A Week In My Life (November Reading Week)

While I was going to write a series of posts about the events of this week, the way all of those events played out made that much more difficult than I’d anticipated so, after a lot of thought, I decided to put them all together in one post because I still really wanted to write about all of them. It was an intense week, with some really big events and a lot of anxiety.

The week in this post started on Monday 2nd November and ended on Sunday 8th November 2020, the autumn semester’s reading week. It involved an Autism webinar, the US election, Bonfire night, as well as the beginning of England’s second national lockdown.


MONDAY

My Mum was visiting her Mum, masked, social distanced, and outside where possible before we all go into lockdown again. So I was all on my lonesome, which is pretty unusual these days. Apart from the cats. Once Queen Lucy realised I was awake, she was climbing all over me, very clearly telling me that it was time for breakfast. So I dragged myself out of bed and went downstairs to feed the pride.

I spent the morning doing various admin tasks like replying to emails and finishing a couple of blog posts before having a shower, getting back to my computer in time to get a ticket to Tim Minchin’s upcoming livestream for his new album, Apart Together. It’s scheduled for the end of November so that will be something really fun to look forward to during lockdown. In the description of the event, they describe him as an ‘inimitable poly-talent,’ which is absolutely true and I just can’t help thinking what it would be like to be described that way. What an awesome compliment.

That done, I settled into my little home studio space and got to work. There were a handful of songs that I had been neglecting and so I finally forced myself to stop procrastinating and prioritising other things and spent several hours recording vocals for them. It’s stupid: I don’t know why I put off recording vocals so much. I guess they make me feel anxious and insecure, like I’ll listen to myself and suddenly realise what a terrible singer I am (which, yes, I recognise is ridiculous because while I know I’m not the greatest singer out there, I know I’m not terrible). But anyway, I always put it off and then when I finally do it, I remember how much I enjoy it. As I said… ridiculous, and yet we’ve all had that experience in one way or another.

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It was a challenge because it was really windy outside, so windy that the microphone was picking it up and I had to delete multiple takes because the wind noise was so obtrusive. And then, Lucy decided that she was being left out of something important. I managed to convince her to lie on my bed (instead of climbing all over me) but even her stretching and clawing the duvet was making it into the recordings. I ended up barricading myself in my bedroom for the rest of the tracks. Fortunately, she (and the others) didn’t start yowling until just as I was finishing up so I was able get everything done without the feline interruptions. I think they’ve developed a form of separation anxiety after having me at their complete disposal (by which I mean I’m available to be sat on at almost all times) since late February and the closed door was just unacceptable.

I had a short time to rest and order my thoughts (change hats, if you will) before signing into an online meeting about an upcoming conference that I’m a panelist for. Just typing that out is wild to me; this is something I’ve always wanted to do. I mean, ideally it would’ve been on a literal panel, talking directly to people, rather than through a screen, but I’m not complaining. I’m nervous but excited. The other panelists were all really nice and we had a good discussion and planning session.

I was pretty knackered after all of that so I lay down on the sofa and attempted to do some blog post writing. I didn’t get very far – I think I was just too tired – but I made progress on a couple of posts so that was something.

I had a place on a webinar in the evening about Autism in young people but as hard as I tried, I couldn’t get into it and the anxiety and frustration and confusion – likely combined with my anxiety about the pandemic, the US election, and the impending lockdown – resulted in a lot of distress. I wouldn’t call it a panic attack or a meltdown but it was a serious overload of difficult and upsetting feelings. I talked to Mum about it afterwards and she suggested emailing them to see if they had a recording I could watch since I’d paid for a ticket and then not been able to attend. So that was a job for the next morning; I was too upset and all over the place to try and write a coherent email.

Despite not attending the webinar, I ended up staying up far too late, bouncing between writing for my blog and in my diary. Lucy curled up with me and, completely exhausted, I was asleep in a matter of minutes.


TUESDAY

I woke up with a headache that even my prescription painkillers couldn’t kick. I’d had a busy day planned out, with the US election the next day (I knew it would dramatically affect my emotions and therefore my ability to work so I’d planned to get as much done beforehand as possible). I tried to get up and get things done but I just felt so unwell that I ended up shifting my week around to give myself a lighter day. I just couldn’t do the more demanding tasks I’d planned to do.

