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 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…
SENSORY ISSUES
CHANGES IN ROUTINE
ANXIETY
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
Posted on June 11, 2022
TW: Mentions of suicidal thoughts.
After a couple of months of Moclobemide, it became increasingly clear that it wasn’t really working. It was better than nothing but it wasn’t good enough; I was having less bad days than I’d been having previously but I wasn’t having many good days. I don’t expect constant happiness – I know that that’s not a realistic dream – but I have to believe it’s better than this. But, in order to try something new, I had to get off the Moclobemide first.
I was taking 300mg twice daily before I began to reduce the Moclobemide and I came off it fast. As always, this was a process I discussed with my psychiatrist and we made all of the decisions together, dependent on my medical history and our joint understanding of my reactions to these kinds of medications. This is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
150mg Twice Daily (+ 20mg Propranolol Twice Daily)
The first phase of the reduction was a little over a week and I didn’t feel particularly different. I was still feeling depressed and hopeless and miserable; I was so incredibly anxious. I didn’t want to be around people: I just felt so overwhelmed and oversensitive. I was feeling pretty unmoored and lost but on the worst days I felt pathetic and unaccomplished and useless. It was awful. Plus, it was a pretty hard week: although I had one really good hangout with a friend, I also had two quite upsetting medical appointments and a migraine that lasted several days.
Sleep-wise, it was still a struggle – as it has been for months. Getting to sleep was frustrating; sometimes it took hours, even on the few occasions that I took sleeping pills (I haven’t found them helpful since I tried ADHD medications back in November last year, which have thoroughly screwed up my sleep). The longer my difficulty with sleeping goes on, the more anxiety I have around it, which definitely isn’t helping. When I finally did sleep, I slept badly with the vivid, stressful dreams that I’ve come to associate with the changing of medications. I’d sleep late – into the afternoon – but even then, when I had managed to get up, I was still tired and sleepy, actually falling asleep on the sofa during the day several times.
I was craving food – particularly salty foods – but nothing satisfied the craving, which was incredibly frustrating.
It’s probably worth noting that I was in the middle of a pain flare up, with the pain mainly in my arms around the elbow. It was pretty bad, worse than the chronic pain has been for a while. It was especially bad in the mornings and was part of why I struggled to get up once I finally managed to wake up. It was so bad one day that I had to cancel my hydrotherapy session because just the thought of washing my hair in the shower had me near tears. Fortunately, it did start to get better by the end of the first phase, much to my relief.
150mg Once Daily (+ 20mg Propranolol Twice Daily)
The second phase of reducing the Moclobemide lasted ten days. It was a hard week: I was very depressed (and the suicidal thoughts were back) and I was easily overwhelmed and upset. It felt like my brain just wouldn’t shut up and kept magnifying all of the most distressing or anxiety-provoking thoughts I had; I was doing my best to keep myself distracted by mundane stuff as much as possible but I wasn’t always successful. As I said, it was a really hard week.
It was still taking me hours to get to sleep, even on the nights I was falling asleep on the sofa. Most nights, I slept badly and I had more of the same vivid, stressful dreams (and nightmares) before struggling to wake up, no earlier than eleven. I was sleepy within an hour of waking and Red Bull didn’t seem to help. I was so tired and so sleepy during the day; I fell asleep on the sofa in the day several times during those ten days. I was so tired all the time that I struggled to get anything done.
I was still craving the sensation of eating – especially salty foods, as I said – but again, food just wasn’t satisfying or filling in any way. I’ve got it under control for the most part – I’m getting better at resisting the urges and eating according to what I should be eating and not what I randomly want to eat which I then get no pleasure out of anyway – but it’s very frustrating. I’m also talking to a nutritionist about the specific salt craving and she’s sent off for blood tests to determine whether I have a vitamin or mineral deficiency that needs attending to.
The chronic pain got bad again after it’s momentary dip. It was so bad that it was repeatedly waking me up in the night and washing and drying my hair was an exhausting experience. I had several really bad pain days that made it a struggle to concentrate, to do anything. I also had a several horrible migraines that took me out of commission for a couple of days each, which was very unpleasant. They have been worse though so I’m grateful for that.
Washout (+ 20mg Propranolol Twice Daily)
The one day washout period was awful. I was deeply depressed with suicidal thoughts; I was barely functional. Fortunately, it was just one day without medication rather than the usual two weeks. That’s always the worst part of changing medications for me so I’m grateful that it was so short this time.
So coming off the Moclobemide wasn’t fun but it wasn’t as terrible as it could have been either. I’ve definitely had worse. I’m just glad it’s over and now I’m onto the next medication, which will hopefully be better. It’s hard to stay hopeful when I just seem to be finding medications that don’t work but even when I do feel hopeless, I honestly don’t know what else to do. So I just keep going.
[I just thought I’d add that, a few days after this, the chronic pain faded and I started to feel a lot better. So that was very good news.]
Category: chronic fatigue, chronic pain, depression, food, heds, medication, mental health, sleep, treatment Tagged: antidepressants, appetite, chronic fatigue, chronic pain, depressed, depression, drowsiness, eds, ehlers danlos syndrome, food, heds, hypermobile ehlers danlos syndrome, maoi, maois, migraine, moclobemide, side effects, sleep, withdrawal symptoms

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.
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.
Finding Hope