Posted on June 27, 2021
This past month – this module – has been pretty all-consuming, not that I’m surprised as it is the final project of the Masters. This module is called the Major Repertoire Project where we research a particular topic (most commonly one we have a personal passion/connection/investment in) and use the research to write songs on the subject. I’ve been working on an autoethnographic project in the form of an album about my experience as a woman with Autism Spectrum Disorder. It’s a really exciting and fulfilling project to be working on but I won’t deny that it has dug up some hard stuff. And the timeframe does make it more than a bit stressful. But this module is why I wanted to do the Masters and despite the difficulties, it’s definitely been an interesting ride so far.
Other than that, there’s been a lot of other stuff going on, including my health stuff, travelling to London by train again for the first time, and getting my second vaccine!
The week in this post started on Monday 7th June and ended on Sunday 13th June.
I slept late, having swam hard in the pool the night before. I had an early Occupational Therapy appointment so I dragged myself out of bed and had a shower, only just ready in time for the video call. I was still out of breath when the call went through.
The call was somewhat frustrating because the connection wasn’t very good and we had to hang up and call back multiple times. That made it hard to have a real discussion and make any real progress. But we managed to talk about a few things: we talked about the hand exercises I’ve been doing; we talked about the swimming I’ve been doing and how my joints were responding to it; I told her about the ergonomic equipment that was due to arrive later in the week (it came through DSA, which I will talk about at some point because it was a very different experience to my previous DSA experiences); and we talked about the recent awful pain and instability in my right knee. We didn’t come to any conclusion on that and we’re still waiting on the physiotherapy referral; fortunately we live on the same street as a physiotherapist and she was able to give us some general advice. Plus, by the end of the call, we’d had a message from the dentist saying the consultation for my tooth extraction had been booked for Saturday – much quicker than I’d expected. So I was hopeful about that at least.
I ran through the exercises for my hands and then got back to work on my project, various childhood movies from Disney+ playing in the background as I worked. My focus for the day was researching special interests and how they present differently in girls and women. I know a lot about all of this already from my personal research but going through it again is good for both my final presentation and for the creation of the songs in this project. It can get a bit tedious at times, going over a lot of the same material but sometimes I’ll read something I’ve read before and see it with a completely new perspective or I’ll find something new that just gets my wheels turning. And then, suddenly, I’m halfway through a new song.
About mid-afternoon, I was really flagging, hungry and tired. I nearly fell asleep on my desk.
Somehow, I managed not to doze off; I moved around, got some food, and got back to work. I tidied up the research I’d done and then updated the journal we keep throughout the project: record what we do, what we learn, we critically analyse what we learn, write songs using the knowledge or inspiration we find, reflect on that process, etc. I was a few days behind in updating it but I’d mainly been working on the song ideas I’d slowly started pulling together the week before. These songs seem to be taking longer to write than usual; I think I’m just spending a lot of time turning over the core idea and making sure the weight of the song is in the right place – if that makes sense – before I start working out the exact narrative and arranging all of my lyrics ideas.
After several more hours of work, I called it a day on the work. I had a FaceTime call with one of my friends from uni and we caught up about our projects, about plans to actually hang out in person (although it would probably have to be a work-date with everything we have to do for our projects), and the Friends Reunion – we were even quoting in unison from the show by the end of the call. We probably looked and sounded ridiculous but we had a good laugh, something I think was good for both of us.
I spent the last few hours of the day working on the lyrics of a new song. I don’t often write love songs so that was a new experience for me, something that was really fun. It was actually really cathartic in a strange way, to write a song about a realistic, meaningful relationship, one that has ups and downs but that ultimately works because of the mutual commitment. It felt really good and I was really enjoying the process of writing it.
I went to bed at a reasonable time but then I accidentally stayed up reading until almost two am. That’s happening far too often at the moment. It’s not kind on my sleep schedule.
After the late night, I struggled up around eleven. I had a shower, an excellent breakfast of poffertjes and strawberries, and finished Avengers: Age of Ultron, which I’d started the night before. Oh, and I did my physio exercises.
