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.

The Empty Semester of My Masters – The Other Side

Back in June, I made a post about what had been my plans for the empty semester of my Masters and how I’d adjusted those plans according to the pandemic and subsequent lockdown. I was still hopeful that I could get a lot done in the time before my next semester started but the pandemic had a massive effect on my mental health and therefore my productivity so it took me a long time to gather myself enough to do anything even vaguely productive. So while, in pre-pandemic times, this list of completed goals probably would’ve felt disappointing, I’m trying to shed those expectations and be proud of what I’ve achieved considering the current circumstances.


MANAGED TO DO:

  • Sort through my clothes – I actually did this twice because I know that I get decision fatigue and end up keeping things that I don’t want because that’s the easier option. So I did a second sort through, reducing my wardrobe further. There’s still more than I’d like to get rid of but I feel like I made a serious dent in what felt like a pretty overwhelming situation.
  • Watched some of the things on my To Watch list – For a while, I only felt able to watch familiar things because it didn’t feel like there was the space in my brain for new stories or characters but eventually a few things started to catch my eye and it turned into a really good method of escaping all my anxiety about the current situation. I’ve also been watching quite different things, which has been fun. Plus, it’s a great source of inspiration while not much is happening in my personal life.
  • Improve my piano skills – I’ve spent a lot of time playing piano during this unstructured time and not only has it been really fun, I have actually improved. For a long time, I couldn’t hear or see any improvement but recently, I’ve been able to do things or pick up things much quicker and much more easily and that’s really exciting, even if there is still so much more to learn. To be fair, it’s not like that isn’t a universal fact.
  • Music Theory lessons – These didn’t even up happening the way I thought they would but I’ve spent some solid time working on my theory in the hope that it will make the upcoming Musical Language module less stressful and more fun.
  • Shot a music video – Despite the current circumstances, somehow Richard Sanderson and I managed to come up with a safe way to make a music video for ‘Back To Life‘ (from concept, to planning, to execution). It was actually fun, despite the high levels of anxiety I was experiencing. I hadn’t thought we’d be able to do it but somehow we did and I’m really proud of the result.
  • Get caught up with my photo albums – Despite the death of my computer, setting up a new one, reorganising my entire photo library, setting up the albums on the computer, and choosing photos for the eighteen months I was behind by, I somehow managed to get my photo albums up to date. It was a massive job, a much bigger one than I’d anticipated, so to have done it feels like a really big achievement, especially given how long I’ve been wanting to do it.
  • Start coming up with ideas for my Masters final project – As I said in the original post, the project isn’t for several months still but I wanted time to find a concept I could really engage with. I’ve jotted down a list of potential ideas (which I do have to find as it’s apparently wandered off…) and spoken to one of my tutors about it. He was really enthusiastic about the ones I mentioned so I feel like I’m off to a good start.
  • See a meteor shower – Me and my Mum drove out of the city and lay in a field to watch the Perseids meteor shower in August. It wasn’t the best meteor shower I’ve ever seen but we saw a handful of fairly decent shooting stars and it was a really clear night so just looking up at all the stars was a beautiful, pretty profound experience.
  • Catch up with my friends – Obviously when I set this goal, I’d imagined hanging out at people’s houses, movies nights, going to the beach, and so on. But then the pandemic happened (or more specifically, began…) and none of that was possible. Considering the amount of anxiety I’ve been dealing with, I think I’ve done an okay job of staying in touch with my friends, doing video calls and Netflix parties. Since the restrictions have eased a bit, I’ve seen a couple of friends too (socially distanced, of course), which has been really nice since I do find the constant communicating via screens exhausting.
  • Write new songs/work on old songs – I haven’t been as productive as I would’ve liked to be during this period but then my creativity is always negatively affected when I’m struggling with my mental health. But I’m trying to remember that I’ve done the best I can. At no point did I give up (beyond taking a break to avoid unnecessary distress) and when I couldn’t directly write songs, I worked on surrounding areas, like production or chord progressions and so on.
  • Have as many cowriting sessions as possible – I’d planned to do as many cowrites as possible, with as many people as possible, and while writing sessions have been possible via platforms like Zoom, I must admit I find it much more difficult to be creative and collaborative when I’m not in the same room as my cowriter. That doesn’t mean it’s not possible and I’m pleased with what I have managed to do but doing it this way has meant that I haven’t done nearly as many sessions as I’d hoped, especially as I have found Zoom sessions with less than familiar people harder to do than spending time with less than familiar people. If that makes sense.

