A Week In My Life (December 2020)

Since my last week-in-my-life post didn’t include any time ‘at’ university, I thought I’d write another one this semester, one that included uni time and all that that entails.

After three really bad mental health days, I was a bit wary about the week ahead – starting it feeling so depleted. It ended up being a very mixed week, as they’ve all been recently. Maybe it’s an end of term thing: I start off strong but then I hit a wall somewhere in the middle and it doesn’t always take much. I’ve worked hard this semester so hopefully I’ll be able to finish all of my assessment stuff fairly quickly – it’s mostly just polishing now – and get some proper holiday time. Last year, I had to work every day of the Christmas break, only taking Christmas Day off. So some time off would be really nice.

The week in this post began on Monday 30th November and ended on Sunday 6th December 2020.


MONDAY

I slept badly so I took my time getting up and having a shower. I had some breakfast (and ALL of my pills – there’s so many at the moment, what with my normal medication, extra supplements, and some antibiotics) and then I got myself sorted for my session with Richard.

We spent about three hours on the call, working on the production for a new song I’d written, and then just chilling out together, chatting about our uni work, the various projects we’re working on, the tv shows we’re watching, and so on… We’re always texting and we have our Zoom sessions but we haven’t hung out together in months and I really miss that.

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When we finally hung up, I was exhausted and what started as an episode of The Split while I recovered turned into finishing the second series. It was really, really good – even better than the first series. Nicola Walker and Stephen Mangan were particularly fantastic. I love Nicola Walker; she was incredible in Spooks, Scott & Bailey, River, and now in Unforgotten and The Split. Her performances throughout this second series have been breathtaking and the ending had me in floods of tears. She blows me away every time.

I spent what was left of the afternoon and early evening working on my assessment essay. Then Mum and I had dinner together before starting a rewatch of Unforgotten (yes, we’re on a bit of a Nicola Walker kick at the moment), while I did some diary writing. I’m so far behind, what with everything I’ve been dealing with healthwise and doing for uni. My anxiety over it is so high but so is my anxiety over my uni work so the two are constantly pushing against one another. I never have any respite from it and it’s exhausting.

I managed to go to bed reasonably early, which was an achievement, especially since I had to get up early the next morning for uni.


TUESDAY

Again, I slept restlessly but with disturbing dreams that I couldn’t quite remember when I woke up; it just left me feeling kind of uneasy for most of the day, which wasn’t fun. I swear, I’ve had as many nightmares or disturbing dreams since the pandemic began than in my whole life up to that point. It’s horrible; I really feel for anyone who deals with this generally, independent of the pandemic.

I got up, got showered and dressed, had breakfast and pills before logging into my first class of the day. I could only stay an hour of the two (pre-arranged with my tutor) but we spent that hour identifying and discussing different kinds of hooks and how they’re used in songs. Then I had to sign off for a call about my rheumatology referral. It seriously cannot come quickly enough; the pain in my arm, hand, back and legs is only getting worse as time passes.

Before I got down to work, I checked my Spotify stats and saw that the Honest EP has surpassed 30,000 streams. It’s a weird feeling, knowing that so many people have heard these songs. A good feeling, but a weird feeling. I can’t really describe it.

I spent several hours working on my essay, all but finishing the first draft. So that was a good bit of work done – more than I can usually manage between classes. I had some lunch, some time to dedicate to my diary writing, and then I was signing back into class.

The afternoon’s workshop was a productive one. We got through a lot of songs and we had some really good discussions, despite only having an hour. Everyone was really lovely about my song, which meant a lot since it was such a personal one. I also had questions about the grading criteria and learning outcomes because I find the language very unclear and that lead to a good conversation about the assessment as well as inclusivity and accessibility of the course. So it felt like a really positive class, in all sorts of ways.