I spent several hours doing background research – the foundational research, I guess. I know all of this stuff inside out but I need to be able to present it as part of my project; chances are the people assessing me won’t know even the basics about Autism, let alone that it presents differently in women and girls. So that wasn’t the most interesting research for this project but it was important to do so I did it.
That done, I worked on the song I’d been writing the day before. The rest of it came together pretty easily and I’m really happy with it. As I said, I don’t often write love songs so it was pretty exciting to feel like I’d done a good job when it’s not something I have much experience with. I particularly like how visual it is: the lyrics conjure different pictures and situations as well as the emotional weight of the relationship being described. Yeah… I’m really proud of it.
Early afternoon, I had an online meeting with my supervisor and module leader about my project – we get a set amount of time with our supervisors (specifically chosen based on the projects we proposed) over the course of the module and they provide advice, insight, etc. We had a good discussion and I got a lot of my questions answered – they’d been accumulating as I got further and further into my research and writing. So it was really helpful but by the time we wrapped up, I was tired and more than a bit overwhelmed.
I had a little break to check in with my social media. I’ve actually been using it a lot less recently; the potential for something to trigger my anxiety is just so high that I’ve been staying away from it for the most part. I don’t want anything to disrupt this project so I guess I’m just being extra careful right now.
I did some more research and then spent several hours trying to tidy up my laptop, deleting files and closing tabs and windows that I didn’t need anymore. I’m kind of terrible about leaving things open, just in case I need them again, but my computer was starting to sound very stressed out so I figured that I really needed to do something about it before my computer exploded… That took a somewhat ridiculous amount of time but the fan was significantly quieter when I was done.
I spent the evening watching What Happened To Monday (I love Noomi Rapace in this film – she plays each of the different septuplets so incredibly), updated my project journal, and had dinner. I actually managed to get to bed at a reasonable time but then I accidentally stressed myself when I let my brain wander down the wrong avenue. I needed my Mum to talk me down off the ledge but even then it was hard to get to sleep because it was so hot.
I was so deeply asleep that Mum had to wake me up; my alarm was going off but I was sleeping right through it. Waking up felt a bit like swimming up through treacle. Not the most enjoyable way to start the day.
After a shower and some breakfast, I worked on the chords for one of the songs I’ve been thinking about but not for long as I really needed to focus on preparing for my cowrite the next day which involved working on a different idea. So I got the idea down and went back to my laptop.
With the film, Close, on in the background (another great Noomi Rapace film), I ran through my physio exercises and then got to work on the prep for my cowrite. I had this idea to write a song about The Loneliest Whale so I started researching said whale and the factual information around it’s discovery, it’s signature call, and how it came to be called ‘The Loneliest Whale.’
No artist was listed with this illustration but it came from this article (x)
I was interrupted by my new ergonomic equipment being delivered, set up, and explained – thank you DSA and Posture People! I want to write about that whole process in a bit more detail but that really belongs in its own post. The two guys from Posture People were lovely and really well informed about the equipment they were setting up: they ran through everything in detail (but not so much detail that it was overwhelming) and they gave me time to test everything out to make sure I really understood how to make it work. The most exciting part was the beautiful ergonomic chair that they gave me. I’ve never had a comfortable desk chair – I’ve never been able to find one – and although it’s gonna take a while to adjust to sitting in a new position, I’m really excited to be able to sit at my desk and not feel really uncomfortable.
When they left, I went back to my research and collected quotes and phrases for inspiration. Then I went through those and wrote down the lyrical ideas that came to me as I read. Some of the ideas fitted together really clearly but I tried not to get ahead of myself since the song was supposed to be a cowrite.
In order to get into uni, we have to have tested negative for Covid less than twenty-four hours prior so I did a test and – hurray, hurray – it came back negative. Not that I thought I had it. But the negative result did mean that my plans could go ahead, I could see some of my friends, and I could do my cowrite so I was very pleased.
I spent the rest of the afternoon working on a blog post about special interests in Autism (and how it presents differently in girls and women). I figured that, since I had the research for my project, using it to write a blog post would be a win-win. I was momentarily – or not so momentarily as it turned out – pulled away from that when one of the cats got herself stuck in the attic and I had to tempt her down with Dreamies. Fortunately all of the cats become fairly dumb when the Dreamies come out. I was surrounded in seconds. Lucy didn’t immediately come flying out of the attic hatch but after I laid a trail of treats for her to follow, she did climb down and I was able to go back to writing.
