Posted on March 27, 2021
This post feels like it has been a long time coming but I didn’t want to post anything before I had more to say than ‘I’m in pain’ and, at long last, I do. But first, context: I started struggling with chronic pain about halfway through the first UK lockdown, early last year, and it’s been really, really tough. But recently I finally got some answers and started to get some support. And while it’s not a journey that’s over – if that’s even a possibility – I’ve come far enough that I feel like I can talk about it with a certain level of knowledge and emotional distance. So, here we go…
It started out as sporadic pain in my left hand and arm. I’ve experienced this on and off before, due to my extensive writing and my compulsive hair pulling, so I wasn’t overly concerned. Waking up to my hand being numb and tingly was unusual and a bit unnerving but given how much I was writing and how much hair I was pulling out – both of them being outlets for stress – during that first lockdown, I figured that I was just straining that arm a bit more than usual and that it would probably go back to normal as my anxiety decreased.
But then I started developing an ache in my left leg. I don’t really know how to explain it but it felt like it was coming from somewhere deeper than the centre of my leg, deeper than was physically possible. And then what started out as a painful but sporadic ache turned into attacks of debilitating pain, like electric shocks shooting through my leg at random. They were (and are when they still happen) excruciating and had me collapsing on the floor every time, sobbing or even screaming. There were a few so bad that I ended up hyperventilating so hard and long that I nearly passed out. And if that wasn’t bad enough, both the ache and random electric shock attacks spread up to my lower back. None of the common painkillers did anything and I was living in constant fear of the pain hitting me with no warning.
Eventually I was prescribed painkillers but I could only take them for a few days at a time to avoid their addictive nature. They actually – FINALLY – helped; it was such a relief. But the days in between were miserable and the painkillers I was taking in between was barely making a dent. I was also referred to Rheumatology at the hospital.
That was in May (of 2020) and I had to wait until December for an appointment. While, objectively, I can completely understand that, given how overworked hospitals are due to the pandemic, the waiting was also horrendous: I was in constant pain and desperate for help. It was hard to be patient, especially when it was affecting my education because the pain was so bad that I could barely play any of my instruments. It was a really hard time, and that was without all of the COVID-19 and other life stuff.
Eventually the appointment arrived. We didn’t learn much but it got things moving. The hypermobility diagnosis was confirmed and the possible diagnosis of Fibromyalgia was dismissed. I was referred to various departments, including Occupational Therapy, Hydrotherapy (although the consultant wasn’t sure when it would be available due to the pandemic), and, after discussing multiple different medications (many of which I’ve already taken and had negative reactions to), Pain Management. The consultant recommended I have an ECG every five years or so as heart problems can occur with connective tissue disorders and booked my first one for me, as well as an MRI, just to double check my back. She said we’d have another appointment in three months, after the ECG and MRI (it’s been more than three months at this point but I’m hopeful it will be soon since I’m still in a lot of pain).
After the wait for that appointment, I was expecting to wait for ages but we received a call about the MRI less than a week later. The woman who arranged it for us was really thorough and really aware of what might be helpful for me as an autistic individual, suggesting and putting in place so many things to reduce any of my anxiety; for example, I could have Mum in the room with me, I could play music, I could hear the sounds the MRI made before getting in it, she suggested taking Diazepam first, and so on. So that was really helpful. Surprising (I don’t think that’s ever happened before an appointment or procedure before) but very helpful.
The MRI itself was actually a really interesting experience. It was completely manageable and I actually found it quite soothing in a weird way. And, of course, my musician brain couldn’t help but wish I could sample the different sounds the MRI made to use in various tracks. It was over pretty quickly and the whole process was super efficient. I really want to see the images; I don’t know if she’ll bring it up but I’m gonna ask the consultant if I can see them at the next appointment. I’m weirdly intrigued. I mean, I’ve always been kind of fascinated by how my body works specifically (seeing my brainwaves was super cool, for example, and one day I’d love to see images of my brain) so I’m just really curious about what my spine looks like. Like every other spine, I’m sure, but I’m still curious.
(Throughout this time I had been swimming where possible – according to what felt safe and as lockdown allowed – and I’d started incorporating the basic hydrotherapy exercises that the hypermobility specialist had recommended.)
I was prescribed a new daily pain medication but I didn’t really feel like it helped (and I’m still not convinced that it’s actually doing anything helpful). The only thing that helped – and still the only thing that helps is the painkiller that I can only take for a few days at a time; it’s the only thing that has consistently given me pain free periods of time. But, as I said, I can only take it for a few days at a time and the other days are pretty awful.
Around New Year (2020-21), I noticed that the pain was spreading and by the end of January 2021, I was struggling with pain from my toes all the way up to my neck. I rarely experienced pain in my whole body all at once but it had reached a point where there was practically no area of my body that didn’t experience this specific type of pain and often for extended periods of time. My hands, arms, lower back, and lower legs were the worst.
I began Occupational Therapy in February for the pain in my hands. The therapist gave me compression gloves (I have tiny, skinny hands and so they turned out to be too big and I had to buy a smaller pair) and a series of ‘gentle’ exercises that would supposedly allow me to control the hyperextension in my fingers. Right from the start they were painful and I had to drop one of them straight away; it just hurt too much. But I worked hard at the others, whilst simultaneously trying not to work too hard and accidentally regress.
The therapist also discovered that the Pain Management referral hadn’t gone through and put a rush on it – apparently, because the pain is directly affecting my education, I should move me up the waiting list more quickly than if I wasn’t currently doing my Masters. So I guess that’s good news. Hopefully it makes up for the time lost with the referral not going through. She also had some suggestions around swimming during lockdowns, which unfortunately didn’t come to anything but it gave me hope and it was something to work on. That was better than just waiting.
In the following OT session, we talked about the pain caused by the exercises and she reduced them to every other day, which has been better, but I’m still in pretty much constant pain to some degree. But she was pleased with the progress I’d made. Unfortunately though, she thinks I’m probably in the group of people that take the longest to see real change. That’s not massively surprising to me – I’ve been in similar positions before – but it’s still frustrating. Like, out of all of this stuff, couldn’t one thing not be super hard? Couldn’t one thing have the best possible outcome? Anyway. It’s pointless to speculate about that stuff; it’s not like I can change it.
I’d been doing some research on hypermobility but as far as I can tell, it’s a symptom rather than a condition or disorder, like Joint Hypermobility Syndrome or Hypermobile Ehlers-Danlos Syndrome. And since only ‘hypermobility’ had been mentioned up to that point, I asked what my actual diagnosis was and after some conferring between the various people involved, they agrred on a Hypermobile Ehlers-Danlos Syndrome, which explains both the chronic pain and the chronic fatigue (I don’t know what this means for the Chronic Fatigue Syndrome diagnosis – at some point, we’re all going to have to sit down and work out which diagnoses are still relevant and which are now out of date), as well as multiple other problems. So there was this huge rush of relief and that lasted several days before I just felt overwhelmed. It’s an experience I’ve had before: finally knowing is amazing but then the reality of it all sinks in and it’s just a lot to process. Life is suddenly different. It’s not what you thought it was. So, yeah, it’s a lot. I’m sure you know what I’m talking about if you’ve been through a similar experience. But I’m getting there. The dust is starting to settle.
We’re still waiting on some of the other things, like the Pain Management referral and the second appointment with the Rheumatologist. And I’m continuing with the OT; I’ll be graduating to a new set of exercises soon. I’m also super excited to swim again when it becomes possible. We’ve already got several slots booked at our favourite pool. Plus, I’m due to get my first COVID vaccine soon, which will make me feel safer about swimming, even at this pool that takes the safety precautions so seriously.
So this is where we are. As I said, I didn’t want to write this post until there was a natural stopping point in the writing of it. And this seemed to be that moment: we have the beginning, the diagnosis (or diagnoses), and now we have the treatment. Obviously that’s ongoing and there are still different areas to pursue for support. So, I guess, all we can do now is see how things go and hope the pain improves.