I didn’t manage to get much done that morning. My head was pounding and I was tired and I just couldn’t concentrate enough to get as much done as I would’ve liked to. I did start the essay for this module for the Masters, working out the different sections and the elements I could talk the most about. I also managed a little bit of blog writing; I swear, just as I think I have a decent buffer of posts, they’re gone and I’m panic writing to make sure that I have something to post (not that I’m panic writing this post – I just thought I had more posts lined up than I do).

Early afternoon, I joined the the video call set up by a group from my Masters classes last year (they were the full timers who’d done the whole course in one year while, as a part timer, I’m taking two years to do all of the modules) to watch their online graduation ceremony. As far as I know, everyone was watching the ceremony but not everyone was in the video call, including one of my best friends but we were chatting via WhatsApp. When the ceremony ended, the university had organised video calls for each course and so the majority of the full timers logged on, plus a few of the part timers as well as our course leader to celebrate together. Some of the other tutors on our course also dropped in briefly to say hi. It was so nice to see them all. It feels like so long since I’ve seen most of them and I do miss them; I feel like we had a really lovely dynamic. We chatted and caught up and had a drink together and the whole thing ended up going on for about three hours. I was pretty social-ed out afterwards but it had been so nice to see everyone and celebrate their achievements.

Not long after we all hung up, my Mum took Lucy to the vet as I think the cysts she developed a few months ago have returned. They were back within the hour and the vet had confirmed my theory. The recurrence has also confirmed where they’re coming from and so she’s booked in for surgery on the 12th to remove the cysts and hopefully fix the problem. Apparently it’s not much more complicated than the previous surgery and she’s a very healthy cat so there’s no reason to worry unduly. He’s a great vet: we haven’t known him long at all and yet he already takes my high levels of anxiety into account when giving explanations and laying out the options. I really, really appreciate that.

Lucy has never seemed distressed by going to the vet but she’s always very pleased to be home. She often comes and cuddles up with me if possible though. I don’t know if she feels in need of affection, if she was trying to get rid of the unfamiliar smell of the vet, or whatever but it was very cute.

We weren’t confident about the support bubble rules going into the second lockdown so one of my other parents (who we’re in a support bubble with) came over for the evening and we hung out, had dinner, and watched some TV together. It was really nice and I think we all needed it.

Throughout the afternoon and evening, I’d been working on a personal essay to go out as part of the campaign for my recent single, ‘Honest,’ and I finished it at around eleven. I could barely keep my eyes open by that point but I thought it was at the very least decent, as did my Mum when she proofed it for me – I’ve had much more positive feedback since, which has been good for my confidence as I was feeling quite insecure about it. But anyway, given how tired I was, I decided to leave it as it was and have another look at it in the morning before sending it off.

I’d been doing my best not to think about the US election all day, avoiding social media as much as possible, but when I went to bed, all the anxiety rushed in. I was so terrified of Trump getting in again; I was almost overwhelmed by the dread of waking up to that as the result. As hard as I tried, I couldn’t relax enough to sleep and ended up taking both my anti-anxiety medication and a sleeping pill.


WEDNESDAY

While I think we all felt that it was unlikely we’d wake up to an official result, it was nonetheless tough to wake up and see that it still wasn’t over. But worse, was that it could still go either way when I checked the news first thing. I saw this meme making the rounds on social media and it felt very relevant; I’m pretty sure that this was how my face looked.

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It ended up being a long, anxious day of refreshing the various news sites, waiting for updates and not getting much done. I did manage to edit the personal essay and send it off but other than that, I just bounced between writing blog posts and working on my Masters essay without making much progress in either. I was just so anxious; I felt like I couldn’t breathe. I may not be American nor do I live in the US but I have friends and family who do and the political decisions made there have the potential to ripple so far out, affecting so many countries and so many people. So to say I was stressing would be a massive understatement.

Slowly though, the numbers did start to shift in favour of Biden more and more. It wasn’t a done deal by any means but it was going in the right direction. I was refreshing my phone relentlessly; I could barely concentrate for five minutes without having to check to see if there was an update.

In the evening, Mum and I had dinner and then went for one last swim before lockdown closed all the gyms. We tried to make it as safe as possible, going close to their closing time when it’s always quiet. Plus they keep all the doors open to help with the ventilation. I still almost fell apart in the changing room because the experience was so stressful – whether it would’ve been a meltdown or an anxiety attack, I don’t know. But the staff helped us out and the few people swimming were very obliging about making it possible to put as much distance between all of us as possible.