One of my parents came over and we had a good catch up, which was really nice. I also showed her the ‘pivot’ blooper from the Friends reunion (which I absolutely loved) and we had a good laugh. She, having not seen it yet, laughed nearly until she cried. The three of them unable to stop laughing is just so funny.
We had dinner with Lucifer and I tried to catch up with my diary. I’m just permanently behind what with the Masters and it’s exhausting. It would be the ultimate relief to be caught up but I have no idea when that might be a possibility.
I went to bed early but then I had some lyric ideas for two of the songs I’ve been working on and that sort of snowballed until they were both nearly done. It was almost midnight so I stayed up a bit longer so I could send my friend a birthday message at the exact moment it became her birthday. That done, I curled up and went to sleep, with Friends on low for background noise.
I was up early, despite having woken up at four and struggled to get back to sleep. But I had things to do and places to be. I had a shower, got dressed, put on make up and jewellery; I had some breakfast and packed my bag before heading to the station to catch a train to London. It was around ten so it wasn’t super busy (although I did have to sit on the floor on the second train because I just couldn’t figure out where to sit that didn’t break social distancing rules – as much as possible on a train anyway). It was my first train journey in over a year and it was very surreal; it felt like a lifetime since I’d last been on a train and like the most normal thing in the world at the same time. I knew I didn’t have the energy to spare pondering that contradiction so I tried to just put it to one side and focus on the work I wanted to do. I was semi-successful, mostly because, with my mask, my glasses kept steaming up (yeah, I know, I still haven’t figured that one out) so I eventually abandoned them, ending up hunched over my computer in order to see the screen.
My second train (at least, the second train I’d planned to take) was cancelled. I can’t help feeling that there’s something kind of incomprehensible and yet somewhat comforting (although maybe not at that particular moment) that there was a global pandemic and the world basically turned upside down but Southern Rail is still as unreliable as always. Anyway. It was a complete faff to reroute and it made me horribly late but eventually – two trains later – I made it to uni. It wasn’t an enjoyable first train journey: talking on the phone to various friends and family did help my anxiety a bit but my knee was already killing me and it was going to be a long day. It’s been hurting for weeks now and I have an appointment with the onsite physio at my doctors’ surgery but it’s not for another two weeks so I’m not sure how I’m supposed to manage until then.
Fortunately my cowriter was very understanding and we had a really good – and fun – session; we laughed a lot, which was really nice. We didn’t have as much time as I would’ve liked but we built a strong foundation for the song with two verses and a chorus that I felt really good about. It obviously needs more work but it was a really solid start and I felt really positive about where it was going.
We had a class at two so we had to stop there. Even though we were at uni, it was an online class so we had to log in to attend – that was kind of funny, attending a uni class that wasn’t at uni while I was at uni. I don’t know if that makes any sense but I couldn’t help a wry smile. Anyway. Everyone in the group shared their project, where they were at with it, if they were having any problems, and so on; they all sound so fascinating. We’re going to have to have a week long listening session at the end of the module so that we can all hear each other’s work. It was a long class so it did get a little difficult to stay completely engaged throughout but, as I said, all of the projects are really interesting.
After the class, I desperately needed a break, having been concentrating (or, at the very least, trying to) for over four hours solid. I got to have a good hang out and catch up with my friend Luce, which was just what I needed, and we also got to see our friend Eddi who I certainly haven’t seen since before the pandemic, which was just so lovely and an unexpected gift. If there’s a bright side to being separated for so long, it’s the complete joy of being reunited – it’s a real celebration every time.
