Posted on November 21, 2020
As I’ve mentioned before, I’ve struggled with extreme fatigue all my life (I talked about this in my ‘Tired‘ blog post); Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (often referred to collectively as ME/CFS) have been tossed around since I was twelve years old but I wasn’t officially diagnosed until last year. This kind of acute ‘unexplained’ fatigue – unexplained as in there is no obvious cause, such as exercise or lack of sleep – is also a common experience for autistic individuals, as well as related symptoms like headaches and bodily pain.
I’ve been managing these high levels of fatigue for most of my life, trying various things to improve my quality of life. And I continued searching for a cause. I had test after test but nothing ever gave us an explanation. I resisted the ME/CFS diagnosis even as it seemed more and more likely because there’s no cure, not even a reliable method of management, but eventually it seemed the only way to move forward. So, after a long talk with my GP, she officially diagnosed me with Chronic Fatigue Syndrome and we began discussing various options for next steps and support. She referred me to the local Chronic Fatigue Clinic and I anxiously awaited my session.
It was a bitter, heart-wrenching disappointment. I left in tears. Maybe it would’ve been helpful when I first started experiencing these symptoms (I think the longest any of the others there had been struggling was two years) but twelve years in, I knew more than the person delivering the information, had found everything suggested to make no difference or be outright unhelpful, and I just felt so patronised. It was an awful experience and I couldn’t help but feel so angry that this was the best on offer for what I was trying to manage and had been trying to manage alone (in terms of the health system) for more than a decade.
When we spoke to them after said awful session, they referred me to a doctor that we realised I’d previously seen – years and years ago and had a very traumatic experience with. I was obviously very reluctant to go. My Mum and I spent a lot of time talking about it, about the pros and cons of going and not going. The scary thing is that it’s so easy to get kicked off every list with one refusal so I said that I would go, despite having had such a distressing appointment with him – one I’m sure he doesn’t even remember. But before we contacted that clinic, we spoke to my GP again. We explained how upsetting the experience had been and how worried we were that it was only going to be worse this time, considering I would be going in with the baggage of the previous appointment; we told her that I would go if that was how it had to be to continue on this path but she felt that we were right, that it wouldn’t be helpful given the circumstances and as I’d technically already seen him, it wouldn’t cause any problems in the system. We asked if there were any other options and this was when she referred me for the hypermobility assessment (these posts are now out of order, not only because it’s been such a confusing and complicated process, but also because I’ve had trouble keeping things like this clear and ordered in my head since the pandemic started).
I’ve now had this appointment and been diagnosed with hypermobility, which potentially explains (at least in part) my problems with fatigue and pain. (At some point, we’re going to need to lay out all of these diagnoses and work out whether there’s any overlap, whether any of them are now redundant. But that’s a job for another day.) Apparently those with hypermobility are seven times more likely to be autistic, which is a very interesting piece to add to the whole puzzle. The post goes into it in more detail but basically, we’re now waiting to find out whether or not various routes are possible. For example, I’ve been referred for hydrotherapy but we don’t know whether I’ll get it and if I do, when it will be possible with the pandemic and lockdown. That has really stalled things. So it’s one waiting game after another.
But we’re not simply waiting. We – my Mum in particular – are also looking into other angles, other medical professionals who specialise in fatigue or who have studied fatigue in depth. We’ll take any advice we can get. I resisted a diagnosis of CFS for so long because it felt like admitting defeat – an expectation that I would just have to live with it with limited options – but I don’t accept that, not anymore. I’m participating in every research study I can find that I qualify for and my family and I continue to research potential specialists and potential avenues of treatment or even simply more effective management of the symptoms. The pandemic makes it hard but I am not willing to accept that this is going to be my life, that there’s no hope. Not that long ago, NICE (The National Institute for Health and Care Excellence) removed ‘graded exercise therapy’ as a treatment for ME/CFS, after both research and those suffering with the condition proved that it was actually unhelpful at the very least. It’s slow but it’s progress. And I’ll take all the progress I can get.
