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.
Category: anxiety, autism, chronic fatigue, chronic pain, covid-19 pandemic, exercise, heds, hydrotherapy, meltdowns Tagged: anxiety, asd, autism, autism spectrum disorder, autistic, chronic pain, core strength, covid-19, exercise, fitness, heds, hydrotherapy, hypermobile, hypermobile ehlers danlos syndrome, hypermobility, medication, meltdown, nhs, nhs waiting lists, omicron, pandemic, pandemic 2020, physiotherapy, swimming, swimming pool
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.
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.
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.
Category: anxiety, body image, chronic fatigue, chronic pain, depression, emotions, food, medication, mental health, sleep, treatment Tagged: antidepressants, anxiety, appetite, chronic fatigue, chronic pain, concentration, depressed, depression, fatigue, food, insomnia, maoi, maois, medication, medication review, nausea, side effect, side effects, sleep, sleeplessness, suicidal thoughts, tranylcypromine
Posted on August 1, 2022
Summer as an autistic person can be really difficult. There are a lot of changes and some of them can feel quite extreme, quite overwhelming: the heat, the humidity, the general increase of people out and about… It can feel like a lot to deal with. I don’t pretend to know everything – not by any means – but I thought I’d share some of my thoughts and strategies for dealing with some of the big summer stresses…
CHANGES IN ROUTINE
I know it’s been a while since my last post. A lot has happened and I’ve been having a really, really hard time. Some of that is stuff that I would like to write about at some point but I still feel like I’m stuck in the middle of it. Plus, I’ve been really struggling to write – with even being able to string a sentence together – which hasn’t been helping anything. Things still aren’t great – which may be the biggest understatement of my life – but I miss writing and I miss writing for this blog so I’m trying to push through. I wrote most of this a while ago and, given how hot it’s been recently, I wanted to get it up while it might still be helpful. I hope it is.
Category: anxiety, autism, body image, covid-19 pandemic, heds, holidays, meltdowns Tagged: anxiety, asd, autism, autism spectrum disorder, autistic, covid-19, crowds, dehydration, eds, ehlers danlos syndrome, fabric, fan, heat sensitivity, heds, hypermobile ehlers danlos syndrome, light sensitivity, noise, noise sensitivity, routine, sensory, sensory overload, sensory sensitivity, structure, summer, summer holiday, summer holidays, sunflower lanyard, sunflower lanyard scheme, sunglasses
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.