There was also an online song sharing that afternoon so Luce and I found an empty room and logged in. There were about ten of us, I think, including two of our part-time classmates who were also at uni, in another room in the building somewhere. Anyway. The session was really fun and inspiring. Since we have our supervisors (or each other one on one) for critique, the session is more about hyping each other up and offering creative ideas and just sharing our writing/project journey in a really positive, uncritical environment. So many of the songs were just SO GOOD. I mean, I thought every song was good because everyone has improved so much over the module and really got a sense of their songwriting identity, their strong points, their stylistic preferences, and so on, but some of the songs were just mind-blowing. The songs that Luce, my friend Joy, and my newer friend Shristi played particularly stick out in my mind as some of the best songs I’ve heard on the course (and definitely better than many of the songs I hear outside the course).
I played one of my newest songs, which was actually kind of terrifying because it’s not the kind of song I usually write and I really wasn’t sure how it was going to go over (I don’t mean to be intentionally cryptic – but I’m planning to release it, the song and this project, so I don’t want to spoil anything or, even worse, promise something and then not deliver). But everyone really, really liked it and were so enthusiastic and supportive, even picking out their favourite lines despite having heard it only once. It was a bit overwhelming but in a really lovely way. I really love this song and I’m so glad that people liked it and were responding to the emotion in it.
When the session ended, we packed up, said hi to our friends who’d been in the building, and headed off in our different directions. It was officially home-time; it was after seven and I still had a couple of hours of travel ahead of me. And, of course, my overground train was cancelled but with the low sun and fresh air, I was happy to sit and relax, especially after being inside all day; sometimes uni can feel a bit like a casino – the lack of clocks and windows at uni can make it really hard to tell how much time has passed, what time it is, etc. Days could’ve passed and you wouldn’t know.
Eventually, I managed to get moving and between talking to my parents (they all wanted to know how the day had gone and when there’s four of them, that can take a while!) and some project work, I managed to stay awake all of the way home. But after the long day and all the changing trains, my knee was excruciating; I could barely walk by the time I made it home.
Crashed out on the sofa, I inhaled a dinner of fish and chips (THE BEST fish and chips in the world, I might add) and half watched The Proposal – I love the movie but I was so tired that I could barely keep my eyes open.
I managed a barely coherent Instagram post before going to bed at eleven, exhausted and sore. I was asleep in minutes and slept like the dead.
I woke up with my alarm at eight thirty but I was so exhausted from the day before that I accidentally fell asleep again and slept until ten. I had a slight headache so I took some pills straight away before it could get worse. I had too many things to do to have my day derailed by a major headache or, worse, a migraine.
It took me a while to get up but I did eventually manage to drag myself out of bed and after a shower and breakfast, I got to work. I spent the next several hours working on stuff for my project; mostly, I caught up with the journal-like document that we keep both as a record of what we’ve done and as a place to reflect on what we’ve learned in our research, on the songs we’re writing, and the whole process that is the project. That’s the broad strokes: you can use it for whatever is helpful to your project but I guess that’s the basic scaffolding of it. I had rather a lot to catch up on, having had a busy but productive few days of project work.
When I eventually finished that, I took a break and had a quick scroll through my social media. The first thing I saw was that an interview I’d done a few months back had been published and shared…
I still find it a very surreal experience to be interviewed, and I’m not sure I’ve had an illustration of myself before! Surreal but very cool. So that’s out there and you can check it out via the link if you would to!
My social media also alerted to me the fact that the day before was the anniversary – the 5th anniversary – of Christina Grimmie’s death. I can’t believe it’s been five years. I really can’t. I’m still dealing with a level of cognitive dissonance, I guess. It just feels so wrong, like something that should not have been possible according to the laws of physics, even after all this time. I’ve written about her death before and I doubt there’s anything new to say – the facts haven’t changed – but I still struggle with it. I know I’d had a busy, stressful, painful day but I felt guilty for forgetting, for only remembering the next day when I was prompted by social media.
It was almost like Sooty knew I was getting upset because she suddenly appeared, hopped into my lap, and demanded that I put down my phone and pay her some attention. Loudly. So I put down my phone and we had a good cuddle. She wriggles and rolls and purrs like a train and it’s very soothing. And she definitely seems like she has a good time.
When Sooty resettled herself on my legs, I did some diary catch up and then some blog writing before trying to work on the song about The Loneliest Whale. I really tried but I was so tired and my head was starting to hurt so after a while, I just put on a movie and dozed on the sofa until one of my parents arrived for our weekly dinner and hang out.
