since when did the NHS listen and give you the exact help you need? She did some strength and flexibility measurements while she assured me that this was a common symptom of EDS.

I might love you, Rosie.

She then gave me two simple exercises to do, isotoper compression gloves to sleep with and suggested some therapy putty which I used when I was a child and made another appointment for me in a month.

In the space of a few days the time it took me to be able to use my hands and arms in the morning - therefore get up, brush my teeth, go to the toilet (or at least get off of it), get out of the house if there was a fire, put my murphy bed away and walk around my own flat - went from nearly two hours to twenty minutes. Now, twenty minutes is a bad morning.

I saw her one more time where even she was amazed as to the progress and then asked if I was okay with being discharged. I am, Rosie, you angel.

See... competence.

At this point I'm still going through the neurology thing. I have had an initial test, something I was sad at not having a picture of. I had to go and had cables essentially glued to my head to try and see the effects of my deja vu. But in true of-fucking-course style, I had deja vu all morning, all afternoon and all night... but not during the scan. So, now I am waiting to have a three day long test where I go home with this stuff on me and film myself all day, despite there being no outward signs of what is happening.

Well. Nothing involuntary anyway. For some reason, closing my eyes can stop the feeling, which I seem to have accompanied by a shake of the head. I have noticed that it does also work without closing my eyes. Over the years I have gotten so used to saying, "stop" to myself when not out in public that now I'm not unconvinced that it's not acting like a release word for my brain. 

However, a new thing that I'm not sure about, unconnected to the deja vu, if I have started randomly shuddering out of nowhere or tensing suddenly, almost like a myoclonic jerk. Sometimes it's just a twitch and sometimes my whole upperbody jumps forward. Sometimes my arms jump up - can be a little or can be a lot. It happens mostly when I'm tired. No one seems that worried about it. I'm not either but it is weird. And new. And the reason I have almost spilled a few drinks. 

When it started, I thought it was an EDS thing and maybe it is. I also wondered if it was stress and maybe it is. But did you have to threaten the Dr Pepper or Jack and Coke, huh?

Anyone up for the last stretch?

Awesome.

In November 2023 I got a text that initially I did not understand at all.

It read:

DWP has told us they changed their decision about your entitlement to ESA in your favour. We've therefore closed this appeal.

I genuinely stared at it for ages and the sentence made no sense to me. Well, it made perfect sense but I assumed my brain was such mush that I was misreading it. I sent a screenshot of it in an email to Tracy and said so. She suggested that I should call them but it sounded like we had the best case scenario that we had hoped for but never dreamed of.

That couldn't be.

Could it?

It took about six months to get the civil penalty removed from the system but yes, it could. Someone had looked at the papers to prepare it for appeal and decided they would never win it, reversed all of the decisions and closed it. Just like that.

To say I was glad could not be further from the truth. I could think again. I could sleep again. I could spend money again. But mostly it was the vindication that I was right, I hadn't done anything wrong and I wasn't going to be branded as someone who had tried to defraud the DWP. I wasn't going to have to give them £1500 or £18,000 or even £50. And not because it was deemed unrecoverable. I was not in the wrong, just like the text said.

The text.

They did this to me for nearly a year and they tell me they were wrong in a text?!

The bastards.

I wanted an apology, I wanted playing music at my window and flowers, dammit.

I had to settle for decision letters confirming their reversal and, eventually, a removal of my civil penalty because how can I be penalised for not telling them of a change that they have now ruled didn't happen. Spoilers, they can't.

Now Tracy could go back to helping normal cases and I could relax right? HAHAHAHAHAHA.

We still had the PIP fight, remember?

But I genuinely described it as feeling like I had dodged a bullet. I had dodged a possible fifty year debt because one of the things I was so in denial of that I didn't even want to think about, never mind talk about, was that the DWP could trigger their regulation on their own, to get the £18,000. They'd have a lot more hoops to jump through if I didn't appeal the eligibility but it was possible. That was still following me in the background, deep-breathing and ominous, like the butler in the old Tomb Raider game. 

That bastard was so fucking creepy.

Hands up if you ever locked him in the freezer?

After that the DWP weren't done with trying to punish me for having a job. Unfortunately this wasn't my first appeal with them but it was the first where I had to talk about this new condition. I wasn't sure what to say, it is hard to concisely sum up any disability, I only manage it with my heart condition because I've been doing it for thirty years. When I tell people about it I laugh when they comment how hard it is to explain because, lord, is that the short version. 

What happens is that you are sat in front of someone who runs the appeal and three other people with specialities - in my case it was a GP, a disability advocate and another person who, I have to admit, I don't remember. Also present - this time via a video call - was a DWP representative. There was me, my mum and my representative, Tracy, on my side of the table. My mum is there for moral support and is asked not to speak for me, or at all until the end, in summing up she is given a chance to speak if she wants to. In this appeal I was asked about how I got into my job, how I function on a day-to-day basis, what different care I am receiving. Mostly they are focusing on the parts of the original decision we asked to change, unless we have disagreed with the whole report (or not specified in our appeal) in which case they will review the whole case. Tracy advised me that if I give an answer also give an example. So I could easily say this affects my mobility but if I don't say how they won't ask and it won't be backed up with evidence or testimony. That's how they get you. So I was focusing on that.