When my class finished, my Mum and I FaceTimed with my Granny for her birthday and I also got to see my aunt (they’re in a bubble together), which was really lovely. I don’t think I’ve seen either of them in person since Christmas, which has been hard, even knowing that it’s the right, responsible thing to do. It a weird world – a difficult world – when the best way to love someone is to stay away from them.

I also FaceTimed with one of my parents who’d had a particularly rough day. So it was a very social day! It was good to do but I definitely felt drained afterwards.

I was having some downtime, doing some blog writing and watching TV, when another of my other parents called me and told me to change channel to a very cute programme about puppies. It was indeed very cute and it did make me wish for a puppy again, not that we intend to get one in the foreseeable future – we don’t have enough time to properly devote to one so it wouldn’t be fair. But I’m always up for any puppy time I can get.

But the best bit was how one of my cats, Mouse, reacted to it. She was fascinated by the puppies, even patting the screen, trying to touch them. It was utterly adorable. She sat patiently through the advert break and was just as absorbed by the puppies when they returned to the screen. She watched intently for the rest of the programme and then, when the credits rolled, she got up and walked away. It was the funniest thing.

So that was very adorable.

Mum and I had dinner with another few episodes of Unforgotten and I finished my essay. Well, the first draft anyway. It needed a read through and a tidy up before I sent it off but what I’d wanted done for my tutorial session was essentially done. A productive day’s work and in bed before eleven: not bad at all.


WEDNESDAY

So Lockdown 2.0 has ended, not that it felt like much of a lockdown. If you’re going to call it a lockdown, then you have to do what you did in the first lockdown and shut everything down. Otherwise it’s not going to make a difference, people are going to have even less faith in it as a safety measure, and they’ll flaunt the rules because they don’t think it matters. It’s been driving me up the wall. I’m so frustrated: with the government, with the people ignoring the rules (and boasting about it), anyone who is putting casual convenience over the safety of others… Yes, that’s a generalised statement. I’m aware that there are important and necessary reasons to go out but there just seem to be so many people who just don’t care that we’re still in a pandemic and I find that incredibly distressing.

I woke up at eight and intended to get up but then suddenly it was quarter past nine so I must’ve accidentally gone back to sleep. I did manage to get up then and headed straight for my desk to record the vocals for the song I’d been working on with Richard. Even though I love it, for some reason, I find it really hard to motivate myself to start recording so it seems that the easiest way is to just get up and do it before I can get into a procrastinating mindset.

That done, I had breakfast and a shower, leaving me with just enough time to tidy up my essay and send it to my tutor before heading out to have a blood test. I had one a month or so ago and it showed dangerously low Vitamin D levels so I’ve been on a high dose Vitamin D supplement to try and build them up again. This blood test should tell us whether they’ve helped and what the next steps are.

It was almost dark by the time we got home so we settled down in the living room, lit a fire (one of my favourite things about this time of year and about this house – the fireplace) and continued watching Unforgotten. I also kept working on my Lockdown 2.0 blog post. I’d been keeping the list updated throughout the lockdown so it was just a case of tidying it up, adding all the right links, and writing an introduction and conclusion.

I had to stop in the middle to sign in to my tutorial. I had a really good session with my tutor. He was complimentary about what I’d already done and had some really good feedback so I feel pretty good about my next steps. I know what I need to do and now I just need to do it. Then I get one more tutorial before the holidays for any final feedback or guidance. The deadline is in sight, which is more than a bit scary. I just really, really want to do well.

I was exhausted afterwards but I still managed to finish and post the Lockdown 2.0 blog. So I guess it was a pretty productive day.

That done, I had a quick scroll through social media and saw that people had started to post their Spotify stats of the year, both as listeners and as artists. I always find this difficult, regardless of any rational talking to I give myself, regardless of whatever I’ve personally gone through or achieved that year; it just taps into my lifelong insecurity of not doing well enough, not being ‘good enough.’ So it’s not easy. This year should’ve been different, with four of the five tracks from my EP being released since January, but Spotify doesn’t count anything after 31st October and with ‘Honest‘ coming out on 30th October, only one day of its streams were counted. So my most successful song wasn’t a part of my Spotify Wrapped, making it completely inaccurate. So I haven’t shared it – haven’t wanted to – and I feel a little bit robbed of that. I have included the percentage increases here but in reality, they’re a good bit higher since ‘Honest’ did so well.