We had a good catch up (even though we catch up practically every night) before having dinner with Lucifer. It was really nice and chilled out and probably just what I needed. But eventually she had to go. We said our goodbyes, had lots of hugs, and then, once she’d gone, I had another go at my whale song. I’m always more productive and creative at night (unfortunately for my neighbours) and I had actually managed to make some progress, which was very satisfying after the trouble I’d had earlier in the day.
I slept restlessly so getting up was a struggle. Oh, how I miss the days of a good sleep schedule…
I had a shower and some breakfast and then got to work at my computer. I did another clean up of my laptop, closing all the windows with research I didn’t need anymore before working one of the songs I’m currently working on. With this project, working on multiple songs at once, it’s a bit like spinning plates. It’s a challenge. But it’s a fun and satisfying challenge most of the time.
In the middle of the day, I had to go to the hospital for a dental assessment, the next step in the process of my upcoming tooth extraction. I really don’t know what the point of the appointment was: there was no new information in either direction, we had the exact same conversation as we had in the first appointment at my dentist, and all he did was refer me for the extraction (which seemed an unnecessary step since, as far as I could tell, I’d already been referred). The whole thing felt pointless and a waste of everybody’s time: for me it was annoying and I’m sure there had to be better things he could’ve been doing. And I still have no idea when the extraction might happen and if it will affect my Masters.
So that whole experience was frustrating and exhausting and then, when we got home, the pain in my knee was so bad that I physically couldn’t walk from the car to the house. I ended up sobbing in the street. My Mum had to all but carry me the rest of the way. It was horrible. But I had a rest and eventually managed to recover myself, enough at least to have another go at the song I’d been working on earlier in the day. And another one. What can I say? Spinning plates.
Early evening I realised I hadn’t posted the blog post I’d written so I put that up (it’s the one about living with unmedicated ADHD). Then my Mum and I had a light dinner, had a break to digest, and headed to the pool. I’m not sure if I’ve mentioned this before but, on Saturdays and Sundays, one of the local-ish pools have evening sessions that are very Autism-friendly. That’s not specifically their purpose but they’re very calm and soothing: quiet, low lighting, and only a few people. Plus they have super strict COVID regulations so I’ve always felt safe going there. It’s so nice. Those nights are usually high points in my week.
We swam and I worked hard, which felt really good. And the fact that my knee doesn’t hurt in the water, giving me a break from the pain, is definitely good for my mental and emotional state. Although, in a typically me move, I did have to get out in the middle to record a song idea in the changing room. I’m betting that if you’re a songwriter reading this, you’ve done something similar more than once too.
Back home, exhausted but buzzing with endorphins, I finished the lyrics to one song and worked on another. That was very satisfying. Then I went to bed, read for a bit, and went to sleep around half midnight.
I had an early start, caught up with my diary a bit, and then headed to the vaccination centre for my second vaccine. They were great – quick, efficient, and warm – and then I was out of there, fully vaccinated. That felt really, really good. The only negative to the experience was that my knee was so painful that I could barely walk on it; we managed to get a parking space close to the doors but just fifteen minutes on my feet was excruciating.
When I got home, I tried to work on the song I didn’t finish the night before. I found it difficult to concentrate but I kept trying all afternoon, all evening until dinner. While we were eating, we talked about the week ahead and what needed to be done for each day. I’m juggling a lot at the moment and while – most of the time – I feel like I can handle it, suddenly it all got on top of me and I got really stressed out and upset.
It took me quite a long time to recover and I didn’t really want to go out and interact with people, even if it was only a few of them at the pool. But I only get two opportunities a week to swim there – in that relatively stress-free environment – and I was loathe to give one of them up. So I dragged myself out of the house and over to the pool.
Again, I worked hard, which felt good. I can already feel the difference in my strength and stamina from when I started swimming consistently again after the last lockdown ended. My arm had started to ache post-vaccine but it wasn’t too bad; it didn’t affect my swimming (or anything else and it only lasted a few days unlike the two weeks of pain I had last time).
I crashed on the sofa when we got home, watched TV for a bit, and then I spent a little time working on song lyrics before going to bed.