Category: autism, chronic fatigue syndrome, covid-19 pandemic, diagnosis, sleep, treatment Tagged: asd, autism, autism spectrum disorder, autist, autistic adult, cfs research, change, chronic fatigue, chronic fatigue clinic, chronic fatigue syndrome, chronic pain, diagnoses, diagnosis, doctor, fatigue, gp, graded exercise therapy, hydrotherapy, hydrotherapy referral, hypermobile, hypermobility, hypermobility diagnosis, lockdown, lockdown 2020, me/cfs, multiple diagnoses, myalgic encephalomyelitis, NICE, pandemic, pandemic 2020, progress, referral, research, research study, research volunteer, tired, treatment
Posted on November 7, 2020
I really wasn’t convinced when the government reopened the gyms. It seemed to me that they were (and still are) much more concerned about the economy than people’s actual lives and I couldn’t imagine how many gyms would be able to create a safe environment with good ventilation and social distancing. I was particularly worried about this in a swimming pool.
Because of my Chronic Fatigue Syndrome (CFS) and joint problems (which we now know are linked to being hypermobile), swimming is my only good source of exercise really. All weight-bearing exercise causes me extreme, disproportional fatigue and pain in my joints that can last for days. Half an hour can essentially end my day. So I’ve always relied on swimming for exercise, which I was obviously not able to do during the lockdown. And when the pools opened again, I really wasn’t convinced that it was safe. I was desperate to swim again (I can’t believe how much I’d missed exercising – my teenage self would not believe it, although, to be fair, I had always enjoyed swimming) so I was really keen to find a safe way of doing it, if there actually was one.
We spoke to the gym where I’m a member and tried to come up with a plan. Pre-pandemic, I would swim super early in the morning when the pool was all but empty but they wouldn’t be opening that early post lockdown because of a lack of lifeguards. That meant that, even if we arrived as soon as it opened, there were likely to be many more people than we were used to and that made me very nervous. They offered to rope off half the smaller pool that’s used as a family or therapy pool (for me as a disabled person) and suggested coming as early as possible as that was when it likely to be the least busy. I was very anxious but we decided to give it a try.
There was no one in the small pool when we got there and we got into our roped off section. It felt amazing to swim and stretch my muscles. I was almost giddy with joy. But the other side and the main pool started filling up fast, with no real social distancing. I could feel the panic rising: I could almost feeling the air becoming more and more contaminated (I know it was my anxiety and my overactive imagination but that’s how it felt). As much as I loved swimming again, eventually the stress just got too much and we had to go. I don’t think we’d even been in the pool twenty minutes. It was something though and my Mum and I discussed what we wanted to do, whether we wanted to try different times, and so on.
And then literally the next day, the gym emailed to say that they felt confident with their safety measures and so would be opening the pool up to more people which, as desperate as I was to keep swimming, killed my desire to go completely. It hadn’t felt massively safe during our first trip so I couldn’t even imagine coping with more people around. The whole situation just felt incredibly stressful and scary and my anxiety would rise just thinking about putting myself in that environment.
Mum met with the person in charge of the smaller pool and raised our concerns. They said they would get back to us after a wider staff meeting the next week but they never did. Mum went a couple of times at different times of the day and thought going right before they closed was a possible option but I still wasn’t convinced; my anxiety was just so high. Even thinking about being there made it feel difficult to breathe.
In the meantime, we looked for other options, other pools that weren’t necessarily attached to gyms but where you might be able to book a slot in a lane. We went through several possibles with no success but after a while, Mum found a pool that were booking out lanes in the evenings, an hour at a time. She had them talk her through all their safety measures, which were extensive, before going to try it out. She came back with positive reviews so I thought seriously about whether I felt comfortable trying it out too.
It took a few weeks before I felt okay about going and their serious safety measures were comforting: everyone was wearing masks (right up until they were in the water); they took everyone’s temperature as we went in; we changed in little tent-like pods, each numbered, and then put our bags on chairs of the same number, situated by the changing room door (that way they knew which ‘changing pods’ had been used so that they could disinfect them, ready for the next group of people); and then once in the pool, the lanes were wide enough that you could properly social distance. So the whole set up felt significantly safer. And an extra bonus: they turned off the main lights so the room was lit with just the pool lights, creating a very calming atmosphere. It was gorgeous. And, as an autistic person, it made the whole thing a lot easier as a sensory experience. The glaring lights at swimming pools can be a bit of a challenge sometimes. So this was wonderful.
It was utterly glorious. I had such a good time. Being in the water, feeling weightless, swimming lengths, swimming down to the bottom at the deepest point, exercising my muscles… It was awesome. I loved every second. I was completely exhausted by the time I got out but it was the good kind of exhausted. It felt great. And I’d felt as safe as I think I possibly could have in the present circumstances. It was giddy with joy but also gutted that I had to wait a whole week to experience it again. I would’ve loved to do that more than just once a week.