We had a really good swim, including some of the new hydrotherapy exercises, and by the time we got home, Biden only needed six electoral votes to win and Trump needed fifty six. I was so excited; I actually felt like I might throw up from the anticipation. Again, I found it very difficult to sleep.


THURSDAY

And so begins Lockdown 2.0…

I slept long and deep and when I did finally wake up, I didn’t get up for quite a while, going through the election coverage. The numbers hadn’t moved and it was making me edgy.

I got up, had breakfast and a shower, and got down to working on my essay. I’d only been working on it for about half an hour though when a friend called and we ended up talking for over an hour. It might not have been the way I’d planned my morning but it was really good to have that chat; I felt better for it.

When we hung up, I managed to do a bit more work on my essay before getting myself made up to do some filming. It’s getting dark so early now that I couldn’t wait any longer or I’d lose the light. I set up my little corner (I’d love to have a more permanent space at some point) and filmed some bits and pieces for the ‘Honest’ single campaign. It was a bit of a struggle – cold and uncomfortable and the cats wouldn’t leave me alone – but eventually I got them all done, which was an important job to have ticked off my list.

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That done, I went back to my uni work. I spent most of the afternoon working on one of my song assignments: a reimagination of one of my own songs. It’s weirdly hard: you spend so much time trying to make a song perfect and then you have to turn around and create something entirely new from it, bring out a different emotion or try it out in a different genre. I took this really big, fiesty pop song that had this whole ‘I don’t need you’ vibe and turned it into this quiet piano song that was based on the moment of that realisation when it’s still fragile and tentative. I worked on changing the chords and then recorded them but they were still just one chord per bar; I planned to take it to a friend who is a much better piano player than me to help me expand on it, breaking up the chords and changing it a little for each section to keep it engaging since it was just going to be piano and vocal.

I was just finishing and stretching out on the sofa to relax when the fireworks started going off. I hate Bonfire Night. If you’ve read this post, you’ll know why but the short version is that, not only do fireworks massively trigger the noise sensitivity associated with my ASD, I had a firework thrown at me when I was at the cinema as a teenager. So fireworks make me very anxious and the more there are, the more anxious I get.

I was doing okay: I’d done some blog writing, Mum and I had had dinner in front of Legally Blonde (a friend of mine has been trying to get me to watch it for ages, ever since I’d said that I’d never seen it), but then excruciatingly loud fireworks (that we later found out were being let off a few gardens down from ours) started going off. It could’ve been machine gun fire. The sound triggered one of the worst meltdowns I’ve ever had: I was shaking, hyperventilating, sobbing, screaming (apparently I was screaming ‘stop’ over and over but I never really remember meltdowns afterwards), pulling out my hair to the extent that I was drawing blood… I have no idea how long it went on for but it felt like it could’ve been an hour. Eventually it stopped but meltdowns – my meltdowns at least (I don’t want to speak for anyone else’s experience) – often take a while to settle. I’d barely started to relax when a few minutes later, it all stared again and re-triggered the meltdown. Even after they did finally stop, it was still a long time before I was responsive again, able to interact with my surroundings, able to talk again. It was horrific. It was absolutely horrific.

I have no idea how much time that ate up, just that I was absolutely drained afterwards and barely able to sit up on the sofa. We finished the movie (I liked it for the most part but there’s a really problematic scene where one of the lawyers tricks a gay man into outing himself in public, which is just not okay – I get that it was almost twenty years ago but that doesn’t make it comfortable to watch) and headed for bed. The one thing I will say about it being Bonfire Night was that one of my cats, Sooty (pictured below), stayed with me all evening, snuggled up nice and close. I don’t know if she understood my distress or whether she, herself, needed some comfort but it was very nice to have her with me all evening. Nothing really helps with the meltdowns but it did help before when it was the odd bang and after when I was a collapsed on the sofa. She was an excellent little companion.

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Despite being so exhausted by the meltdown, I couldn’t sleep, no matter what I did. Maybe it was adrenaline, maybe it was fight or flight… I don’t know. But I couldn’t fully relax for hours, even with the help of a sleeping pill. I think I eventually went to sleep at some point between two thirty and three.


