Finding HopeMass Observation Day 2023 (A Day in My Life)
Posted on May 13, 2023
So yesterday was the 12th of May, also known in the UK as Mass Observation Day! Every year, the Mass Observation Archive asks people to keep a diary for the day in order to record the everyday lives of the UK population. I’ve been keeping diaries for most of my life and I think that the idea of pulling together all of these accounts in order to get a picture of an ordinary day in the life, whatever that might look like, for a big group of people is really, really cool so I always try to participate. Here is my contribution for this year.
Some important things to know before reading: I’m neurodivergent, autistic and ADHD, and struggle with multiple mental health issues (Depression, Generalised Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Personality Disorder) and physical health problems (Hypermobile Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome). Having spent eighteen months in the worst depressive episode of my life, I’m recently back on medication and trying to get my feet under me again, working hard at both therapy and hydrotherapy. I’ve also recently released my latest single as a singersongwriter, ‘House on Fire,’ and am working towards several other projects.
I slept through two alarms, completely exhausted. I’d had a really late night in London seeing Ingrid Andress in concert (supported by Nick Wilson), which was absolutely amazing but between the energy expended and how late I got home, I was beyond tired.
When I finally managed to force myself awake around eleven, I lay in bed for a little while: I did a quick check in with social media (I’m trying really hard to find a healthy balance around time on my phone), did some Duolingo practice, and read a little bit of my book (both of these things are habits that I’m trying to practice daily). Then I got up and got ready for the rest of the day.
At one, I had a Zoom date with one of my best friends. We had a good catch up about what’s being going on for each of us, with many a tangent on kind of bizarre topics like alternate universes or the different sounds that insects make. And then we continued watching the TV series we’ve been watching together for the last few months, a series we both enjoyed when we were younger; we love it but we also love making fun of it so we always have a blast. We managed to watch two episodes and had a great time before I had to go. I didn’t have long before my therapy appointment so I got my bag ready and then fiddled around on my guitar until I had to leave (I haven’t been able to play for long stretches of time recently since I hurt a couple of my fingers so I’m trying to build it up again).
I was so tired and really sleepy (one of the ongoing symptoms of my health struggles and quite likely a side effect of my medication), plus my chronic pain was pretty bad (my shoulder and knee have been particularly painful for several days now), but I tried my best to push through and engage the best I could with therapy. In some ways, it was a fairly chilled session (as they go): my therapist had asked me to send her the poetry I’ve been working on over the last month or so, which I did. But it was also hard and I felt really vulnerable because most of the poems are so honest and so revealing. There were some that I said, before we even started, that I couldn’t talk about; just writing about those topics and sharing them (my anxiety about them was so high that I was really tempted to leave them out) was a big step forward. Obviously I want my therapist to know about these struggles but talking about them is beyond difficult (just the thought of it makes me want to scream or run or both); this is the best I can do for now. So we went through the poems, talking about what inspired them and my feelings about those people or experiences or struggles, which inevitably turned into bigger discussions. That meant that we didn’t get through all of them but we did cover some important stuff. I’ve been back at therapy for a while now – several months – but my new therapist is still getting to know me and I’m still getting comfortable with her; there are many things that I can talk about but there are still things that I can’t, things that I’ve never been able to. It’s a process, as I often have to remind myself.
Back home, I talked with my Mum about some of the stuff that had come up in the session but I’m always completely exhausted after therapy – I have been known to fall asleep on the sofa afterwards, hence the late afternoon appointments – so I checked in with the cats, put on The Good Place (my current rewatch), and lay on the sofa for a bit. I called one of my parents for a catch up, had some dinner, and then spent the rest of the evening working on some different things for this blog.
What should’ve been a fairly pleasant evening was complicated a bit by how bad my hair pulling has gotten. That restless, anxious energy that drives me to keep doing it is so hard to resist, especially when I’m tired, and the longer I do it, the more it hurts: my scalp, my neck, my shoulder, my elbow, my hand. But I can’t stop. There have been periods of time where different coping mechanisms have at least reduced the amount of hair pulling but I don’t have one that’s working right now. It’s frustrating and it’s exhausting and painful but I just can’t stop, regardless of how much I want to. I did look into Hypnotherapy briefly a long time ago but didn’t get very far with that endeavour, maybe because it always felt like there were bigger things going on, but maybe I’ll try again because it’s been ten years and it would be really nice not to do this anymore.
Given how tired I was, I tried to go to bed earlier – I’ve been going to bed far too late – and while I did go to bed a bit earlier, I still ended up staying up too late, catching up with my diary. I had multiple cats curled up with me, which was very sweet, so it could’ve been worse and, after all of my problems with sleep, I did at least go to sleep quickly and easily; I’m always grateful for that now, having struggled so much over the last couple of years.