Category: chronic fatigue, covid-19 pandemic, diagnosis, medication, mental health, treatment, trichotillomania, university Tagged: career, cfs, chronic fatigue, chronic fatigue, chronic pain, compression gloves, coronavirus, covid-19, covid-19 vaccine, diagnosis, ecg, eds, ehlers danlos syndrome, fatigue, heds, hydrotherapy, hypermobile ehlers danlos syndrome, hypermobility, lockdown, lockdown 2020, masters, masters degree, medication, mri, music, occupational therapy, pain, pain attacks, pain management, pain management referral, painkillers, pandemic, pandemic 2020, physical pain, rheumatology referral, singersongwriter, songwriting, swimming, university
Posted on February 20, 2021
It’s a whole new year, a whole new semester… and a whole new lockdown. So I guess it seemed as good a time as any to do another of these week-in-my-life posts. A lot has been going on recently so I thought it might be a good week to document, as much for myself as for anyone else; it’s all been a lot to process and I thought this might help with that.
The week in this post began on Monday 1st February and ended on Sunday 7th February 2021.
I usually like to keep Mondays gentle, given that Tuesday is a long day with my uni classes but this Monday was different. I struggled up (I’m naturally a morning person but between my medication and the pandemic, I’m just tired all the time, which makes getting up in the morning a real battle), had a shower, and managed a bit of breakfast before my first official Occupational Therapy session – I’ve had a consultation but this was the first ‘practical’ session, I guess you could call it.
There were still a lot of questions – all the hows and whens and so ons around the pain in my hands – but the therapist also taught me a series of exercises that I should do daily and how they would help with my pain. She also explained how it all linked in with my hypermobility. So it was really helpful and an encouraging step forward after feeling stuck for so long but despite how little I had to do each day, the exercises caused more pain. I’ve been trying to continue with them as the therapist did say that that could happen but it’s hard to motivate yourself to put yourself through pain. I will have had another appointment by the time this goes up so hopefully I’ll have had some advice on this.
She also had some recommendations on private pools that we could book since swimming is the only real exercise I can do, for the lockdown specifically but also to use until the Hydrotherapy referral comes through. She’d also double checked the Pain Management referral to find that it hadn’t reached the department and so pushed it through personally – apparently, because the pain is impeding my education that puts me further up the list than I might’ve been otherwise. So that was all good but the appointment was pretty exhausting. I actually fell asleep for a couple of hours afterwards.
I woke up suddenly and realised I was ten minutes late for my cowriting session with Richard. That startled me awake, I can tell you that. I scrambled up and logged into Zoom. We had a really good session, finishing a song we’d started the previous week, ‘One More Time.’ I really like it and I’ve been singing it, the chorus especially, ever since we wrote it. It’s one of my favourite songs I/we’ve written recently.
With the demo finished, we talked about the upcoming projects we’re working on, alone and together, for our Masters and for our own projects. That was productive as well, although the creating is always my favourite part of any session.
Several of the cats had been hanging out with me the whole time (I think we were on the call for about four hours in total) and they were being ridiculously adorable. Mouse in particular looked very content with the situation. Having them around all of the time is one of the things that has made this last year bearable; I’m beyond grateful for them.
I was exhausted after that and curled up on the sofa with Criminal Minds. I’ve been rewatching it over the last few weeks and I’d forgotten how much I love it, how much I love the characters; I think Emily Prentiss was one of my first Favourites with a capital F TV show characters.
My mind was wandering and I was thinking about one of my current song ideas, one that hasn’t fully revealed itself to me yet, when the perfect hook popped into my head. Unfortunately, before I could even reach for something in order to record it, it was gone. It was infuriating. I must’ve sat there for an hour, retracing every train of thought I could remember having before the hook occurred to me but alas, I couldn’t get it back. And now, of course, I’m convinced it was the perfect idea: just what I needed to make the song work. So that was very frustrating, which didn’t help with how overwhelmed and stressed I’d been feeling over the previous few days. Part of that was due to the results of the last module being released a few days before. I’m often slow to open results – I like to wait for a moment when I’m feeling stable enough to handle a good or a bad result – but I also had three cowrites and a day of classes in the following days so I didn’t want my emotions about the grade to affect those. That said, I couldn’t forget about them completely and the not knowing was stressful.
Eventually I gave up on trying to conjure back up that perfect hook (*sigh*) and did some writing for the blog. I even managed to finish the post I’d been writing about Lucky. That was a hard one to write so I was glad to have it done.
Mum and I had dinner together and then we had a family video chat, one that specifically included my Granny in Australia because it was her birthday. Since it was a milestone birthday, at the very least some of us would’ve been out there to celebrate with her if not for the pandemic, something that’s been hard for all of us but especially the one of my four parents who’s her daughter. So it was hard, but having a video chat was better than nothing and I think we made the most of it.
After we hung up, Mum and I had a gentle evening, continuing with our Criminal Minds rewatch. I also tried to do some catching up with my diary. I’m so far behind now that it’s more like keeping up: I’m just barely managing to keep bullet points as prompts for some imaginary moment in the future when I have the time to go back and write it all out. I’m finding that incredibly stressful because the need to write everything down is only being partially fulfilled, leaving me with so much anxiety that sometimes I’m left feeling suffocated. But that anxiety is constantly battling with the anxieties of other things that HAVE to get done, like my Masters work. There just aren’t enough hours in the day. Plus, a lot of the time, I feel like my brain is wading through treacle, making it even harder to function. My brain feels a bit like it’s been hit by a hurricane; it’s just a chaotic mess and nothing’s where it’s supposed to be or doing what it’s supposed to do.
I went to bed early-ish, early for me anyway, but then I accidentally stayed up for several hours, watching videos on YouTube. One of the upcoming writing briefs for this module is to write a song based on a fictional story and I’ve wanted to write a song about Daisy Johnson from Agents of SHIELD forever so this seems like a good opportunity; maybe a deadline is what I need to make it happen. So watching all of these Daisy Johnson videos on YouTube and listening to the songs that people associate with her is research of sorts. I’m still trying to work out the perspective I want to write the song from, whether it’s about a particular moment in time, or about her emotional journey, but I found several songs that definitely have potential as inspiration. It didn’t exactly help my brain wind down though.
I managed to sleep through all of my alarms, which meant that I was almost an hour behind in getting ready for the day – my uni classes day. So I had one of the fastest showers of my life, put on minimum make up, and inhaled some breakfast, logging on just in time for my first class. Definitely not the most fun or graceful start to a day.
My first class of the day was our workshop, where we present the songs we’ve written based on the techniques we learned in the seminar the previous week. Due to a meltdown, I’d actually missed the seminar, which had been on the techniques of song maps and pyramiding, but after reading the resources and a long discussion with one of my friends who’d been at the seminar, I felt I understood the theory enough to at least attempt to apply it. I’d written one song with Richard and another with one of my coursemates, both of which I really loved. There was only time for one of them, given how many people had brought songs (some days, everyone brings a song and we have to be really efficient whereas on others days, some people haven’t brought a song and there’s more time and people can present both cowrites and songs for their own projects), and the cowrite with my coursemate got chosen. It was well received with a healthy amount of suggestions for improvement, some of which we agreed with and some we didn’t. We’re planning to work on it again soon, since one of the upcoming briefs is to redraft a song.
There were some other really cool songs played during the session but I don’t want to say too much about them since they’re part of other people’s projects. Having said that, my group is packed full of amazing writers so whenever they release music, I’ll be sure to share it on my social media. So check those out if you want to hear about these awesome up and coming artists and writers…
It was a good class but then we had a four hour break before the seminar in the afternoon, starting at 4pm. Tuesdays are hard for me: they’re long and they require a lot of energy and focus, especially the three hour seminar. So I’ve taken to using the break to have a nap to recharge for that class. I slept for almost three hours, had some food, and quickly recapped the notes from the last seminar before we got started again.
We began by discussing what we’d worked on over the previous week – song mapping and pyramiding – and talked about how we’d implemented songs maps into our work, what impact it had had on our writing process, and what we’d struggled with. Having missed the seminar where song maps had been introduced, I’d struggled initially but having incorporated it in the writing of several songs, I do feel like I’m getting more of a feel for it. We had some interesting (and, at points, entertaining) debates over various elements before moving into the new topic: different approaches to cowriting. In groups, we were encouraged to just talk until one of us said something that might make an interesting song and then start writing that song together.