FRIDAY

I struggled up the next morning and after a while, decided to post about the experience. I’d seen #banthefireworks and similar hashtags trending on Twitter the night before, mainly to do with how traumatising they are for pets and for wildlife. It was, however, the first time I’d seen people with sensory issues and Autism mentioned as well though, which felt like quite a big deal. I’d been too out of it the night before to write anything at all but with my head a little clearer, I thought that maybe it could be a good idea and maybe raise some awareness about what the experience of Bonfire Night (and fireworks in general) is like as an autistic person. So I posted this on Twitter and on my Instagram stories:

I actually got a really lovely response with a handful of likes and kind, supportive comments.

I got up and got myself ready for the day and settled down to do some blog post writing. I was feeling very fragile after the meltdown(s) the night before so I put on one of the movies that I discovered during the first lockdown and ended up watching a lot because it just feels good. It’s called ‘Isn’t It Romantic’ with Rebel Wilson. I’m generally not a rom-com fan and I hadn’t seen Rebel Wilson in a role that didn’t make me cringe so I was initially wary when my friend recommended it but I ended up loving it. It’s just the ultimate feel good movie. So I had that on in the background as I tried to write (my thoughts always feel kind of fuzzy and not quite connected after a meltdown, sometimes for a few hours and sometimes for days – it can get really upsetting if I spend too much time thinking about it; feeling like your brain doesn’t work just feels so horrible and scary).

Mid afternoon, I had a session with my therapist. I haven’t ‘seen’ her for a while so we had quite a bit of catching up to do. We talked in depth about the night before, as I usually need to after an experience like that. I feel pretty lucky that I had a therapy session within less than twenty four hours, even if it was still very raw. But better that than in a week or two. The other main thing we talked about was how I’m struggling more than usual with my OCD: with the new semester of uni and the promotion of ‘Honest,’ it’s been really hard to find the time and emotional energy to keep up with my diary (for those unfamiliar, my OCD manifests as a compulsive need to write everything down. The overwhelming anxiety and pressure to keep up and do well in my Masters and what is effectively my job seems to be the only thing that can overpower my compulsive writing but then the anxiety around that only builds and builds until I feel like I can’t breathe, like my mind is coming apart and I’m no longer able to form coherent thought processes. We spent a while talking about that and about starting to tackle it as an issue, something we haven’t done because the pandemic has had such an impact on my mental health. It was an exhausting session but it was good to see her and hopefully, in therapy at least, I’m moving out of the frozen state I’ve been in since the pandemic hit the UK. I’m reluctant to commit to that as a statement but I’m cautiously optimistic.

I was pretty much done after that; I didn’t have any energy left. I posted a video to remind people about the new single but that was pretty much all I could manage for the rest of the day.

Since I was too tired to do anything, I ended up watching a new film, Inheritance. The trailer had looked good and while it wasn’t the best film ever, I thought the acting – especially the scenes that involved just Lily Collins and Simon Pegg in a room – was really good and I enjoyed the twists and turns. It was very dark though so I can definitely see it appealing to some and really not to others.

While the fireworks weren’t anywhere near as bad as the night before, people were still setting them off throughout the evening, which really heightened my anxiety. I could barely eat; it felt like my throat was closing up and swallowing was actively uncomfortable.

I spent the evening bouncing between trying to write blog posts and trying to write my diary, not achieving much with either. Again, I think I was just too tired. But it was still a bit too early to go to bed and I wanted to try and do something, even if it wasn’t much.

I FaceTimed with one of my parents before going to bed, which was really nice and then, during the call, I got an email saying that I’d got a ticket to Halsey’s upcoming livestream for the launch of her new poetry book, I Would Leave Me If I Could, which was really, really excited. And when I went to bed around eleven, Biden was very close to winning. So that was a good mental state to be going to bed with.


SATURDAY

I struggled up at nine thirty and got straight to work, recording vocals for the reimagination of my song before my session with Richard. That went pretty quickly and smoothly because I was fairly solid in the new melody. I think it’s pretty good, although I was a bit concerned that the rhythm of the melody wasn’t that different from the original. I didn’t have the time to rework it so I thought I’d take that to class and ask for advice, both in terms of whether they thought it was a problem and how I should go about changing it if it was.

That done, I had a shower and breakfast, published my blog post about going back to the gym (pre this new lockdown), and then logged into Zoom for my session with Richard. We spent the next three hours working on the reimagination of my song and of the cover song. I found it quite frustrating since it was mainly arrangement and production based, so all I could do was offer direction and suggestions but Richard had to do all of the physical work, considering the Logic project was on his screen. This is one of the things I find hardest about collaboration via programs like Zoom: you can’t just take over from one another, swap chairs or instruments, or even point to things on the screen. Sometimes I end up finding it hard to engage and sometimes I just end up wanting to scream because I feel so limited. Most of the time it’s fine and I’ll gratefully accept the fact that we can work long distance at all but every now and then, the frustration just gets too much.