Unfortunately the second trip wasn’t quite as pleasant. Either the rules had changed or my understanding of them had been incorrect because they were putting people from different ‘social bubbles’ or (whatever they’re called) in the same lane, which, as far as I could tell, didn’t allow for social distancing. I ended up having something that was somewhere between a meltdown, a panic attack, and an ‘episode’ of Misophobia/Germophobia (I don’t know if I’d say I have this phobia, but I’ve definitely had ‘attacks’ of it when the fear of germs or feeling contaminated is so overwhelming that I’m almost unable to function). Anyway, I was frozen there, hanging onto the wall of the deep end, unable to do anything. Like I said earlier in the post when talking about the other pool, I could almost feel the air becoming cloudy with the virus, feeling it coating everything, even the water. It was horrifying, like being trapped in a film where the world ends.
The staff were apparently very concerned and desperate to help but I couldn’t do anything but hang on to the wall; I don’t know if I would’ve had the wherewithal to swim if I’d slipped underwater. But eventually my Mum was able to coax me back to swimming, even though I kicked and cried, utterly terrified in a way that I can’t really explain now. It must’ve taken half an hour at least; I was freezing cold and apparently my lips had gone blue. After a while, I did manage to recover to some extent, at least enough to swim a bit, to warm up and not waste the time we had in the pool. The swimming felt good but the experience as a whole had been horrible and exhausting and I really wasn’t sure whether I felt safe there anymore.
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Last night’s swim didn’t go quite as well as the first. A sudden change in the rules, or at least my understanding of them, sent me into a meltdown (or maybe it was a panic attack – it didn’t quite feel like either), leaving me completely frozen, clinging to the side of the pool at the deep end. It was horrible. But my parents and the staff were great and eventually I did somehow manage to recover and get something out of the rest of my time there. Physically, I feel like shit today but that’s not unexpected. Such is life. I’ll take things gently and hopefully still get the best out of the day.
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The busyness of that night proved to be an anomaly so, although I was anxious – and to a certain degree, reluctant – I kept going and it was better. I loved it: the weightlessness, the stretching of my muscles, the exercise that came with just a proportional amount of pain afterwards, the aching of long unused muscles, rather than agony that felt like the crunching of glass in every joint. It was wonderful.
Several weeks in, I had my hypermobility appointment, which was really interesting in the context of my gravitation towards swimming because swimming and even hydrotherapy are recommended for hypermobile individuals; it allows you to exercise and strengthen your core in particular (the commonly weak part of hypermobile bodies, although it often ‘refers’ pain to other parts of the body) without putting undue pressure on your joints. This made so much sense to me, particularly as I’d been struggling with ache-y muscles in my chest and stomach after swimming when I’d expected to feel that ache in my arms and legs. That appointment resulted in a referral for hydrotherapy but the doctor also recommended some particular exercises to do in the pool in the meantime.
However, before I could even get back to the pool again, the second national lockdown was announced. So, just as I was making progress (and getting some real joy out of exercise), I was running headfirst into a massive brick wall. I agree that, with Covid-19 cases rises in England, we need another lockdown but I can also be gutted that I can no longer swim, at least not for a while. And the sacrifice would actually feel worthwhile if this was a real lockdown but while schools and universities are open – allowing students to mix with any number of other people – it’s not. It’s not going to make a significant difference and it’s just going to sow the seeds of doubt about whether lockdowns work, which THEY DO IF DONE PROPERLY. Anyway, I’ve gone on a tangent. I don’t know when I’ll be able to swim again but I’m grateful to have somewhere that takes the safety measures so seriously to go when it is possible. I’m looking forward to it. I’m really, really looking forward to it.
Category: anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, diagnosis, meltdowns, treatment Tagged: anxiety, anxiety attack, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, autistic meltdowns, cfs, chronic fatigue, chronic fatigue syndrome, contamination, coronavirus, covid-19, exercise, exhaustion, fatigue, germophobia, gym, hydrotherapy, hydrotherapy referral, hypermobile, hypermobility, hypermobility diagnosis, joint pain, lockdown, lockdown 2020, meltdown, misophobia, pain, pandemic, pandemic 2020, panic attack, social bubble, social bubbles, social distancing, swimming
Posted on October 28, 2020
Over the summer, I received a letter from the local Neurobehavioral Unit. My GP had referred me to them for specialist support for pain (joint pain and pain in general) and I had an appointment with a psychiatrist there who specialises in and has done extensive research into hypermobility, pain, fatigue, and anxiety. I had no idea what to expect or what I was going to get out of it but I’m always willing (even if sometimes a little wary of) trying new things that might help.