Hopefully next year, or whenever it is that I release more music, the figures will be more accurate and I’ll feel confident in sharing them. This ‘comparison anxiety,’ as my friend called it, was something I really wanted to work on in therapy this year but even when I’ve felt able to ‘go’ to therapy, it’s been difficult to get much further than damage control around the pandemic. That’s been really difficult – a real frustration – this year. I’ve just felt completely stuck at therapy: while I want to move forward, I’ve only felt able to maintain the fragile balancing act I’ve managed to create. And I haven’t even been able to do that a lot of the time.

Early evening, my Mum and I FaceTimed with my Granny before having fish and chips with one of my other parents. We watched the new episode of His Dark Materials (Series 2 Episode 4) and it was so good. Oh my god, that cliffhanger!

I was just getting ready for bed when I felt the pain in my back. It had been aching all afternoon but that’s not unusual right now but then it started to get worse, sharper and higher. It came on so suddenly that I couldn’t get from the bathroom to the bedroom without Mum’s help and then, when I collapsed on the bed, I couldn’t move because the pain was so bad. It seems to come in waves: there’s the pain and then it surges like a series of electric shocks before finally (FINALLY) receding back to the original pain level. And I never know how long it will go on for; sometimes painkillers seem to make a difference  and sometimes it seems to go on for ages regardless. I’m not entirely sure how long this one went on for but it was at least half an hour. And then it always takes quite a long time for me to get my body to relax afterwards, my muscles having been so tense while the electric shock pain was so bad. So even though I was exhausted, it took me a long time to get comfortable and drift off.


THURSDAY

It took me a long time to get up because I was so stiff and sore. The rheumatology appointment can’t come soon enough. I struggled through breakfast and a shower and then had a Zoom production session with Richard, continuing to work on the song we’d started on the Monday. Considering how out of our normal styles the song was, I think we did a good job, especially for a demo and I’m definitely interested to hear what my class have to say when they hear it.

We also had some chill time, just chatting and hanging out, almost like we would if we were actually together, which was really nice. We’re coping with remote sessions but I cannot wait to hang out again properly, have face-to-face writing sessions, and actually do things together. Or not do things together but do that together in the same room, if you know what I mean.

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When we finished, I did a couple of FaceTime calls with family and then collapsed on the sofa. I was completely exhausted. Me and Mum watched the last episode of Unforgotten Series 3 and oh my god, it gets me every time (if you know, you know – I’m not going to spoil it but the acting is incredible). Nicola Walker does not get the credit she deserves, although from what I’ve read in interviews, she seems to be pretty happy just buckling down on great projects and not doing the whole spotlight thing. (I’m so annoyed with myself that I missed seeing her in The Curious Incident of the Dog in the Night-Time – I would love to see her on stage and it’s such a great book.)

Mum and I were having a relatively chilled evening until I asked her about her call with my doctor. There had been multiple things to update her on and ask about but some of the advice she’d given was just really triggering and upsetting. I will talk about it at some point because I think it’s an important thing to have conversations about but it’s not something I’m personally ready to talk about yet. But it really upset me and just killed the warm, cozy mood of the evening.

And then, to make matters worse, Mouse (the cat) brought in a dead mouse, which is something that almost always sets off a meltdown (fortunately Mum understands this and is okay with dealing with it while I do my best to avoid said meltdown). I managed to remove myself quickly enough that I didn’t have one but it was just the final straw on what I could handle that evening so even though it was still quite early, I went to bed. It was all just too much.