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After hanging up, I put Friends on for background noise and spent a few hours working on upcoming blog posts.

I wasn’t refreshing the news as obsessively anymore so I didn’t discover it for myself. I got a text from Richard at 4:28pm with a screenshot of the BBC News announcement. I actually shrieked and shouted to Mum to tell her. I was positively giddy with relief: I laughed hysterically and then I just started crying because I was just so overwhelmed with so many emotions. It was like I could breathe again. And considering that’s how I felt when it isn’t my country or government, I can only imagine how everyone in America – those who had worked so hard to get Trump out and Biden in – were feeling.

The majority of people that I was seeing on social media were hysterical with joy and it being such a historic moment, I felt that I really wanted to add my own to mark the occasion…

We were just finishing dinner when the fireworks started going off. They weren’t bad enough to trigger a meltdown but they did make me anxious, cause me to flinch and lose my train of thought. I was going to be very pleased when those few nights of fireworks were over.

We had a quiet evening of TV (me and Mum are currently rewatching Hustle – it’s easy to watch but still such a good show) and I tried to do some gentle work on my Masters essay but I ended up in a state about all the musical theory language that I was supposed to be using but didn’t understand, being a self taught musician rather than having had lots of lessons or doing grades. So that was very stressful and I got very upset so I emailed my tutors to ask for some guidance.

I was still buzzing about the election news but it had been somewhat dampened (temporarily) by my uni anxiety so I went to bed just feeling like a complete mess. I was exhausted and overwhelmed and anxious and it was all just too much. By that point, I needed the emotional fresh start a new day would give me.


SUNDAY

It wasn’t easy but I managed to wake up around eight thirty. I got distracted from getting up when I checked my social media though, looking through all of the posts about Biden getting in. There were a few negative posts but on the whole, my feed was mostly filled with positive ones, which was a nice way to start the day. Obviously our social media isn’t an objective view of any subject so I wasn’t going to base my knowledge of the election outcome on the reactions I was seeing but seeing so much positivity and joy on my timeline was a real lift in a very difficult week.

Eventually I tore myself away, had a shower and breakfast, and got down to work. I spent the morning working on blog posts and doing some Christmas present planning and shopping. And then I dedicated the afternoon to preparing for the conference. It’s a conference about University and the Covid-19 pandemic and I’m on a panel discussing autistic students and coping with change. So I wrote down all my thoughts, organised and input them into the powerpoint we would be displaying. It took a couple of hours but I was pleased with the work I’d done. Now I just have to pull together my notes for when it’s my turn to speak but I didn’t want to do that until we’d all met again and signed off on the powerpoint as a group.

I had some chill time before one of my other parents arrived for our weekly evening together (she’s in our bubble and it seems that bubbles – those that bring a household and a single person together anyway – are still permitted during this lockdown). We’d decided, given that we were already in a bubble and none of us do anything out but the essentials, that we felt safe to continuing seeing each other.

We had a really good evening. She’s a music teacher (or at least that’s one of her hats) and has been for decades so she was able to help me out with my essay: we went through the harmonic, melodic, and rhythmic elements of every section of the song and it was kind of hilarious how consistent I’d been without being aware of it: almost every element built on the idea of tension and release, except the release never comes. Non-diatonic chords, uncommon intervals, irregular time signatures, syncopation for days… The song had been an experiment in the weird and it was certainly that.

We had dinner with a movie (we missed the new episode of His Dark Materials because I got the time wrong – me and Mum made a note to watch it the next day) and while my parents were content to relax with the rest of the movie, I went back to blog writing. My brain struggles to sit still, to do one thing without getting distracted or bored. So I kept writing, with Sooty curled up between my knees. It seems to be her new favourite place.

