Venturing Back To The Gym – Part 1

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.

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.

An Assessment With A Difference

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…

  • Continue swimming, adding in the exercises she suggested to strengthen my core muscles.
  • Pursue the pain management route, particularly hydrotherapy (as available with the lockdown).
  • Try gentle pilates exercises for core muscles.
  • Get a heart rate test and a blood pressure check and see where that leads us.
  • Talk to my regular psychiatrist about the other anxiety medication.

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.

Creative Difference: Exploring Art And Autism

Recently I attended a webinar hosted by the Autism research charity, Autistica, about the relationship between Autism and art and it was really interesting. The panelists were Professor Jonathan Green (Autistica Trustee, Professor of Child/Adolescent Psychiatry at Manchester University, and artist), Sarah Jane Bellwood (artist and gallery owner), Lizzie Huxley-Jones (editor and author of Stim: An Autistic Anthology), and Jane Elizabeth Bennett (multi-disciplinary artist and researcher).

Each person introduced themselves and then the discussion began. I found the whole thing really fascinating so I thought I’d pull a few quotes from the video that I thought were particular highlights, but I thoroughly recommend watching the whole video to hear all of the points made.

So here are some quotes that I found really interesting…

JANE ELIZABETH BENNETT: “I think art is the first language that I really kind of learnt. So, for me, art is a way to speak, it’s a way to communicate, it’s a way to convey emotion, and they’re not always things that I’m fantastic at doing in a kind of neurotypical way. For me, art is a very atypical way of communicating. You do it through colour, you do it through gesture, you do it through sound.

I love this description of art and it’s something I really relate to as an artist. I definitely use my songwriting to tell stories and relay experiences and share emotions. I do that through the lyrics, through the melody, the vocal performance, the arrangement and instrumentation, as well as the production. While, for me, the song is the piece of art in its purest form, the performance, the arrangement, and the production are all a vital part of conveying and enhancing the emotional experience. I definitely experience Synaesthesia to some degree: sounds have colours (and some even have specific tastes) as do emotions and so a big part of my process is trying to bring those experiences together; I’m often only happy with a song when the emotions, sounds, and colours are completely in sync.

JONATHAN GREEN: “And I was totally absorbed in doing this drawing, like nothing else existed except what I was doing. And I came out of it an hour or two later or something and I think I felt, ‘That’s the most real thing that’s happened to me for a long time… is that connection, with that plant through drawing.’ And I think that’s, for me, why I held on to it… was that it felt… it gave me an access to something that was so real… It’s allowed me to feel really real.

Having just written and finished a song is when I feel most real, most alive. Sometimes I feel like I don’t really exist and when I finish a song I’m proud of, it’s like a realisation that I really do exist. It’s the only time I feel in sync with the universe. I never feel so connected to myself as when I finish a song, or to other people as when I perform a song I’ve written and they respond to it. We’re all in this single moment, experiencing this thing together and it’s magical.

LIZZIE HUXLEY-JONES: “We should have the space within an industry to create whatever we want.

JANE ELIZABETH BENNETT: “I think it’s very important that as an autistic artist… it’s very important to have that space to make work that isn’t about Autism. Just because I’m autistic doesn’t mean I have to be, like, the voice of Autism but I think my Autism – just as a personality or as a writing style – is gonna be inherent in the work I make.

LIZZIE HUXLEY-JONES: “The way I describe it is, ‘we experience everything autistically so why wouldn’t everything we create be a little bit autistic as well?‘”

I think these are really important points: just because we’re autistic, it doesn’t mean that we have to create art about being autistic. Many do because it’s an outlet for their individual experiences or because it’s a way to make sense of themselves but we should never be pigeon holed into just creating Autism related work. How much space Autism takes up in our lives is different for everyone and we obviously feel and experience unrelated things that we want to make art about so not all autistic artists will choose to make art about Autism. But as Jane points out, being autistic likely will influence the work we make because it influences the way we perceive the world. Day to day that can be incredibly frustrating but when it comes to art, it can be something that makes our work special and different.