So much so that I forgot to talk about the pain EDS causes me. You know, the biggest thing going.

At the end my mum was asked if she had anything she wanted to bring to their attention and she said that I had not mentioned the pain. I said, well they'll know.

They confirmed that they did not as I have not spoken it. I thought about what Tracy said, just saying it caused pain did not mean that they could take that as testimony. It was a blanket statement, nothing else. So I started talking about it and I could see a relief in their eyes (not something I imagined as my mum and Tracy saw it too) that they could now ask me questions about my pain as it was now in the testimony. 

I don't watch the celebrity crap on TV. I hope they lead happy lives but I have my own shit going on. So anything that I know comes from doom-scrolling and I have learned against my will. So I never watched the Depp-Heard trial except in bits and bobs as I skipped the videos whilst scrolling. What I did remember when I was going through this appeal was some incident (I don't remember what it was or why Depp's lawyers were not allowed to reference it) that Heard brought up herself and Depp's lawyers thought their numbers had come up because now they could enter it into the record. 

That was the same idea as what happened to me; the appeal judges could not ask me leading questions, they could only ask about it if I spoke about it. It was only mentioned in a blanket statement in the papers they had and, for whatever reason, they could not ask me to elaborate on it unless I brought it up in more detail during a question or statement. Now that I had the questions flowed from everyone on the other side of the table. If my mum hadn't brought it up Tracy did say she would have tried to prompt but we all agree that we don't think I was winning that appeal until that moment. Not because I'm not disabled but because there was not enough buzzwords for the criteria to be met.

I do remember that the DWP were asked if they had anything to add at the summing up. The man in the screen looked bored as hell but he said, in an equally bored voice, that he just thinks they should remember that I live two flights up and maintain a job.

Tracy was then asked for her last word and her and Rosie must have been from the same stock. She said she just wanted to remind the panel that PIP was not a means-tested benefit and that therefore you could be considered disabled and still have a job. In this case a part time job. And Taylor's current housing situation was not relevant either. She added that she hoped the panel would stick to the eligibility criteria even if the DWP won't.

Have you ever tried not to burst out laughing or widen your eyes because you could never be that assertive? I genuinely thought, "oh fuck" in my head. I wanted to put my hand out to her and start apologising for her. But no, she was right, whether you have a job or a flat is not within the criteria. Exemptions would be if I was a rock climbing instructor or something along the lines that directly contradict my case, which is a broad definition that the DWP try to use in the way he did to wriggle out.

And they almost got away with it too, if it hadn't been for this pesky lawyer.

Still no bus pass though.

I'm not sure I understand how the addition of a chronic pain condition that affects mobility for the rest of your life means that you do not qualify for the mobility part of PIP but after the past year of crap I was in no mind to appeal the appeal. Which you can, by the way, it goes to a higher court. I felt like I had used up my luck for the time being.

I had got my dream job (then lost it, I'll grant you), swerved a bullet or a steam train full of bullets on my ESA and now won my appeal on my PIP. I was ready to take the money, Chris.

I remember that the appeal finished and we spoke briefly to Tracy who told us that it might be a few days and that I did really well giving the examples and well done Mum for bringing up the pain and letting that come out too. We all shook hands and we left, Tracy got in her car to go back to her job and we got in my mum's car. We spoke about it all for what seemed like hours. It's a different kind of decompression chat because it's not over yet, and while you do discuss a little of what you could have done differently, you know there's nothing to be done about changing it now so you just wait and see.

To both of our surprises Tracy called me about an hour later to inform me that they had just sent her the decision and not only did we win, I was awarded a higher award for a longer period of time than usual. I wanted to cry. Not because I won or because of a higher award.

It was over.

ESA had accused me of an overpayment  on the 12th of December 2022 and my PIP appeal was finished on the 8th of January 2024. With everything else you've just read and everything else I haven't told you... I don't actually blame myself for feeling like I was going insane.

A couple of friends owed me small amounts of money and that day I text them telling them I didn't want it back. It wasn't because I was suddenly rolling in money but because I felt like I had been extremely lucky and I wanted to pay it forward.

I've been extremely lucky in the past couple of years, I know that. I've stumbled into a lot of self-discoveries and self-improvements; I've met some amazing people - one of which turned up to see me one day with flowers and an apology from the DWP - and let go of things, people and places I needed to. 

When I set out to write this my only idea was to just write a small thing about all the other parts of my life that weren't cardiac troubles. I didn't think it would take me very long to write. I started this in the hope of posting it on my last birthday and it's now my second birthday. It's been 8 years today since my successful surgery and ten since the whole palava started. But you know what else? I've known Carmen for ten years, I discovered I was polyamourous six years ago, I've lived in my flat for four years, I've been learning Scottish Gaelic for three years, I've been at the Bethany shop for a year and a half, I got my first tattoo five months ago and I've been writing this for ten hours solid.

It's funny what happens if you follow your heart, huh?

I should probably eat.

Just as aside, I did go to the hospital recently for a check up and everything is fine. 

*double thumbs up*