I’d initially been worried about being dropped into a group of people I didn’t know and asked to create something so I’d spoken to my tutor and we’d worked out a solution that I’d be in a group with at least one person I knew. I’m always keen to write with new people but, being autistic, it’s a lot easier and a much more positive and productive experience if I have, at the very least, spoken to them beforehand. So having one person I already knew just created a safety net in case I got overwhelmed or something. I actually knew two people in my group and then there was another guy I hadn’t previously met; we got on really well with lots of laughing and goofing around but we also came up with a really strong concept and started working on the song. So we did pretty well, I think.
When the class ended, at 7pm, I was exhausted but the nap had helped. I wasn’t completely floored like I often am. I even managed to work on a song I’m currently writing, one called, ‘Astronaut.’ I’m usually barely capable of eating dinner and catching up with my diary so that was quite an achievement. The nap had clearly worked wonders.
There wasn’t much left of the evening but my Mum and I had dinner and continued our Criminal Minds rewatch. I also worked on a couple of blog posts before going to bed far too late, as is my norm at the moment. I just get this weird anxiety when I start getting ready for bed. Maybe it’s to do with anxiety about being unable to sleep, maybe it’s anxiety about a period of unproductive time (that’s something I’m struggling with at the moment)… I don’t know. And it just makes it even harder to get to sleep.
It took me a long time to wake up on Wednesday morning; I just couldn’t open my eyes. I feel like I’m having more and more trouble with mornings; my antidepressants are very sedating, which is one of the reasons I’ve been thinking a lot about trying a new medication. It’s just such a tough process and there never seems to be a good time.
When I eventually managed to keep my eyes open for longer than a minute, I forced myself up and had a shower before settling at my desk in the living room. With Criminal Minds as a backdrop, I spent several hours working on blog posts. I struggled to concentrate though because, in the back of my mind, I was aware of the fact that last module’s grades were still waiting to be opened. They’d come out the week before but I’d had three cowrites and a day of classes ahead of me and if the grades were bad, I didn’t know how I’d manage to be present and productive in those sessions. So they were still sitting there, unopened, and I was very aware that I really should open them and look. But it was really hard to make myself do it.
Eventually I did, when Mum went out to do the food shop. It’s not that I didn’t want her to know or anything; I just find it easier to see results, have my initial emotional reaction in private, and process it a bit before sharing the news with people. I was happy with the grade – for the most part (but then I’m a perfectionist and always somewhat disappointed if I don’t do exceptionally, something I think is an unfortunate consequence of being a really high achiever at a young age) – but I did have some issues with the feedback. Reading through the feedback sections, I felt like we hadn’t been assessed on what we’d been told we’d be assessed on. The more I thought about it, the more upset I got. I’d worked so hard and talked to the tutors so many times in order to get a clear pictures of the module and how it was assessed and then to see feedback that felt fairly unrelated to what I’d been told was actually really distressing. I guess I felt (and feel) like I would’ve done things differently if I’d known the type of feedback the work would receive. I’d worked so hard on my assessment submissions so that was just quite deflating.
I talked about it a lot with my Mum and after that, I was just exhausted. So I put on some Criminal Minds and spent most of the day working on blog posts. Or trying to, at least. Wednesdays are always my least productive days, like my brain and body borrow from Wednesday to get through Tuesday, leaving Wednesdays significantly depleted of… just everything. So I always try to avoid putting anything important on a Wednesday.
So a gentle afternoon turned into a gentle evening, watching Criminal Minds and writing for the blog in front of the fire. The cats love it when we have a fire. They all congregate in the living room and spread out in front of it, occasionally rolling over – ever so casually – to warm a different side of their bodies. It’s adorable.
I managed to go to bed at a reasonable time, watched some more Daisy Johnson videos, and was actually asleep before midnight.
I had to get up painfully early to go to the dentist (my dentist is a safety hub, which apparently means they can be open during lockdowns because they look after people with disabilities, although I didn’t know this until fairly recently), which wasn’t a pleasant experience. They have really strict safety procedures (the only reason that I feel safe going there), like an hour between each patient to sterilise the room and so on, so it takes a long time to get an appointment. Unaware of the fact that I could go to my dentist until a few months ago, it’d been a long time since I’d had a check up and so there was quite a lot to do. I’m not gonna go into detail because I don’t think anyone enjoys descriptions of dental work but it was a difficult experience, moreso than usual. I find the noises of the machines particularly difficult and in excess, they get dangerously close to triggering a meltdown, so by the time the appointment was finished, I was completely exhausted.
Back home, I finally managed to get through the Occupational Therapy paperwork and start doing the exercises for the pain in my hands and wrists. Despite the simplicity of the movements, it was hard work and every joint from my fingertips to my elbows hurt afterwards. I made a note of it to report back to the therapist – I had another appointment in a week – and took some painkillers that eventually took the edge off.
It wasn’t long before my next appointment, by phone this time with the Chronic Fatigue Service, so I lay on the sofa and watched Criminal Minds for a little bit while I recharged and gathered my thoughts for the call. I was already apprehensive about the call as it was a doctor I’d previously had a really bad experience with – one I’m tempted to go as far as saying was traumatic. It was a long time ago now but I was still anxious about the whole thing.
It turned out to be exhausting, upsetting, and a complete waste of time. He had very little of my history so most of the hour was spent taking a very extensive history, involving questions ranging from my parents health to my diet to my mental health diagnoses to my medication. And after all of that, he basically said that my case was too complicated for them, that with the more recent diagnoses – including the hypermobility diagnosis – I was better off with my current specialist. What may have previously been perceived to be Chronic Fatigue Syndrome might actually be Persistent Fatigue associated with hypermobility but it’s hard to be sure. But not only did we hang up with less clarity than when we started the call, the whole thing was just… unpleasant and awful; he claimed that I’d been diagnosed with CFS in 2007 by a doctor I don’t even remember seeing according to a letter that neither my Mum nor I remember getting; he was critical of how much Red Bull I drink (due to the sedating effect of my medication as far as I can tell) and acted like I was doing it for fun, not because it’s the only thing that keeps me awake and functioning; he talked about a set of blood tests that were never discussed with us, which was particularly alarming as one of the results could’ve indicated cancer… And on and on. It was a complete fiasco. Every time I think things can’t get worse with doctors, they do. I could’ve had cancer and no one ever even bothered to mention it. I mean… I don’t have any words.
So that was basically the day written off. I was just too distressed and too exhausted. There was an extracurricular uni session in the evening but I was just too tired. I knew I wouldn’t be able to focus and it would be recorded so I could always catch up later. Instead I spent the evening watching Criminal Minds and very, very slowly adding to some blog posts. I did get some exciting music news but unfortunately I can’t share that yet. So the day did end on a better note.
There’s no particular reason to include this picture other than the fact that I thought it was adorable: cat yoga on a piano.
I went to bed early, watched a few more Daisy Johnson videos (at the moment it feels like the only time I feel able to take the time to watch YouTube videos is right before bed or before I get up in the morning), and eventually went to sleep.
I got to sleep in a little bit and then it was up and out to the hospital for an ECG (echocardiogram). Since a small amount of people with hypermobility develop heart problems, I’ll have to have ECGs every five years or so to make sure everything’s okay. I wasn’t too worried about it but again, it was another distressing medical experience.
I’ve had an electrocardiogram before and just like that, you’re asked to undress so that the ultrasound wand can get a good image of every necessary angle of your heart. But I just couldn’t do that: the idea of being so exposed in front of people I didn’t know was and is nightmarish to me. I don’t know if that’s an ASD thing or or me thing or what. They looked at me for what felt like ages before reluctantly allowing me to keep my bra on, telling me that they likely wouldn’t get as good images. I was trying not to lose it completely so, as you can imagine, that was a super helpful comment. And then, to make matters worse, the doctor pressed the wand against my chest so hard that it physically hurt; part of me wondered whether it was a punishment for being ‘difficult.’ I couldn’t breathe properly and it hurt so much that I was almost crying, especially when she pressed it against my sternum.