My GP had recommended I have a full set of blood tests first so that we had the full, up to date picture before the appointment so I had that done at my local doctors’ surgery. I was a bit nervous about going – with the pandemic and all – but it was quick and easy. I was in and out in less than fifteen minutes. We got the results back a week later: for the most part they were good (my iron is back within the normal range, which was the problem last time) but my Vitamin D was seriously low, so low that I’ve been prescribed a ten week course of Vitamin D supplements.
And then this week, I had the actual appointment.
It was an online appointment but the conversation felt surprisingly easy and natural. Dr J (I’ve decided to refer to her this way to protect my privacy, even though doctor-patient records are, of course, confidential) introduced herself and we talked a bit about her work and what we could potentially get out of the session.
We talked about my Autism diagnosis and she had me do a series of movements with my hands and arms, all of which confirmed a diagnosis of hypermobility. As far as I’m aware it was in the notes from my Autism assessment but it hadn’t been officially diagnosed in its own right. She told me that people with a diagnosis of hypermobility are seven times more likely to have a form of Autism. Seven times! She asked me lots of questions about pain and fatigue (both of which I seriously struggle with) and went on to explain that hypermobile people have weak core muscles which often results in fatigue and pain in other areas as the body compensates. That makes so much sense. It’s all so fascinating to learn. The more I learn about the things I’ve been diagnosed with, the more I understand how they’re all part of a bigger picture, how they link together like the strands of a spider’s web or stars in a galaxy. It all gets clearer and I feel less overwhelmed and less lost; it feels like seeing order in things that used to look random and that is so incredibly helpful. All of the things I struggle with often make me feel broken and moments like this help me in the slow shift from ‘broken’ to… ‘incompatible,’ or something like that. Something less personal. Is it a program’s fault if it isn’t compatible with the computer? No. And with that in mind, it all becomes more about problem solving and work arounds and less about right and wrong. At least, that’s the concept I’m trying to work towards.
She said she would write to my GP and have me referred for pain management, specifically for hydrotherapy. I’ve just started swimming again – Mum and I finally managed to find a pool with a set up that feels safe, or as safe as is possible right now and safer than the others we’ve spoken to – so that would be perfect; I would love to do it, to get fitter and stronger through exercise I enjoy (and that doesn’t cause me ongoing physical pain). I don’t know if it’s available right now – with the pandemic and social distancing measures – but I can’t wait to do it whenever it is. But in the meantime, Dr J recommended some exercises to do in the pool, as well as some very gentle floor based core-strengthening pilates.
She also asked questions about sensitivities, allergies, hay fever, dizziness on standing, lightheadedness, and symptoms like that. I’ve definitely experienced all of those, although not all consistently. When I’d answered all of those questions, she recommended I have a heart rate test and a blood pressure check and said she’d include that recommendation in the notes she’d send to my GP. If they showed numbers within a specific range, given the other symptoms we’d talked about, that could apparently give us another area to explore, health wise.
We also talked about my anxiety and the medication I take for it. She suggested an alternative that might be better suited to my situation so that’s something we’ll discuss with my psychiatrist when I next speak to him.
So Mum and I learned a lot and we have plenty of avenues to explore…
To be completely honest, it was a bit of a strange experience. I mean, it was really helpful and productive but it was odd for a very specific reason. It was easy. It was a conversation. She asked me things and I answered them. She believed me; she offered lots of advice and suggestions; she’s writing everything up and sending it to my GP. It wasn’t a fight… when up until now, it’s always been a fight. It was this beautiful, precious thing: to ask for help and have someone give it to me, with kindness and understanding and generosity. There will be more fights, I’m sure… more battles, but for now, I’m going to hold onto this feeling and memorise it so that I have it in my pocket like a touchstone for the next time I have to fight to get someone to stop and listen.
Category: anxiety, autism, chronic fatigue syndrome, diagnosis, medication, mental health, treatment Tagged: allergies, anxiety, anxiety disorder, appointment, asd, assessment, autism, autism spectrum disorder, autistic adult, blood pressure, blood test, exercise, fatigue, hay fever, heartt rate, hydrotherapy, hypermobile, hypermobility, medication, multiple diagnoses, neurobehavioral unit, nhs, pain, pain management, pilates, swimming, vitamin d
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…