FRIDAY

I slept for about twelve hours but I still woke up feeling exhausted, depressed, and miserable. I feel like I spent most of the first lockdown working really hard to get my mental health into some sort of box so I felt like I wasn’t constantly overwhelmed but most days, it still feels like I’m walking on a tightrope and it takes so little to knock me off and back into that suffocating depression. And that’s exactly what the night before did.

I really struggled all day. I just felt completely unmotivated and so, so tired. I was also having to deal with side effects of my antibiotics – they left me with a disgusting taste in my mouth all the time – which was just an extra strain. I only had one day left so I tried to focus on that but it just felt so much harder than it would’ve had I not already been feeling so awful. I did manage to finish and post the blog post about What’s Next for the Honest EP so that was good to do and helpful for my mental state – ticking stuff off my list always gives me at least a bit of a boost.

The good news of the day was that Kalie Shorr had re-released (I guess) her debut album, Open Book (which I wrote about here), but as Open Book: Unabridged, the original album plus four more songs. ‘My Voice’ and ‘Lying To Myself’ had already been released as singles and she’d played ‘Eighteen’ during her livestream concert but ‘Out Of It’ was completely new, which was really cool. They’re all stunning songs and all in their own way. ‘My Voice’ is empowering and unapologetic, as well as a very effective middle finger at the Country labels in Nashville. ‘Lying To Myself’ paints an aching authentic picture of insecurity after a break up with incredible lyrics like, “I picked out all my favourite things you said, then like a delusional architect, I built you up like a house of cards” and “You liked it up on that pedestal ’cause damn, you looked incredible, but coming down’s inevitable.” ‘Eighteen’ is a brutally honest, heartbreaking song about looking back at a relationship that really wasn’t okay, where you were all in but you were only ever treated badly. And ‘Out Of It’ is similar to a previous Kalie song, ‘Awake,’ but this time, she’s saying ‘no’ and isn’t going to get pulled into the bullshit; this time, she’s cutting the cord between herself and the other person. And because I’m a lyric nerd, here is my favourite (or one of my favourites) from each song:

My Voice: “Too rock for country, too country for punk / But who said I had to pick either one / Tattoos at the Opry / I could cover em up but it’s not me”

Lying To Myself: “I’m a little out of touch with reality, it’s never been that nice to me / I like the pictures I paint the best”

Eighteen: “I see you out with younger versions of me / While I’m trying to find who I used to be / I’m terrified that you and I will always be chasing eighteen”

Out Of It: “Your mom and dad put you through hell / You tell your secrets ’til you scare yourself / It’s a big dramatic entrance then you leave / And now I’m the girl I said I’d never be”

Late afternoon saw me dragging myself through some preparation for a mental health assessment that I have coming up, which was another thing I needed to do. But I was so tired that it took forever and I spent a lot of the time it took with my head on my arms, just trying to think. It was just a really bad mental health day. There was no way around it so I just tried to get through it. I was too tired to do anything really but I still tried to write my blog post about the UniversitiesUK Conference. I find it so hard to just do nothing; it causes me a lot of anxiety so even when I’m exhausted, I’m still desperately trying to do something.

By necessity, it was a quiet evening and I went to bed early, all too aware of how soon I had to wake up again to watch Maren Morris’ livestream concert.


SATURDAY

After MANY alarms, I struggled up at 2am to watch Maren Morris’ livestream concert. It felt very strange to not be a part of the crowd, singing (or screaming) along with her but it was so good to see her perform and hear her gorgeous voice again. It was very comforting, like a reminder that some things don’t change. The world might’ve turned upside down but Maren Morris is still Maren Morris, an exceptional songwriter, singer, and performer. So I was really grateful that she and her team put together this show for us.

I didn’t get back to sleep until about five and couldn’t be roused for anything. I eventually woke up at twelve and then I felt so tired and heavy that I could barely get out of bed. I spent several hours unable to do anything but lie on the sofa and watch TV. Disrupting my sleep patterns always throws me for six and with the depressive feelings still very overwhelming, I was really struggling.