When it was finally over, my Mum asked if they’d gotten what they needed and they said that they had. So much for my bra being an issue. When I was fully dressed, Mum asked me to wait outside; she was five minutes maybe and then we were out of there. She told me that she’d just done what she normally ends up needing to do with medical professionals and explain how important the language they use with autistic patients is (because, as usual, they didn’t know how to work with an autistic individual). So, for example, instead of saying they probably wouldn’t get the pictures and therefore making me feel guilty for my anxieties, they could’ve said that they could try and then, if they couldn’t get the pictures, we could all re-evaluate together, which would’ve made me feel like they were at least trying to work with me rather than dismissing my difficulties. Apparently they thanked her for sharing her experience and said that they would take it on board; whether they will, I can’t say.
The whole experience had been distressing and exhausting and I was barely holding it together. I just wanted to get home and curl up under a blanket in the safe little bubble that is my living room, curtains closed and fairy lights on. So that’s what I did. I attempted some blog writing but it was very half hearted; I was just really drained by the experience at the hospital.
Early afternoon, I had a therapy session. It was probably too much on top of the ECG experience but then I hadn’t expected that to be so dramatic and emotional. Again, I’m drawn towards the word traumatic but I guess I’m reluctant to call it that as just a person and not a mental health professional. Had it just been the one time, I wouldn’t think to call it a trauma – I’d call it distressing or deeply upsetting – but as the latest in a long line of deeply distressing experiences at the hands of medical professionals or in medical settings, it feels like it’s bigger than that, that those experiences have built up to create a big ball of trauma.
It wasn’t easy but somehow I managed to pull myself together enough for my therapy session. A lot had happened since my last session so there was a lot of catching up and processing, most especially about the medical stuff that’s been going on. It was really hard, both in the sense that it took a lot of energy to talk about it all and in that it kicked up a lot of emotions. It’s weird: it’s like I’ve been boxing it all up and hiding it under the bed for years and suddenly, the recent appointments have just kicked the lid off and I can’t get it all back in, like when you have to sit on a suitcase in order to zip it closed. So now all those emotions are just everywhere and I can’t move without tripping over one or another of them.
We finished up the session but I knew that if I stopped, I was really going to crash so I did some prep work for a cowrite I had the next day; I really don’t like going into cowrites without anything prepared, even if it’s just a list of relevant words or phrases. Since we ended up writing about something completely different, I think it’s probably fine to talk about the song we were planning to write: we’d been talking about our personal concepts of time and how time feels different since the pandemic began. So that was our concept but we needed to refine it so that it would work in song form. So I spent some time looking up interesting words in the thesaurus, searching for inspiration on quote websites, and free writing about how I’ve been feeling over the last year in relation to time. There were a few quotes that I loved and could’ve drawn inspiration from if we hadn’t jumped ship and worked on a different idea:
I thought those three quotes in particular were beautiful. I could write a song based on each one.
Late afternoon, I logged into Microsoft Teams for our group cowrite – a session to finish the song we’d started during Tuesday’s seminar. We’d already written most of the song but we kept writing and refining. We had a really good time together but we did talk about whether four people were necessarily needed for the first draft of a song. Having said that, I think everyone contributed in their own ways and the song wouldn’t be what it is without all four of us. We ended up being on the call for over two hours before deciding to call it a day. I was a bit frustrated to leave it unfinished again but I think that’s just coming from my issues with productivity; I hate leaving things incomplete. I was still staring at the Google Doc when I had a spark of inspiration and jotted down a full bridge to look at next time. I thought it worked well so I was hopeful that the others would like it too.
Less than ten minutes later, one of my parents (who doesn’t live with us but is in our support bubble) arrived. We try to have an evening a week where we just hang out together and have some real human interaction. We treated ourselves to an Indian takeaway and caught up while we waited for it and then watched a couple of episodes of Lucifer, the show we’re currently watching together. It was very chilled out and I was practically asleep on the sofa when she got up to leave.
Mum and I watched a couple of episodes of Criminal Minds before going to bed and I watched a few more Daisy Johnson YouTube videos. This is one of my favourites so far:
It’s one of several that are sort of building a sonic picture in my mind as I put this song together. Yeah, I’m trying to work out how to write my own Daisy Johnson song but I’m also realising that it’s a form of procrastination too. When I lie down at night, my thoughts start to spiral and the spiral gets tighter and tighter until I can’t think or breathe. I definitely can’t relax enough to sleep. I’ve tried all of my strategies but they don’t seem to be working so I’ve been seeing the early hours of the morning a lot more often recently.
After going to sleep so late, I slept in, hours and hours later than usual. I missed almost half of the day, which was very disconcerting. And even awake, I couldn’t summon the energy to get up for a while so I scrolled through Twitter on my phone. I’ve recently gotten into #ActuallyAutistic Twitter (I knew it existed but hadn’t spent much time looking at it) but I’m still not entirely sure how I feel about it: some of the people on there are really lovely and share valuable tips and information but I’ve also seen some pretty intense debates that make me feel quite anxious, like it wouldn’t be safe to express my opinions or experiences without someone judging me or telling me how [insert word here] I am. So it’s a mixed bag and I’m not sure whether or not engaging with it is good for my mental health, right now at least.
Eventually, at about half twelve, I dragged myself up and into the shower. The points where they’d pressed the ultrasound wand were really tender and painful. There wasn’t any bruising but they hurt to touch.
Shower done, I settled in the living room. Sooty immediately hopped up for cuddles and ended up spending most of the day tucked up against me in one position or another. It was very cute and very soothing.
With so many big posts coming up, I decided to post a short, less intense post, editing and posting another Little Things post. It’s true what I write in those posts: I do want those of you who read my blog to know who I am as a full person, not just a Picasso painting made up of the specific parts I talk about in any given blog post. That’s part of why I write these posts too.
When that was finished and posted, I did some admin stuff, mostly emails: some music stuff, plus some messages around my long term project of tracing my family history (that’s a story for another post). I also continued my attempts at redrafting the lyrics of ‘One More Time’ but I was still struggling to get it right. It was going to be super satisfying when I finally hit the right combination of words but until then, it was somewhere between a really complicated Rubik’s Cube and banging my head against a wall.
Eventually it was just getting too disheartening so I took a break. I went to Tumblr as I often do for inspiration and while I didn’t find anything to help with this song, I did find some cool art, some interesting lyric analysis, and some beautiful gifsets from several of my favourite TV shows. At the very least, it released some of the tension in my brain.
It was an evening of Criminal Minds, dinner, and my physio exercises. Oh, and a further attempt at redrafting ‘One More Time,’ but still no dice. It’ll get there at some point; I just don’t know when. My brain just feels really overloaded and overwhelmed at the moment and that makes it really hard to think when I get stressed or anxious. And it just snowballs, everything getting worse and worse until I feel like I’m so twisted up in this net of my own thoughts that I can’t move, can’t think clearly. It’s exhausting and yet, sleep is such a struggle.
I really struggled to wake up but eventually I managed to drag myself into the shower and then the living room. One of the cats, Tiger, immediately sought me out for attention and paced relentlessly until I gave in and devoted all of my attention to her. The cats are all getting far too used to us being around all of the time…
Late morning, I had a FaceTime call with a friend that went on for over an hour. That was really nice and we had a good laugh, which I really needed after the week it had been. It gave me a much appreciated boost, which was only heightened by the flurries of snow outside. That was very exciting and when I went downstairs after the call ended, I got to enjoy watching the cats in the garden, watch their befuddlement at the snow: the little shakes when it landed on them, the pouncing on the settling snowflakes… It was incredibly adorable.
Back upstairs, I did a bit more thinking and searching for inspiration – in my various songwriting notes, in my diaries, on Tumblr – for my upcoming cowrite and I worked on that until it was time for the video call, about an hour later.