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Once it was just me and Mum again, we took our time winding down and then headed for bed. I checked my phone one last time and saw that, as promised if Biden won the election, Kalie Shorr had released a worktape of one of her unreleased songs, ‘Strawberry Blonde.’ It’s such a great song. Her lyric writing especially just blows my mind:

“…Sometimes I still get wasted

To stop thinking ‘bout the time I wasted

I started taking long walks again

And I started talking to God again

You’d hardly recognise me with my rose-coloured glasses gone

You might find it surprising I stopped taking shit from anyone

I got a new tattoo so you don’t know what I look like when my clothes are off

And I went strawberry blonde…”

I learn so much from her songs and I’d love to have the confidence she has in her writing style, in herself as an artist and as a person it seems. She is one of the people I want to write with most; I feel like it would just be so much fun and I’d learn so much. Plus I think we could write one badass song. She’s such an inspiration to me and has been ever since I met her and started following her career in 2016. I don’t know if she knows what an impact – what a positive impact – she’s had on my life.

My brain was going off like fireworks (ironic, I know, but it’s the only metaphor I’ve found that fits) after hearing that song, lyrics bursting into life behind my eyes, which of course I had to write down so as not to forget them. My brain is often at its most active and creative at night. So it took me a long time to get to sleep.


So it was a hell of a week. There was good, bad, really good, and really bad. I can’t say whether it was the week I expected or not because I had no idea what the week was going to look like, mostly due to the US election. Most of all it was exhausting. The new week felt daunting, going in so depleted, but it’s not the first time and it won’t be the last.

I hope this was interesting; I hope you enjoyed it. And I’ll see you in the next post.

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.

ME/CFS Research: Photo Diary (Pre Lockdown and During Lockdown)

Not long ago, I volunteered for a research study into ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and part of it involved keeping a photo diary as a visual representation for how my life is affected by my CFS. Obviously my life before the pandemic and my life now are quite different and so the researcher asked me to include pre-pandemic photos as well, to ensure that both experiences were recorded for the study. The collection of photos (and descriptions) I sent her was very long but I thought I’d do an abridged version to post here because it was a really interesting exercise.

(It’s worth noting that this was put together before I started back at university, hence why there aren’t any current references to classes or assignments.)


PRE-LOCKDOWN

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1. During my BA, I frequently took naps in quiet corners of my university between classes and then at my best friend’s flat when he moved onto the same street as the university. I found the commuting exhausting and the classes were long (some of them three hours) and took a lot of concentration. By the end of the semester, I was often really struggling to wake up to go back for the next class. A few times, I slept straight through both my alarm and my class. Fortunately that only happened a couple of times!

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2. I’m currently doing a Masters Degree in songwriting part time and pre-lockdown, I’d go up to London usually once or twice a week for lectures, workshops, and cowriting sessions. This is an example of one of the assignments we had during the first module, which was called Creative Process.

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3. Because living alone would be too much for me – I wouldn’t have the energy to look after myself, let alone do anything more – I commute to university (pre-pandemic anyway), involving lots of underground travel and multiple train journeys a week, something that I find exhausting. This is one of the reasons I chose to do my Masters part time because it reduced the amount of travelling and therefore allowed me to spend more energy on the course/work rather than on travelling.

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4. At the end of any day that involves hard work or anxiety, I’m utterly exhausted and usually end up horizontal on the sofa or going to bed as soon as I get home from wherever I am. In this instance, I’d just done the assessment presentation for the first module of my Masters – which I’d been incredibly anxious about – and was completely exhausted. Plus the day had involved practicing it in the morning as well as travelling to London and back. I was so tired that I could barely stay awake long enough to eat dinner before going to bed.

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5. I spent most of my days out of uni on the sofa, working on music, my mental health blog, or catching up with my diary, a favourite movie or TV show on in the background because I work better with background noise. I’m usually joined by a cat or two.

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6. As a singersongwriter, I try to perform as often as I can, both in terms of opportunity and having the energy (I once played three gigs in three days after which I could barely function for over a week because I’d just used up so much physical, mental, and emotional energy). That’s not a common problem – managing my energy around the amount of gigs – as there aren’t a huge number of opportunities with so many aspiring singers in the two cities I perform in, London and Brighton. I love performing. It’s the place I most feel myself, especially if I’m singing songs that I’ve written. I don’t feel any fatigue while I’m performing – I’m feeling so much joy that it’s like I’m flying – and I don’t feel any fatigue until the adrenaline wears off, anywhere between thirty minutes and several hours later.