JONATHAN GREEN: “I think, for me, making art or the process of making art does help me make sense of things or sort my mind out in some way. I always feel, kind of, more in harmony after I’ve been making art. Internally, you know? Kind of rebalanced, or something like that.

I can absolutely relate to this. I definitely feel most calm, in mind and body, when I’ve just finished a song. It’s not too far from the experience I described earlier, about feeling real and alive and in sync. I also feel this real sense of inner calm. It’s like everything within me has been shaking and it’s suddenly stopped. It’s like all these disconnected pieces have come together and everything makes sense. It’s not dissimilar to how I imagine getting high feels.

There were a couple of things that bothered me though. I felt like having three visual artists and one writer wasn’t the best representation of artistry; they could’ve had a musician or sound artist, an animator, a photographer, etc and that would’ve created a more varied discussion because the forms of art were more varied. The discussion was really interesting as it was but I think a wider variation of art forms would’ve only added to that.

There was one thing specifically that I really didn’t like and that was the repeated use of the word ‘obsession’ in place of ‘special interest,’ the term more commonly used in Autism. I know that some people don’t like the phrase ‘special interest’ (I must admit I don’t love it) but I don’t think that that’s a good reason to revert to the word ‘obsession,’ a word that has some very negative connotations. Various definitions of ‘obsession’ involve the terms ‘unhealthy’ and even ‘disturbing’ and while I can’t speak for anyone else, I find those associations with my special interests uncomfortable and actually upsetting. I’ve had a handful of special interests in my life and none of them have been unusual in subject (animals, writing, singing, songwriting, to name some), but the intensity of that interest and fascination is what stood out. Definitions of ‘obsession’ also include the idea that they dominate a person’s thoughts, that they have control over you (which links back to the idea that they’re unhealthy), which, again, I personally wouldn’t associate with my special interests. While I think about my special interest – songwriting – a lot and would prefer to spend all of my time doing it, I can think and do other things and I can recognise when I’m spending too much time doing it and neglecting the other areas of my life. And during my research into the difference between ‘obsession’ and ‘special interests,’ I found several articles about how helpful and positive engaging with special interests are for autistic people (here and here). In the former, the writer, Laina Eartharcher, makes many good points that I feel I should quote rather than attempt to paraphrase:

  • “They soothe and calm me.”
  • “My interests do not dominate my thoughts the way that is consistent with an obsession. It’s not like I can’t think about–or talk about–anything else. It’s not like I can’t set my other interests aside and focus on my daily work. It’s not like I can’t get anything else done. If my interests were indeed obsessions, none of that would be true; my life outside of the interest would have come to a full stop.”
  • “For me, it’s all about relaxation and curiosity. I want to learn, focus, explore. And I want to do so in depth, with a sense of completeness. I don’t want pieces of the picture, I want the whole picture. I want to connect dots. I want to reach understanding. I want to feel solid in my knowledge. Tidbits and soundbites just don’t do it for me. They’re pointless and unsatisfying. It’s like, what’s the point of spending time gathering a bunch of soundbites and headlines? Meh. Give me the whole story, or don’t bother me with it.”
  • “I would like to see the ‘obsession’ association fall out of favor. It’s not accurate. It’s not nice. It lacks understanding.”

I relate to all of these statements and fully agree with her. ‘Special interest’ may not be the perfect word but the use of ‘obsession’ can be damaging and create misunderstandings about Autism. So it did really bother me how many times this word came up and the fact that it was never addressed, even briefly. I want to talk about special interests more in the future – I think it definitely deserves its own blog post as a subject – but as it came up here, I felt like it was important to talk about.

But that issue aside, I found the webinar to be a really informative, enjoyable experience and I look forward to similar events that Autistica puts on. I’ve followed several of the speakers on social media and have enjoyed delving deeper into the work they’ve created. As an autistic person, I’m always intrigued by the work of other autistic people and to what degree they experience and interpret the world in the same way I do and then (if they do) how they translate that into art.