I think it was a good session, especially for a first time cowrite. It was with another of my coursemates and while she and I have known each other a while now, we hadn’t managed to write together up to this point. We had a good time and laughed a lot while still managing to write most of a really promising song in about ninety minutes. So I feel like we did well. I like the song and I like the message behind it; hopefully we can finish it sometime in the near future.
So I finished the session in a really good mood, that is until I saw that Sia’s dangerous, offensive, and incredibly ableist and problematic film, Music has been nominated for two Golden Globes. I was – I am – disgusted and appalled by how little so many people – in this case, the film industry – care about the wellbeing, the opinions, and the happiness of the autistic community. It’s horrifying. It makes me want to scream at someone but there’s no one to scream at. Put me in front of the Golden Globes people and I’d rip them a new one but that’s not gonna happen, not in this reality anyway.
can someone pls with a bigger platform talk about the fact that the golden globes nominated music, sia’s horrifically ableist movie, twice?? and the implications of that for autistic people ?
— maisie (@maiisiesh) February 3, 2021
Sia's 'Music' is a possible Golden Globe winner.
The film glorifies physical harm & inspiration porn for neurotypicals & a neurotypical was cast for a non-speaking autistic role.
Sia's response to #ActuallyAutistic critique with abuse.
Spread word: #NoGoldenGlobeForMusic
— Mx. Charis Hill ♿ (they/them) (@BeingCharisBlog) February 4, 2021
— Lauren Alex Hooper (@laurenahooper) February 7, 2021
Not sorry enough to pull the movie. Not sorry enough to reject the award nomination. Not sorry enough to leave her apology up on Twitter. Not sorry enough to reach out to the people she directly insulted. Not sorry enough to tell her fans to leave #ActuallyAutistic people alone. https://t.co/8zuYKvVqGM
— Julie Atwood (@jmatwood) February 7, 2021
– because Sias movie „Music“ portrays traumatic, deadly prone restraint as the appropriate response to autistic meltdowns.
– because „Music“ erases & harms autistic people, especially non-speakers.
— autistictic (@autistictic) February 3, 2021
I did my best to have a quiet evening since I had another busy day ahead of me but I couldn’t shake off all the unpleasant feelings around Sia’s film. I tried to distract myself and work on ‘One More Time’ but I just couldn’t focus. I was too emotional, too overwhelmed. I wouldn’t have been surprised if I’d spiralled into a meltdown, if not for the fact that I was too tired to even cry.
In the end, my Mum and I watched some more Criminal Minds while she gave me a neck and shoulder massage (one of her many lives was as a massage therapist). The pain is creeping higher and higher, up my neck and into the base of my skull so although it wasn’t the most comfortable experience, I felt better for having it. Less tension, less pain. Some of the time, at least.
Again, getting to sleep wasn’t easy but it was a better night than others so I’m grateful for that. I’ll take whatever I can get right now. I’m waiting on various things that will potentially help but everything’s moving very slowly. My logical brain is very understanding, given everything with the pandemic, but my emotional brain is less rational, struggling to cope with the pain and the anxiety and the lack of sleep. As human beings, we are more than capable of holding two such opposing emotional responses but it being possible and it being easy aren’t the same thing, are they?
Somehow that ended up being a lot longer than I’d planned, than I’d expected it to be. But apparently there was a lot of stuff in my head that was intent on getting out. Life feels pretty complicated at the moment.
Category: about me, animals, anxiety, autism, chronic fatigue, covid-19 pandemic, depression, diagnosis, emotions, meltdowns, mental health, music, quotes, sleep, therapy, treatment, university, video, writing Tagged: 2021, a week in my life, ableism, actuallyautistic, actuallyautistic twitter, agents of shield, antidepressants, anxiety, anxiety disorder, asd, assessments, autism, autism spectrum disorder, autistic, autistic adult, autistic student, birthday, blog, blog writing, cats, cfs, chronic fatigue, chronic fatigue service, chronic pain, compulsive writing, coronavirus, covid-19, cowriting, cowriting session, criminal minds, daisy johnson, demo, dentist, diary, diary writing, drowsiness, ecg, echocardiogram, emily prentiss, family, family history, family of cats, feedback, friend, golden globes, grades, grandparent, granny, hydrotherapy, hypermobility, hypermobility diagnosis, lockdown, lockdown 3.0, lucifer, massage, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medical trauma, medical treatment, medication, meltdown, music film, my cats, occupational therapy, pain, pain management referral, pandemic, pandemic 2020, part time masters student, part time student, persistent fatigue, pyramiding, quote, quotes, remote therapy, remote writing session, richard marc, richard marc music, richard sanderson, seminar, sensory overload, sia, sleep, snow, song mapping, song maps, songwriter, songwriters, songwriting, songwriting inspiration, support bubble, swimming, therapy, trauma, tumblr, twitter, university, video, videocall, week in my life
Posted on December 31, 2020
What the fuck was this year? I don’t even know. To think I ended 2019 with the phrase: ‘2020, please be kind.‘ I really don’t know how to write about this year. Time has become a bit of a nebulous concept and after a lot of thought, the only way I could divide up this year was by separating it into three ‘chapters’: pre-pandemic, lockdown-into-summer, and semester three of my Masters. It’s a bit of a weird system but then, is there anything about this year that hasn’t been weird?
So, here we go. This is my review of 2020, a year I’m sure none of us will ever forget.
The beginning of the year, the two and a half-ish months before the pandemic became less about ‘wash your hands’ and more ‘we’re going into national lockdown’ (in the UK anyway), feel impossibly long ago and kind of frighteningly busy. Looking back through my photos, it’s so odd to think that that version of me – of all those people in the pictures – had no idea what was coming. And now we’re entirely different people. I mean, I know I’m a completely different person because of the last nine months. I’m only speaking for myself but I imagine that a lot of people can relate to that feeling. I look at photos of myself from January, February, March and I almost don’t recognise myself…
Anyway, on with the review.
I wrote up January at the time because it was such a busy, emotional month. I had a frantic Christmas break, preparing for my January assessments (due to a misunderstanding about the assessment, a lot of my research wasn’t helpful and so I had to redo it so I got almost no free time during that holiday). That was incredibly stressful, as was the presentation, and I was beyond exhausted afterwards. And between the second single of the Honest EP, ‘Clarity,’ coming out and the very distressing DSA assessment in the following week, I didn’t really get any rest between the first and second semesters. And to top it off, I was pretty upset about the grade I received and by the time I felt coherent enough to appeal it, the deadline had passed. But in hindsight, it was the first grade of the Masters with a very new approach to working and grading so it’s probably not that surprising, especially as an autistic student.
The new module I was studying, Musicology (“the scholarly analysis and research-based study of music”), was really interesting and for the most part, the lectures were really engaging, something that was definitely aided by how passionate my tutor was about the subject. I’ve known him since my BA and he’s so knowledgeable; he’s a really great teacher and he’s a big part of why I did so well in the module. Not that my tutor in the first module wasn’t great – she’s truly awesome and so inspiring and I learned so much from her – but I learned a lot about how the Masters worked in that first semester that I was able to put into practice for the second semester, making it easier on my mental health and helping me to work more effectively, which did result in a much better grade. I found the songwriting classes less inspiring but since I was challenging myself with FAWM (February Album Writing Month) for a big part of the module, that wasn’t too big an issue.
I got to spend some really good time with my friends, both in and out of uni. A couple of them came down from London to visit me, which was really nice. Others I spent time with at uni or around London. I also had lots of writing sessions with people, which was really, really fun. I love my uni friends so much – I love my non-uni friends as well, of course, but during the semester, I rarely get to see them because I’m so busy – and there are a solid handful of people I’ve met during my time at BA and MA that I know I’ll be friends with for a really long time. I feel like I learned a lot about friendship this year, as I mentioned in my grateful post, and I just feel so lucky to have met these people; they are so wonderful and I’ve found it really hard to be separated from them for so long. I’m so looking forward to seeing them again and being able to spend time with them in real life whenever that will be.
(I haven’t got photos with all of my friends from this year and I do like to use photos from the year I’m writing about but don’t worry, you’re most certainly not forgotten.)
As well as writing A LOT, I was releasing music and got to play several really, really fun shows but I want to keep the music stuff together so I’ll come back to those.