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7. Since getting an Autism Spectrum Disorder diagnosis, I’ve been able to get access to disabled seats at concerts, which does (in certain ways) improve my concert experience. It can be more stressful and it can make no difference at all but at the very least, it makes me feel better. I am in the disabled section and therefore no one can judge me or think that I don’t deserve to be at the show because I’m not dancing around, not ‘enjoying myself enough.’ That makes me feel more able to sit as I need to, which does make the concert experience easier on me and my body. Having said that, I’m not always so sensible out of sheer enthusiasm.

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8. Before the pandemic, my best friend, Richard, and I had almost weekly writing and production sessions. My current EP was made almost entirely by the two of us in various rooms in the various places we’ve lived in over the last few years. These sessions are so fun and invigorating and even when it’s a struggle to find the right words or get the production to sound exactly how I want it to sound, it always feels right. I often feel very drained afterwards because it involves a lot of concentration and communication and we often work for four hours or more at a time. We have had sessions that last all day where I’m barely coherent by the end.

SINCE LOCKDOWN

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1. We have five cats in the house and I’ve been spending a lot of time with them. They’ve always been really good for my anxiety – probably because they are so mindful and live so fully in the moment – but they’ve been an extra comfort during these stressful times. I always try to get a good cuddle in the evenings since I get particularly anxious before bed because I’ve been sleeping so badly and having lots of nightmares during lockdown.

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2. I generally drink at least two Red Bulls a day to keep myself awake and somewhat alert, although I don’t think they work as well as they used to. I’m sleepy all the time, but whether that’s from the CFS or the side effects of my anti-depressants or both, I don’t know. I hate feeling like I need to drink it and I worry about the effects on my health but it’s currently the only way I can stay awake for at least most of the day. My Mum and I are investigating other options, or we were until the pandemic brought everything to halt. We haven’t given up though.

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3. This is my usual day-to-day view at the moment. I have a desk designed for bed or sofa use so that I can work from the sofa, which is more comfortable for me than working at my desk since I’ve been have problems with pain during lockdown (I’ve been referred to various hospital departments but I’m still waiting for the appointments). I’m usually working on my laptop – on my mental health blog, on my diary, on music stuff, etc – and there’s usually a cat draped over me.

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4. I usually have the TV on in the background because I seem to be more productive with familiar background noise, like a familiar TV show or movie. But I’ve also been watching new things during lockdown, both to escape from all of the stress around the pandemic but also as inspiration for my music as not much is happening in my personal life to draw from for songs. This is the very last episode of Agents of Shield, my favourite TV show and I was hugely sad to see it end although the ending was as perfect as the end of something you love can be.

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5. Since face-to-face writing sessions aren’t safe at this current time, I’ve been doing all of my writing sessions via Zoom. I’m currently doing about two a week, mostly with my writing partner, Richard. We alternate sessions: one on my songs and then one on his songs and so on. It’s harder work and not quite as fun or productive as a normal pre-pandemic session (who would’ve thought that not being able to point at something would trip up the creative process?) but it allows us to keep creating, which I’m grateful for. I’m always careful not to plan anything too difficult afterwards because these sessions are really draining and after about four hours, my ability to concentrate starts to fade.

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6. I’ve been playing a lot of piano during lockdown. It distracts me from all that’s going on, I want to improve my skills, and I just genuinely love playing, especially in the lower octaves. I find them very soothing. I can play for hours without noticing the passing time; it’s lovely. Playing and singing for hours is, of course, tiring but it’s worth it because I get so much enjoyment out of it.

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7. Because of my fatigue, I spend a lot of time on the sofa, which can get boring and frustrating, but it’s not so bad when I have my Mum (she’s self-employed, primarily working from home – especially now) and the cats around.

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8. Most days consist of sitting on the sofa, working on my laptop. I’m writing a lot of posts for my mental health blog at the moment, preparing for when university starts again and I have less time to write. My Mum often does emails similarly, keeping me company even if we aren’t actively engaging with each other.


So that’s my condensed photo diary for the study. There are, of course, other areas of my life and other areas of my life that my CFS affects, like food and exercise but I don’t have any photos relating to those. For example, swimming is my main form of exercise but pre-pandemic I wouldn’t take my phone further than the locker room and since lockdown began, I’ve been struggling to find a way to swim that feels safe. I may have found one but I’m trying not to get too excited: I’ve missed it so much and I’m so desperate to get back to it, for my physical health, my mental health, and my relationship with my body. I was also reluctant to include other people; my exception was Richard because our work and social media presence are so intertwined. So there are obviously gaps but I tried my best to give an overview. Hopefully it will be a useful contribution to the research.