Eventually I managed a shower, which completely exhausted me. It also makes me feel sick and dizzy to stand up for the amount of time it takes to sort the shower, have the shower, and then get dried and dressed. One more thing on the list of things being investigated.

Back in the living room, I put on Lucifer and attempted to do something productive. Mostly I ended up jumping between this and my diary, writing a few sentences here and there before switching back, just too tired to think enough to write anything decent. So that was frustrating, plus I had the nerve pain in my leg again – not the electric shock version but the bit that always comes before that (even if it doesn’t turn into said electric shock feeling) where it aches deeper than feels physically possible. So that didn’t help.

Mum and I had an early dinner and then she went for a swim. I really wanted to go and felt like I should – I’d been looking forward to it ever since the pool closed for lockdown – but I just had absolutely no energy. So she went and hopefully I’ll feel able to go next time. I got some good writing done though, so at least the time didn’t go to waste.

Having gotten up so late, I ended up going to bed too late, which was a bit of a pain. My sleep schedule is so easily knocked off course and then so difficult to correct. It was worth it though. Seeing Maren Morris perform is always good for my soul.


SUNDAY

I slept restlessly and struggled up around ten. I still felt incredibly depressed and it took a huge amount of effort to just get out of bed, into the shower, and up into the living room. I had a quiet day, not that that I think I could’ve managed anything else. I managed to finish and post my blog post about speaking at the UniversitiesUK Conference. I also finished all the paperwork for the upcoming mental health assessment and worked on the interview questions my university had sent me about doing the conference (that interview has since been posted). So, considering how awful I felt, I did manage to get something out of the way and check some things off the ongoing list, which – as I think I’ve said – at least helps me to keep my mental state from sinking lower. Having said that, I don’t want to promote the idea that being constantly productive is essential for your mental health; I’ve just found that, if I can tick something off of my to do list, even if it’s something tiny, then that can help me to keep moving forward, help me not to get stuck in my depression. It doesn’t always work; sometimes I just have to surrender to a bad day and hope that the next one will be better. But trying , even if not succeeding, does seem to do something positive.

In the evening, one of my parents came over and the three of us had a chilled evening, eating dinner in front of the fire and continuing our rewatch of Lucifer. It was gentle and undemanding and I did feel better for it. I often simplify my mood into two levels: surface and deep. And in this case, even though my deep mood was still very depressed and twisted up, my surface mood was a bit lighter. Calling it a surface mood doesn’t, to me at least, make it any less important than the deeper mood; it just means that it’s the mood that deals with the day to day stuff while the deeper mood is the one that you carry inside you and the one that sits with all the big, important stuff in your head and in your life. I guess, I see this mood as the one that’s so intricately intertwined with a person’s overall mental health. For example, in the previous few days, I was depressed on both levels (I’m not sure how good a job I’ve done of illustrating that but it’s the truth) but after the Sunday evening, my surface mood started to lift out of that depressed place. My deeper mood was still there though (and still is as I post this). But the lightening of my surface mood did make it a bit easier to face Monday and the coming week.

I tried to go to bed early but as usual, failed. I swear, I’m desperate to sleep all day and then, at about seven o’clock in the evening, my brain snaps on and starts firing wildly, almost too fast for me to keep up with my own thoughts. It’s so frustrating. It’s almost as if my brain has got day and night confused.


So there you have it: another week completely different from the last. I think I’m grateful for that – it must be better than feeling like you’re stuck in a hamster wheel surely – but it’s not without it’s difficulties. When planning is the thing that makes life easier to bear, it can be hard when each new week seems to bring something unexpected.

You guys seem to like these posts so I’ll be sure to do another one soon but probably not until the new year. Touch wood, I can get all of my coursework done in the next ten days and then I can have some time off (although I’m not exactly sure whether it will feel like time off – my brain already has an anxiety fuelled to-do list waiting for me – but I’m going to try my best.) Anyway, I hope you enjoyed reading this and I hope to 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.

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.