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.
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.
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 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