Every week at the moment is different but the intensity is pretty consistent. My brain is constantly on a hamster wheel and while I love all of the stuff I’m working on, it’s pretty stressful and exhausting. And on that note, I just wanted to flag that I might not be as consistent about posting over the next two months or so. I’m not going anywhere – I have absolutely no intention of abandoning this blog – but I need to focus on this final project for the Masters and the two other research projects I’m working on. They have to be the priority for a little bit but then I will be back. I promise. I love this blog and I get so much out of writing it. And that’s not to say that I won’t post at all in that time; I just don’t think every week is going to be possible for a little bit. So, I hope you enjoyed this blog and I will see you in the not too distant future!
Category: about me, anxiety, autism, covid-19 pandemic, death, event, family, heds, medication, mental health, music, research, sleep, treatment, university, video, writing Tagged: a week in my life, adhd, anxiety, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic student, blog writing, cats, christina grimmie, coronavirus, covid test, covid vaccine, covid-19, covid-19 vaccine, cowriting, death, dental assessment, dental surgery, disabled student allowance, dsa, eds, ehlers danlos syndrome, energy levels, ergonomic equipment, exhaustion, family of cats, film, friends, friends reunion, heds, hypermobile ehlers danlos syndrome, interview, joint pain, journal, london, low energy, major repertoire project, masters degree, masters degree in songwriting, masters part time, mental illness, murder, my cats, occupational therapy, online class, online classes, pandemic, pandemic 2020, physiotherapy, public transport, research, singersongwriter, sleep, songwriting, special interests, swimming, the loneliest whale, tooth extraction, tv, university, vaccine
Posted on June 19, 2021
Since I’m in a one of the vulnerable groups, I have now had both of my Covid-19 vaccines! Yippee!
Back at the end of March, I had my first vaccine. I’ve had so many blood tests and procedures involving needles that the vaccine itself really didn’t phase me, not that I’m exactly a fan of being poked by pointing things. I was a bit nervous about what the side effects might be but being vaccinated was worth it, I had no doubt. The staff at the vaccination centre were kind and efficient; I was in and out in less than twenty minutes.
The only side effect I’m sure was connected to the vaccine was how tender my arm was afterwards. After the first vaccine, it was so sore that I could barely touch the injection site for two weeks. I slept terribly because I woke up every time I rolled onto that side and that arm. After two weeks, it finally disappeared.
I had several migraines in the month after, the first of which resulted in a trip to A&E to make sure I didn’t have the rare Astra Zeneca side effect of blood clots. I didn’t and it was just a migraine but then I had several more, much higher than my monthly average. I couldn’t and still can’t be sure that they were caused by the vaccine – due to the abscess in one of my teeth that was later diagnosed, which could’ve also been causing them – but I’ve never had that many migraines in such a short period of time.
Even having the one vaccine made me feel better, safer. I obviously didn’t stop wearing a mask or social distancing, but I just felt like I had that extra layer of protection. It made my anxiety (and sometimes panic) about going out just that bit smaller.
Middle of June and I got the text to go back for my second dose. I managed to book a slot within the week, which I was already impressed with, but then it was brought forward. Doubly impressed. Everyone at the vaccination centre was super efficient and really nice and again, I was in and out in less than twenty minutes. Again, I had the tenderness in my arm but it didn’t last nearly as long; it was gone within a few days. I did have a migraine a few days after but it only last for a day rather than the almost week long migraines I was suffering from before (although, as I said, it’s hard to determine what caused those with the tooth problem). And fingers crossed, that will be the only one. I had heard that people generally experienced fewer side effects after their second vaccine but I hadn’t wanted to put too much stock in it just in case I didn’t have the same experience; I didn’t want to set myself up to be disappointed or frustrated. But, almost a week on from the second dose, everything seems to be okay and within a couple of weeks, I will officially be fully vaccinated and as protected as I can be at this moment in time and that is a big relief.
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 syndrome, covid-19 pandemic, diagnosis, medication, mental health, treatment, trichotillomania, university Tagged: career, cfs, chronic fatigue, chronic fatigue syndrome, 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
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.