IN PROCESS:

  • Catch up with my diary – I’d really hoped to have caught up with the diary I was behind on and then aborted when lockdown began, wanting to document this surreal experience in real time. I’ve been trying to catch up alongside everything else but I’m still behind and with everything going on at the moment, I’m behind in the current diary too. So when I start university again, I’m going to be trying to write three diaries at once, which feels very stressful. I’m not sure what I’m going to do about that but I’m going to have to figure it out because, if I haven’t said it before, OCD’s a bitch.
  • Update my songwriting book – Initially I made quite a lot of progress, writing up a decent amount of my more recent songs, but then I realised that I’d somehow left out a significant number of songs. That was very frustrating. And since then, I haven’t been quite sure what to do. I hate the idea of having them out of order but I’m also reluctant to add to my workload by making the decision
  • Sort out my bedroom – I’ve made a lot of progress over the last several months and it looks and feels so much better but I’ve been waiting for a couple of sets of shelves to arrive to help me better organise all the ‘loose ends’ of my stuff, if that makes sense. There’s just still a lot of bits and pieces around that don’t have their own space. I think that, once that happens and once all those things are a bit more organised, I’ll feel like most of the work is done. I’m looking forward to that.
  • Create my studio space – Again, I’ve made a start. I don’t have all the equipment I’d ideally want. For example, I wish I had some better speakers. But I’ve set up the equipment I do have, although it’s still a bit trial and error when it comes to the most effective set up. I’m still not super confident when it comes to all of this but I’m learning all the time. So we’re getting there, step by step.

COULDN’T DO:

  • Mental Health Awareness assemblies – Obviously these didn’t happen as the schools were closed when Mental Health Awareness Week was happening.
  • See Waitress The Musical again – This wasn’t possible as the show’s run closed during lockdown. I think it’s so sad that they didn’t get the finish. The show closed after Sara Bareilles’ last show so she and Gavin Creel (who played the male lead) had their closure but I’m sure Lucie Jones and David Hunter were really looking forward to coming back. Plus the rest of the cast must’ve been sad to see the show end with so little warning. They’d earned the chance to celebrate the incredible show they put on and the amazing run they had and it’s heartbreaking that they haven’t been able to do that.
  • Concerts – Concerts are only continuing to be rescheduled and even though some socially distanced shows are happening, I’m not at all convinced that it’s safe yet. I miss them so much but I can’t imagine feeling safe in that sort of environment for a really long time.
  • London gigs – Again, I’ve had a couple of booked gigs rescheduled multiple times but then it’s so hard to make concrete plans when we have no idea what the even near future holds. So I’m just trying to take things as they come, make responsible decisions, and not worry too much.
  • Get back to swimming regularly – Obviously for a long time the gyms were closed. When they opened up again, I went to see what their precautions were like but I really didn’t feel safe. The gym have been great about trying to make it easier for me to access their facilities as a disabled person but I’m still not completely convinced. We’re continuing to try to make swimming a possibility and maybe now that so many people are back in school, there will be more periods with less people. We’ll keep trying. I really miss it.
  • Improve my guitar skills – As I’ve already said, it took a long time for me to manage anything beyond staring at the TV in a perpetual state of panic and then, just as I started to feel capable of doing things, I developed awful pain in my arms, from my shoulders to my fingertips. Sometimes it was sharp, shooting pains, sometimes it was a deep ache, and sometimes I’d wake up to find my fingers completely numb. That’s been going on for most of this ‘semester,’ although it has started to improve recently. I still have a specialist doctors appointment at some point to assess the problem so hopefully I’ll be back to playing guitar soon.
  • Read some books from my To Read List – My ongoing anxiety has done a number on my concentration, particularly when it comes to reading. I’ll try to read a book, only to realise that I’ve read several pages and have no memory of what they said. I miss it and I am worried about what will happen when I get back to uni work but that’s the situation as it is at the moment. I’m talking to my Psychiatrist about it at my next appointment.
  • EP Gig – Since my timeline for the Honest EP has been pretty flexible, I wasn’t sure when the last single would be released and when therefore when we’d have the gig to celebrate the EP’s completion. As it’s turned out, the final single isn’t out yet so that’s not something I would’ve had to worry about, even if we had been able to put on events.
  • Start learning the Kalimba – Just as I’d managed to wrestle my motivation towards the Kalimba, I discovered that there was a problem with the one I’d bought and so won’t be able to start learning it before university starts again but I do still really want to learn. So I’m just going to have to reschedule that to a later date.

DIDN’T MANAGE TO DO:

  • Create a space to make YouTube content – This wasn’t hugely high on my list of priorities so it doesn’t surprise me that it’s one of the things to fall by the wayside. Plus, I haven’t completely finished the practical elements of my room so I think it’s something I can pursue without too much difficulty once that’s done.
  • Take some classes on Skillshare – I’ve struggled with my concentration throughout lockdown but most especially when trying to do things that involve absorbing new material so I didn’t manage to do much extra curricular learning. I managed a few TED Talks and read articles but I haven’t managed any in depth study like taking classes on Skillshare.

So, as I said at the beginning of the post, I’ve been trying to realign my expectations as to what has been possible during this time, based on the lockdown restrictions and my fluctuating mental state. With everything so uncertain, it was impossible to know what I’d achieve. Looking at this list now, I’m proud of myself. For the most part. And in the moments when I feel frustrated or disappointed, I acknowledge those feelings, let them have their space, and then try and let them go. I don’t always succeed but I try. Because, given everything going on, I think what I managed to do – especially looking back at how I was (or wasn’t) functioning at the beginning of lockdown – is something to be proud of. And when I can’t feel proud, I practice proud.

Now, on to the next semester.