One sadness of that time was that my favourite place to eat in Brighton closed, first temporarily and then permanently. That was very sad and I know a lot of people were upset by it. They made amazing Belgian fries with loads of homemade sauces and drinks – that I LOVE – that I’ve only ever had when I’ve travelled to and around the Netherlands where I have family. And the staff were absolutely lovely and it was always such an enjoyable experience; I always took friends there when they visited Brighton. So that was a shock. With everything going on this year, I probably wouldn’t have been able to go (and I’m not sure it would’ve survived as an independent business) but I have missed it. It was a true Brighton gem for the time it existed.
I think it’s safe to say that the biggest part of January, the pre-pandemic part of the year, and possibly the whole year, was having to let go of our beloved Lucky, our nearly sixteen year old black Labrador who we’d first met at three days old. He was very old (most Labradors live to between ten and twelve) and had developed some very difficult health problems in the last year or so of his life. We got home one night and he didn’t get up. He didn’t lift his head. He didn’t wag his tail. He was just done. It was heartbreaking and one of the hardest decisions I’ve ever been a part of but the next morning we took him to the vet and they put him to sleep. It was awful and I still miss him everyday, even though I know it was the right thing to do. He couldn’t have been more loved, by us, by everyone he met. He was a bit of a legend. I still wish him back but, again, as I said in my Grateful post, I’m glad that he hasn’t had to live through the pandemic, the sensitive soul that he was; it would’ve been very stressful for him. And the idea that we might’ve had to have him put down during one of the lockdowns where we couldn’t be with him is unbearable, so I do take some comfort from that timing. Still, the house feels empty without him.
Life was fundamentally different after that but we kept going, day by day, and there were good moments. I got to see my course mates put on an awesome show at a local venue, Song Suffragettes announced that they were coming to the UK on tour (I’m pretty sure I dug into my savings to get a ticket for every show…), and my Mum and I celebrated Lucky’s sixteenth birthday, even though he was no longer with us. I’d been planning it and so we just decided to celebrate for ourselves. I think that, in the future, we will think of him or go on a specific walk or something to remember him, even if we don’t actually ‘celebrate’ his birthday. The date will just be an excuse to dedicate some time to thinking about him and all the years we had together.
As well as dedicating the month of February to FAWM, I also took on the #30dayfeb Challenge For Tommy’s, organised by my university tutor/friend/mentor/super inspiring person, Sophie Daniels, under her artist project name, Liberty’s Mother, to raise awareness about baby loss and money for baby loss focussed charities. The challenge involved doing something everyday for thirty days that was positive for your wellbeing; I saw a lot of people doing yoga, for example. I chose origami and made a different piece everyday. These were some of my favourites:
I was lucky enough to see several shows and concerts before everything closed down. That’s something I’ve really missed this year as they’re sort of THE thing that I spend my money on and go out to. I was going to see The Shires, Alanis Morissette, OneRepublic, The Phantom of the Opera, Hamilton, the Song Suffragettes UK Tour, Taylor Swift at Hyde Park, and Tin Pan South in Nashville – those last three cancellations in particular hit me the hardest. I’d been so looking forward to them so I was really, really upset when they were postponed and then eventually cancelled.
However, I did manage to see Halsey twice on The Manic World Tour, which was incredible. I love her, I love this album (it was one of my favourite albums of the year), and the show was just mind-blowing. It was awesome to see her get to play at The O2 Arena (her biggest headline show to date, I believe), especially on International Women’s Day. She’s an amazing performing but I also love how she speaks to the crowd; it feels like she’s speaking just to you. I wanted to run out of the arena ahead of all the crowds so that that illusion wouldn’t be broken. Both shows, but especially that show in London, felt very special.
I also got to see Sara Bareilles in Waitress The Musical several times. I’ve seen several actresses (all amazing) play Jenna but there was something really special about seeing Sara play her, as the person who’d written so many beautiful songs coming from her perspective as a character. It took a minute to stop seeing Sara as Sara and start seeing her as Jenna but once I’d gotten my head around that, I was just enthralled. She was fantastic and so special; I loved the show all the more for seeing her in the lead role. I was lucky enough to go a handful of times and of those, on several special occasions (sometimes on purpose and sometimes by accident): I saw Sara’s first show, I saw the one year anniversary of Waitress in London show, and I saw Sara’s final show, which also turned out to be Waitress’ final London show. So while I knew that show was special, I didn’t realise quite how special it was until much later. I tried my best to meet Sara (one day, I hope…) but for most of the shows, Sara was either out of the building before we could line up or we were hustled away pretty quickly. I did see her on the last night – she walked up and down the queue of people waiting and waved to everyone – but she didn’t stop to talk or take pictures or accept gifts because of the growing concern about COVID-19. That show was actually the last thing I did before we went into lockdown, not that I knew it at the time.
Everything changed very quickly. One day I was talking to my friend about plans we had later in the week and the next, she was on the plane home before the borders closed. I made the decision to start self isolating but before I would’ve had to go back to uni (or, having come to this decision, contact them about it), the classes were moved online.
The UK officially went into national lockdown on the 24th March. I’d already been self isolating for eleven days, as had my Mum, apart from necessary trips out (food shopping and business related stuff that had to be done in person). I had two weeks of online classes plus my assessment essay, which I was already working on. It’s strange: at the time, I wasn’t really aware of the outside world because I was a hundred percent focussed on my essay (and it was probably the most difficult, research heavy essay I’ve ever had to write). Maybe I was channeling all of my anxiety into that so that I didn’t have to engage with my paralysing anxiety about the pandemic. But then the essay was done and submitted and it all came flooding in.
Between the inevitable post semester and assessment period crash and the pandemic anxiety hitting me full force, I just went to pieces. I was either having meltdowns or staring blankly at old tv shows, too overwhelmed by fear to function. That went on for weeks and to be honest, it’s kind of a blur. I think I was in some sort of checked out, survival mode haze. I just could not cope. In hindsight (and in the few moments of coherent thought I had at the time) I was and am so grateful that I had that summer semester off. Many of my friends on the Masters were having to work on their final projects during one of the toughest periods of our lives (and created incredible work in spite of it) and I just could not have done it. My mental health was in tatters. Even now that I’m in a better, more stable place, I still feel deeply traumatised by the events of the last nine months: by the constant fear and paralysing anxiety, by the sheer overwhelming grief that so many people have experienced and are experiencing, by the confusion and frustration and outright horror at how the government – the people we depend on to lead us and take charge during extreme situations – have behaved. I mean, how do you cope with completely losing faith in your country’s leaders? Who are you supposed to turn to? Anyway. That could easily turn into a rant and that’s not what this post is about.
I’m not really sure when I started to come out of that because it was such a gradual process. But slowly, with LOTS of ups and downs, I started to feel more able to engage – if only with the people directly around me and the things that I enjoyed doing. Thank god for the cats (and Mum – I’ve talked about how grateful I am for her in my Grateful post – but we both agree that the cats were a lifesaver during the lockdown). They’ve been so good for my mental health this year. It’s so mindful to watch them; you can’t help but feel calmer, watching them play or snuggle and so on. Especially without Lucky, their cuteness and cuddles have been vital and the ridiculous playful moments have made me laugh even when it felt impossible. I’m so, so glad to have had them around during this time and they certainly seem to enjoy our constant presence at home; a day rarely goes by without one cat or another draping themselves over me. As I said, they’ve been a lifesaver. I don’t know how I would’ve made it through without them.
I had online therapy sessions but I struggled with them and often ended up cancelling at the last minute because they just felt too overwhelming. All I could think about was the pandemic and my fears around it; I didn’t want to dig into that even more and it felt impossible to talk about anything else. So my sessions were fairly sporadic throughout the lockdown and most of the year really. I think, in hindsight, therapy just felt too big, too overwhelming to be helpful while all of my emotions felt so incredibly heightened and raw. I was just focussing on getting from one day to the next. The cats were a big help; I started escaping into the worlds of new films and TV shows, like Absentia and Away; and I lived for the livestreams that a handful of people were doing in place of live shows. My favourites were Kalie Shorr’s, both because I love her and because she did so many of them. She did interviews with both interesting and entertaining questions, played covers, and played her own songs, released and unreleased. I’m so grateful to Kalie for doing all of that; they really helped me keep going, helped me get through the darkest of my pandemic-induced depression.