So it wasn’t the most fascinating day of my life but it’s pretty accurate to my life right now and I guess that’s the point of the exercise. It’s a normal day in my life and this is what normal looks like right now, for the most part.
If you keep a diary or want to note down some thoughts about what your 12th of May looked like, the website is here, where you can learn more about this project (and their other work) and submit your entry if you would like to.
The First Six Months of Hydrotherapy
Posted on August 13, 2022
When I was first diagnosed with Hypermobile Ehlers-Danlos Syndrome back in October 2020, hydrotherapy was recommended both for general fitness and muscle strength (which would, in theory, help with the back and leg pain I was struggling with) and to build up my core muscles, which are a notoriously weak area for hypermobile people. I was up for that since I’ve always enjoyed being in the water but COVID made the whole process very complicated and very slow.
As far as I can tell, with the way things currently are, it seems that the way to get a referral for hydrotherapy is to be referred for physiotherapy and then a physiotherapist assesses you and refers you on to the hydrotherapy department. I’d been referred for physio three times, I think, by three different doctors between May 2020 and when I finally got an appointment in November 2021. I find myself feeling a level of righteous indignation over waiting eighteen months for a simple referral, especially when I was in pain pretty much every day, but I know it was all more complicated than that. COVID was the obvious cause for the delay but the NHS waiting lists are also incredibly long anyway. But, as soon as it all started happening, it all happened at once.
At the beginning of November 2021, I met with a physiotherapist and he referred me on to the hydrotherapy department and at the end of the month, I had an appointment with them. I will admit that, after waiting eighteen months for an appointment, I was a bit appalled that the appointment consisted of just a half hour run-through of exercises to do without a huge amount of guidance. But this is how the system works and I’ll take what I can get.
While I continued swimming in my ‘normal’ pool, I struggled to find a pool that allowed me to do all of the exercises I’d been assigned: the height of the water needed to be within a certain range, I needed to be able to walk in the water, I needed a step of a specific height and width, and so on. And finding a pool that fitted all of the requirements was difficult, and that was without all of my COVID related anxieties being factored in. We finally found a pool just as Omicron started rearing its head and I had a meltdown leaving the first session; I was massively overstimulated and my anxiety was just overwhelming. Those weren’t exactly fond memories that I was keen to revisit but it wasn’t going to work anyway as the steps didn’t allow me to do the step related exercises and there are too many of those not to have access to the right kind of steps. I was managing a modified version of the exercises in my usual pool while we searched for another hydro-friendly pool but then Omicron hit in earnest and we all retreated inside to insure Christmas could go ahead as planned.
From December 2021 to early March 2022, I was incredibly unwell because of the ADHD medication I’d been trying, too unwell to swim at all. But, in that time, my Mum had found another pool. The first session went well (although it was really hard work after so little movement for a couple of months) and the set up of the pool meant I could do all of the suggested exercises. I got a few sessions in before I left for Nashville in late March.
Back from Nashville and semi-recovered from the jet lag in late April, I got back in the pool, both to swim and to do my hydro exercises. It took a bit of work and scheduling but after a while, I managed to build in two sessions a week while I got used to the routine and started building up my strength and stamina after so little proper exercise for so long. I’ve had multiple conversations with multiple health professionals about my tendency to throw my all into stuff and how I need to take things slowly if it’s going to actually help so, even though it’s very frustrating, I am trying my best to push down that irritation and just focus on the exercises.
So, that was my first six months of hydrotherapy. There’s a few months between where this post finishes and where I am now but I thought those first six months were important to document. Since then, I had to stop using one pool and tried out another – which I love – despite difficulty actually getting out to swim because my mental health has been so bad.
Although it hasn’t been a priority (and still isn’t one really – one thing at a time), I do want to find a new all-round gym since the gym I used to go to closed down after the multiple lockdowns. I want to get fitter; I’m just having to take a longer route than I would’ve previously thought.
Trying Tranylcypromine
Posted on August 6, 2022
TW: Mentions of suicidal thoughts and negative thoughts about food.
Back in May and June of this year, I tried another MAOI antidepressant, Tranylcypromine; it actually works a bit differently to the other MAOIs I’ve tried, like Phenelzine and Moclobemide, so I was hopeful that it would be the best of those and maybe even more. This one was a tricky one to get because it’s so expensive (a month’s supply is £300 – everyone I’ve talked to about it has asked if it’s made of gold, which made me laugh because that was my exact reaction) but fortunately, I have a great psychiatrist and a great GP who made it possible. I wasn’t in a great place but I was cautiously optimistic that this one would be better.