As I said, towards the end of the first UK lockdown, I became a bit more functional, although it was like balancing on a tightrope: one little knock and I was plunging back into overwhelming anxiety and depression. And it happened a lot. But I also had better, more productive moments. I managed to write a couple of songs (which is pretty monumental what with my mental health being so bad); I had writing and production sessions with Richard; I started gentle music theory lessons in preparation for the upcoming semester with one of my parents (she’s a music teacher); I spent a lot of time playing piano (I started experiencing awful nerve pain in my left hand – as well as in my back and leg – during the first lockdown so playing guitar was basically impossible); and I stayed up until almost six am to watch Ingrid Andress’ first livestream show and chat with her in a meet and greet session afterwards. So I was doing just about okay. Probably the biggest help was that all of my family (and most of my friends) were being exceedingly careful around going out: fortunately able to work at home, they only went out for essential trips, like food shopping and picking up medication, etc. I’m so grateful to them for that. So beyond grateful.
The lockdown began to loosen and more and more people were out, which I found terrifying. The silence outside had been weird at first but suddenly every little sound turned me into an anxious mess. Hearing people converse outside the shop we live above, for example, caused so many panic attacks (for fear that those people were spreading the virus). It was awful. For most of the summer, I kept the windows and curtains closed, enclosing myself in my own protective little bubble. It was the only way I could find to protect my mental health. With the gyms opening, I was desperate to swim again (as I’ve previously mentioned, it’s the only exercise I can do) – both for my physical and mental health – but I just didn’t feel safe at my usual pool. Their precautions just didn’t feel tight enough. On the plus side, after various COVID tests, I finally got to see my brother for the first time in months – longer than I think we’ve ever gone without seeing each other. We were still careful but it was so, so wonderful to see him.
Meanwhile, music stuff (mostly to do with the Honest EP) was still happening. Again, I want to keep most of this together (I’ll probably put it all in one paragraph towards the end) but I think this particular day is important beyond the musical context. I’d spent a lot of time worrying about the music video for ‘Back To Life,’ the next single due to be released at the time because my original idea wasn’t going to be possible during the pandemic, even with the lockdown restrictions having been loosened. Richard and I spent a long time discussing it and eventually came up with a plan…
The filming of the video was a big deal for me. I found it very difficult and very stressful being out for so long (even though our planning meant that, of the videos we shot for the EP, this one took the least time) and just being near people caused me a lot of anxiety, even down on the beach at the water’s edge. We were incredibly careful and I did manage to enjoy it to a certain extent but I’m grateful not to have to do another music video under such conditions. It took everything out of me; I spent the next three days on the sofa, barely able to move from the exhaustion. I have no idea how I managed to look so relaxed and even happy in the video. But, as I said, I’ll talk more about it when I talk about the whole EP process this year.
The rest of the summer was pretty gentle. I was trying really hard to improve and manage my mental health. It still wasn’t great but I was coping better than I had been earlier in the pandemic. So I spent a lot of time doing things that have proven to be good for my mental health: I listened to the Taylor Swift’s new album, folklore, on repeat; I played a lot of piano; I wrote songs when I could; I had video calls and online movie nights with my friends; I kept writing for the blog. I took part in research projects involving Autism Spectrum Disorder, Chronic Fatigue Syndrome, Depression, and Anxiety; helping out with these always gives me a mental and emotional boost because it feels like some good is coming out of my difficulties, even if they don’t improve my experience directly. I also watched the final season of Agents of Shield, my favourite TV show ever. That was a very emotional experience because the show, and the character of Daisy Johnson, have been a really important part of my life over the last few years and the emotional processing of stuff from my childhood.
And I continued to work on my music theory as the module was based on these concepts and I wanted to be as prepared as possible but I found the idea of going back to university very stressful. I really didn’t want to defer so I spent a lot of time thinking about what I wanted to do in terms of the new semester, what I felt safe doing. I’d originally thought that I’d much rather defer than do online or blended classes but now that the semester was almost upon me, I felt a lot less sure. After a lot of thought and discussion with my family and course mates, I decided to go back as an online student. It wasn’t ideal because of the lack of social interaction and how much harder it made cowriting sessions but I didn’t feel safe commuting to London to be in a building full of people from all over for just two hours a week. It just felt like too much anxiety for not enough reward. Online seemed like the most productive way forward. But even with that choice made, the process of going back to university, getting clear information, the correct timetable, etc, was incredibly stressful, causing meltdown after meltdown after meltdown. I really wasn’t at all sure whether I was going to be able manage university classes during a pandemic.
SEMESTER THREE OF MY MASTERS
The beginning of the semester was a bit rocky as the university tried to make blended classes (the online and onsite groups combined as one using Microsoft Teams) but in the end, it was simply easier and a more productive use of the time to split the onsite and online groups. My groups were great and everyone was really supportive and encouraging, tutors and students alike. Plus it was fun to work regularly with Richard again. The work was hard and the songwriting briefs difficult since musical language isn’t my strong point but after really positive meetings with both of my tutors, I never felt like I couldn’t ask for help or miss a brief if I needed to. As long as we was experimenting with our music – with the use of melody, harmony, arrangement, etc – and turned in the assessment work, everyone was pretty relaxed about what we were working on.
Despite a pretty heavy workload, I managed to get up to quite a lot during the semester. I celebrated my 26th birthday with the family I could and had a couple of socially distanced meet ups with friends; it was simple and quiet but I’m not really into big celebrations anyway. It would’ve been nice to see more of my family though.
I saw a lot of really awesome live-streamed shows, including Ingrid Andress at The Bluebird Cafe, various shows throughout the virtual Country Music Week and Nashville’s Tin Pan South Festival (I’m so grateful that we didn’t lose out on them entirely because of the pandemic), Halsey’s poetry book release day livestream, Maren Morris’ livestream concert, and Kalie Shorr’s charity StageIt show. But my personal highlights were Sugarland’s livestream show, Kalie’s ‘Unabridged For The First Time’ show (even though technical difficulties meant I missed bits of it), several of the Tin Pan South shows, and Tim Minchin’s ‘Apart Together’ livestream show.
I also attended several webinars and conferences about ASD and mental health, as well as actually speaking at one. That was a really special experience, being invited to speak on a panel and share my experience about being autistic. I felt like I was really able to use my experience to help other people and several of the attendees confirmed how useful my contributions had been. So that felt like a really significant moment.
Even though I was still on the course, many of my friends did the Masters in one year rather than two. They had a virtual graduation ceremony, which I attended in support. They all created such incredible work and under such difficult circumstances; I’m so proud of them and can’t wait to see what they go on to do. Some of them have already released really cool and interesting work and I know that many more are working on really cool projects. We had a celebratory drink via video call afterwards, which was good fun. I hadn’t seen a lot of them since March so I really enjoyed that.
I finally found somewhere to swim that actually felt safe, or as safe as possible: they had really strict safety measures. So I finally got to swim again and it was awesome. Each session gave me such a mental boost and it felt so good to exercise and really stretch my muscles again. I couldn’t get there as often as I would’ve liked (they spread the bookings out to keep the numbers low) but it was absolutely wonderful to be going again. It was erratic, especially with the second lockdown and most of the country now in Tier 4, but I enjoyed every second of it while I had it and I will again when the pool reopens.
The swimming was also good for the nerve pain in my back and leg. A few months earlier, I’d been diagnosed with hypermobility (very common with autistic individuals) and referred for hydrotherapy, which I’m unlikely to get for a while, but the swimming and basic exercises I’d been given did help. Or they seemed to anyway. I’ve also been referred to Rheumatology, Occupational Therapy, Pain Management, and had an MRI just to rule out anything unrelated to being hypermobile. It’s been a very slow process but I feel like we are starting to make progress, which feels really good.
The US Election was obviously a massive deal and not just in the US. I’m really glad that it fell during my reading week because there’s no way I would’ve been able to concentrate on classes. I’m honestly surprised by how much work I got done that week, given how much time I spent checking the news outlets for updates. In the end, it was Richard who texted me that the result was in. I shrieked, I laughed, and then I cried. I was so relieved.
Apart from swimming, the second lockdown didn’t change much for me. I was spending most of my time at my laptop, working on uni stuff. I had to turn in a portfolio of songs and an essay on the 4th January and, determined to get an actual break this year (unlike last year), I worked super hard: I wanted to have all of the work done before Christmas. So the end of the semester was intense and suddenly it was the last week, the session with Richard, and then the Christmas holidays. I worked every day from the end of the semester to Christmas Eve but I did manage to get all of the work done, which I was very proud of.
Christmas was weird. We obviously couldn’t see our larger family but then we couldn’t even see my brother because London went into Tier 4 (and then we went into Tier 4 on Boxing Day). I’d been prepared for a very different Christmas but it didn’t really emotionally hit me until a few days before and then I found it pretty difficult. We tried to embrace the difference: we decorated our tree with origami creations rather than our usual decorations; we structured our day differently… we kept it as different as we could so that the forced differences (like the lack of my brother) didn’t stick out so much. But we still managed to have a good day, I think. My brother and his partner had made a really great quiz, which we all had so much fun doing. That was definitely the high point for me. We were all together, laughing our heads off, and that felt really good.
I also just want to throw in here that there were some really great albums released in the fourth quarter of the year, which definitely boosted my spirits and inspired me a lot. There was Taylor Swift’s folklore: long pond studio sessions, which was both incredible and a fascinating look into the stories and emotions explored throughout the album; Kalie Shorr released the deluxe version of Open Book, Open Book: Unabridged, which included four new tracks, all of them as stunning as the original album tracks, if not even better – ugh, can you tell I love this album? And then, as if folklore wasn’t a big enough surprise, Taylor Swift released a second surprise album, evermore, which was another amazing album. The three of these, plus Manic by Halsey, were the musical highlights of my year. I love them all and I learned so much from them as a songwriter.
We’ve had a quiet few days up to new year, which is good. It’s been nice to have a bit more space to breathe, if that makes sense; there’s a bit less pressure in my life at the moment. Having said that, being in Tier 4 with a spike in COVID cases, has caused my anxiety to rise again.
And that’s the year…
So it’s time to talk about the music. With more content coming, I don’t want to go into too much detail; I kind of want to save the real round up for when everything is done, but I do want to do a quick review of my musical year because I think this is the first year where I’ve really felt like a professional singersongwriter. Of the five tracks on the Honest EP, all but one were released this year (the first single, ‘Bad Night,’ came out late last year). The second single, ‘Clarity,’ came out in early January with an accompanying music video; it did even better than ‘Bad Night’ and was even selected as BBC Sussex & BBC Surrey’s BBC Introducing Track of the Day. That was very cool!
I got to play a handful of gigs, all of which were so much fun. I headlined one of Indigo Eve’s nights, where people both waved their phone lights to a song and sang along to another. It was one of best gigs I’ve done and one of the best nights of the year. I played as part of my university’s songwriters’ circles, which is probably my favourite uni event; it was particularly special because it was the LGBTQ+ History Month special. That meant a lot to me and it was a great round. All of the performers were fantastic and the atmosphere was so positive. Looking back at my Instagram post about the show, I said, “I’m just on a joy train!” That was very accurate; it was a wonderful night. I was also invited to perform in the foyer of The Brighton Dome for their Access Open Day event; it was so much fun and I was giddy about the fact that I was performing there again when it was the first place I publicly performed. And before the lockdown started, I even managed a day in the studio, recording a fun project with some friends.
Everything slowed down when lockdown began but with a lot of help from Richard, we did eventually get the EP cycle moving again, starting with the release of ‘Clarity (Academic Remix)‘. A month or so later, the third single of the EP, ‘Sounds Like Hope,’ came out, followed by a music video beautifully animated by the lovely Lois de Silva. This one didn’t do as well as the previous two but it was a much slower, less radio friendly song so that wasn’t surprising. Having said that, it got some of the highest praise of the EP so although it didn’t reach as many people as the others, it seemed to really resonate with the people who did hear it.
The summer was a very exciting time, in terms of the EP. I got to ‘perform’ in the virtual Disability Pride Brighton Festival: they played the ‘Invisible‘ music video and it was streamed online and on TV! That was very cool: seeing myself on the television for the first time! Then, as I described earlier, Richard and I planned and filmed the music video for ‘Back To Life.’ I was very anxious about putting this one out, given its upbeat sound and title during the pandemic. But in the end, I decided that to leave it out would be to release an incomplete body of work, as the song is an important part of the EP. So I announced it with this message: “Given the difficult and often distressing times we’re currently experiencing, I seriously considered delaying the release of new music, especially as we reach the more upbeat songs on the EP. But I didn’t want to leave the story half told. This song represents the upward turn after a painful chapter of my mental health and it feels important to include because while there are brutal lows, there are also wondrous highs. They’re all important and all part of the journey.” (x) I released the song in August, hoping that people would understand that the title was metaphorical, rather than literal. It didn’t do quite as well as the others had but given everything, I wasn’t surprised. It may have done better in a world without the pandemic but then we’ll never know, will we? Richard edited the video – with my feedback at various stages – and despite it not being what I’d originally imagined, I absolutely loved it. I’m really proud of it, especially given the circumstances and stress under which it was made.
And then, in October, I released the fifth and final single of the Honest EP, the title track, ‘Honest.’ It’s my favourite song on the EP and putting the last of our budget into promoting it, it did really, really well – the best of the EP. I’m so proud of it: the song means so much to me. It felt fitting to have the music video show some of the weird and wonderful ‘behind the scenes’ of this EP process…
As I said, the project isn’t over yet so I don’t want to write anything that sounds like too much of a conclusion but I’ve learned so much from it, from this year. I’ve learned a lot, dealt with enough stress that it’s probably taken years off my life, and never been so proud of anything I’ve done. I can’t wait to share the rest in 2021…
This blog post spiralled into something much bigger than I thought it would. But then, given that ‘normal life’ sort of evaporated around us and everything was constantly changing, maybe it’s not that surprising. I guess, there were a lot of things I felt I couldn’t leave to assumption so I included them just to be sure. Hopefully it’s made sense and got you thinking (or not thinking) about your experience of this year. It’s weird, isn’t it: we’ve all gone through this massive, world-encompassing event together and yet our years will look quite different. It reminds me of a quote I saw on social media (that I will have to paraphrase, unable as I am now to find it): “We’re all on the same sea but we’re all in different boats.” So, yes, we all experienced a global pandemic but our personal situations created a spectrum of experiences, with either end looking nothing alike. But I think we can all say that we’ll always remember this year. I know I will.
Although I spent a lot of the year feeling very negative, feeling depressed or anxious or frustrated or angry, I’m actually finishing the year feeling overwhelmed by gratitude. Yes, I’m anxious about being in Tier 4 and the rising COVID numbers – I think it would be ignorant not to be – but I’m just so grateful for all the positive moments and experiences that I’ve had this year. And, of course, the people in my life. I could not have gotten through this year without them.
“I don’t even know how to fully sum up this last year. If I thought 2019 was difficult, 2020 was on a whole new level of emotional chaos. I’ve been in survival mode for most of it, just trying to wade through waters that kept rising and rising, and every time I thought I’d found my balance, another strong wave appeared to knock me down. It’s easily been the hardest year of my life and one I know I won’t ever forget. But as painful and terrifying and exhausting as this year has been, there have been some amazing moments too: pre-pandemic gigs, releasing my EP, the contact with my friends and family, time with my cats, the awesome music, movies, and TV shows I’ve discovered this year, the chances to swim… So despite all the negative emotions I’ve experienced this year (and continue to experience), I’m overwhelmed with gratitude for the good in my life. // There’s a blog post with all my ramblings via the link in my bio 💜” (x)
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Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.