As is always the case with posts about medication, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
WEEK 1 (10mg Once Daily)
I was still struggling to sleep, not getting to sleep until after three in the morning, and then I’d sleep into the afternoons. I struggled to get up (probably due to both physical tiredness and my bad headspace) and doing pretty much anything – my week involved a stressful dentist appointment, multiple swims and hydro sessions, a meltdown, and more – had me falling asleep on the sofa as soon as I got home. And I was tired and sleepy all day, regardless of the hour.
I was very nauseous all the time and when I actually managed food, it wasn’t satisfying at all. So eating was tough.
The depression was solid, like it was darkening the edges of my vision at all times. I was also very anxious most days and I was really struggling with my concentration.
The chronic pain that had flared up wasn’t great but it was getting better. It was less than it had been and for that I was grateful.
WEEK 2
My sleep continued to be a struggle. During the day, I was tired and sleepy (and fell asleep on the sofa several times despite how wonky my sleep schedule was) but then I just couldn’t sleep at night. My brain kept going to scary places and nothing that’s helped in the past worked. I usually fell asleep sometime between three and five am and then I’d struggle awake in the early afternoon. I couldn’t shift it, no matter how hard I tried or what I did.
I was too depressed to do anything. I was completely paralysed by it. I was depressed and anxious and restless. I was struggling to concentrate. I felt overwhelmed and lost and hopeless. I was having suicidal thoughts again. I was desperate to distract myself from my thoughts. I nearly had another meltdown. I felt like something vital in me had been broken. I still do.
WEEK 3
Sleep remained the bane of my existence. I wasn’t getting to sleep until around five in the morning and one night I didn’t sleep at all (that was a particularly miserable day). I’d manage to wake up around three or so but feel sleepy straight away. And I was tired all day everyday but then I’d go to bed and just lie there, so anxious that my chest felt tight, so anxious that I couldn’t breathe; I just couldn’t calm my brain down.
I was still very depressed. Nothing helped, nothing made me less depressed, or made me feel better. It was so bad that I just couldn’t engage with anything; I felt trapped with my thoughts and it was horrible. And feeling like that, I didn’t know what to do with myself. I just felt like crying and screaming. I was also really anxious. And I just felt hopeless, my suicidal thoughts a consistent buzz in the background. My OCD also became more difficult to manage; the compulsions felt even more suffocating than usual.
Food was also really stressing me out. I wasn’t enjoying it and it doesn’t seem to give me any energy, which – in my head – meant that I was just gaining weight and the thought of that made me very anxious. I’ve never talked to anyone about my anxieties around food and body image because it always feels like there are more pressing problems. Sometimes it’s easy to ignore and sometimes it’s all I can think about and this was the latter.
WEEK 4 (+ Zolpidem)
After so much disrupted sleep, my GP prescribed me Zolpidem to hopefully get a handle on it. As a result, my sleep cycle became very erratic: some nights I barely slept at all, some nights I slept for more than thirteen hours, some nights I slept at a normal time, some nights it made no sense at all. But regardless of that, I was still tired and drained and sleepy during the day.
I was still feeling awful. I was depressed and anxious with almost constant suicidal thoughts. I felt useless and pathetic and I couldn’t stop crying. I just completely overwhelmed and utterly hopeless. Even the most basic engagement with the world was excruciating but hiding away hurt too. I ended up retreating from everyone, both in real life and over social media. As I said, I just felt completely overwhelmed and paralysed.
After a rough session with my psychiatrist, I came off the Tranylcypromine. That was fairly easy, all things considered, and I did feel better. Well, ‘less terrible’ is probably more accurate: I was less sleepy, which made things easier, and I had periods where it all felt a little less oppressive. I also got better at blocking the world out, although I’m not sure that’s done me in favours long term.
As far as my psychiatrist is concerned, my options now are to either start taking Phenelzine again – the one antidepressant that has helped – or to look at other options. My anxiety around going back to Phenelzine is that I will just end up here again, when the side effects become too much to handle. So it feels like searching for another option is inevitable (but then I’m scared that another option won’t work and I should just accept what the Phenelzine can do but… And round and round we go). I have been referred to the Treatment Resistant Depression clinic (something I had no idea existed) to discuss what those other options are and we are also talking to a private clinic, trying to get as much information as possible. But, as hard as I try, I don’t know what to do next. I don’t know what the right choice is and no one else seems to know either.
Finding Hope 