A Week In My Life (June 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.


MONDAY

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.


TUESDAY

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.


WEDNESDAY

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.’

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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.


THURSDAY

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.


FRIDAY

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.

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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.


SATURDAY

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.


SUNDAY

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!

A Day In My Life (University With Autism Spectrum Disorder)

As opposed to my usual week-in-the-life posts, I thought I’d do something slightly different this time and zoom in on what it’s like to be an autistic student at university (one doing an MA in COVID-19 times anyway). This is obviously just my experience – as the saying goes, ‘if you’ve met one autistic person, you’ve met one autistic person’ – but I thought it might be an interesting post to write. I feel like it’s so important to share our experiences as autistic people, especially when media is being created that can be harmful to us (i.e. everything that’s been going on with Sia’s new film – I feel like I should be writing about that but I still don’t know how to; it makes me so upset that I can’t really write anything that feels articulate enough to represent the significance of the issue). So I hope this is an interesting read.


THE NIGHT BEFORE

Monday was hugely busy, with a production session, two doctors appointments, and working on the essay of the module in the spaces between. I’ve been working on it somewhat steadily but since I have a feedback session coming up, I’ve been a bit more random in my approach to writing it – fitting writing time in wherever I can or just writing about certain things as they occur to me –  so that I can get as much out of that session as possible.

So it was one of those days where I barely had time to think.

On Monday evenings, the Masters course have a song sharing session between 7.30pm and 9.30pm. I’ve been a couple of times but I tend to find it too much. I’m most creative at night and so filling my head with new songs and song analysis right before I try to sleep really messes up my ability to sleep, which I have to try to do relatively early with my first class on a Tuesday at 9am. And if I don’t get enough sleep on a Monday night, I’m useless in every class on the one day I have classes. So, unless there’s a really good reason, I can’t really prioritise them.

I also find them quite hard socially: as much as doing the Masters course part time was the right thing for me, it has meant that for both years, I’ve never quite felt part of the group. There’s a handful of us in the same position and I can’t speak for them but it’s always left me feeling a bit ‘other,’ like I don’t really fit anywhere – not quite part of the group in the first year and even less part of the group in this second year. Everyone on the course is lovely but it does have a pretty big impact on the social side of the course. And when you struggle with feeling like you don’t fit in, it’s hard to feel it in yet another area of your life. So sometimes that factor just makes it too hard on my mental health. Maybe it will feel easier when one of my best friends rejoins the course in January.

So, instead, I used the time to do some more work on my essay before emailing everything required for the feedback session to my tutor (I wanted to make sure he had enough time to go through it all before we met on Wednesday afternoon). Then I tried to unwind a bit. Somehow I still ended up going to bed too late – not that 11pm is hugely late but for me, the night before a class, it’s on the border of being dangerously late.

I have a prescription for sleeping pills because my anti-depressants can cause problems with my sleep but I try to avoid them where I can. Having said that, knowing how exhausting a uni day can be, I usually take one the night before to make sure I’ve had enough sleep to give me the best chance of getting through said long uni day.


THE DAY ITSELF

I wouldn’t say I slept well and I struggled to get up but I’ve had worse nights so I just tried to push through the fatigue. I got dressed and made up and then collapsed on the sofa for a rest. Standing for the time it takes to shower, get dressed, and do my make up makes me feel weak, and lightheaded, and sick – something we’re still investigating with, unfortunately, very little progress – but getting up as early as I had meant that I did have enough time for some recovery time. It’s all down to planning. My life is dependent on planning. I also managed to eat some breakfast and take all of my pills. I’m taking quite a few at the moment – more than the ‘normal’ ones that help me maintain my mental health – because of a Vitamin D deficiency and horrible nerve pain down my left side (I’ve been waiting for a hospital appointment for the latter since about April or May, which may be my personal record for appointment waiting times).

My seminar started at nine (if you’ve read my previous university posts, you’ll remember that I’m doing all of my classes online this semester). My normal tutor (who is legitimately one of the loveliest people I’ve ever met) started the class before handing us over to a guest tutor who gave us a two hour class on arranging strings and horns. He was incredibly knowledgeable and engaging and so it was really interesting. Plus, Tiger came and sat with me for most of it, which was very nice. University with cats is a definite advantage of online lectures.

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I was struggling to concentrate by the end of the class so I was relieved when we wrapped up. It was a lot of knowledge and sensory information to try to process and sort through and digest. I felt more than a bit dazed. Fortunately, the session was recorded so I can either go back and listen to it in shorter sections or go back and search for something specific.

My next class wasn’t until five so I had rather a lot of time to fill. Pre-pandemic, I’d hang out at uni and do cowrites, go to the favourite local coffee shop with friends, or work on whatever was on the list at the time but I’m finding it much harder to use this time effectively, whether that’s due to having my classes online or down to the pandemic just really screwing with my brain. Stuff that wasn’t hard before is now and the only thing I can put it down to is the pandemic, even if I don’t know precisely why. All I know is that it’s a weird time and so it shouldn’t be surprising that certain things aren’t the same as they were before. But it’s still frustrating to have such a big block of time that I could be using productively and not have my brain cooperate. Early in the semester, I ended up staring at my laptop screen, desperately trying to work on stuff and just not being able to. I got more and more frustrated and demoralised and eventually I just had to accept that this is not productive time. So I’ve been trying to come up with ways to fill it that aren’t too demanding but still feel like there’s a point to them; I don’t want to feel like I’ve wasted it by just staring at my phone or mindlessly jumping between the open windows on my laptop because that’s just not good for my general mental health. So I’ve been trying things like reading or watching new movies or TV shows – these have been good sources of inspiration in a time where I’ve struggled to find inspiration – or having a nap if I need one… Things that don’t require a lot of energy but still feel worthwhile (most of the time).

I did a quick scroll through my social medias to see if there was anything that needed replying to and then did some admin work: replying to emails, updating my bullet journal, and so on. Just as I was about to move onto something else, I got a load of notifications from social media, all Taylor Swift announcing her acoustic concert film going up on Disney+, folklore: the long pond studio sessions. That was so exciting that it temporarily scrambled my brain, in both a good and a bad way. As an autistic person, I’m really not a fan of surprise drops because I just get hit by a tidal wave of emotions and I feel so overwhelmed that I actually feel sick. I don’t want to sound ungrateful for the film because I am so, so grateful for all that Taylor has been putting out during the pandemic (her work really has been one of the things that’s helped me during this time) but the suddenness with which she’s been announcing things has been difficult because that doesn’t give me enough time to do the emotional processing that I need to do. So although I eventually settled into being really excited, I spent a lot of the day feeling painfully twisted up and anxious over the mess of emotion I was experiencing.

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That did leave me floundering quite a bit, I have to confess. So, to try and take my mind off of everything I was feeling, my Mum and I caught up with the latest episode of His Dark Materials. It did help a bit. It’s such a great show; the casting, the acting, the sets, the interwoven storylines, etc are all so beautifully done. I loved the first series and I’m really enjoying the second one. I love Dafne Keen as Lyra (I so related to Lyra’s reaction to popcorn – it was freaking hilarious) and Amir Wilson as Will but I think it was Ruth Wilson as Marissa Coulter and Lin-Manuel Miranda as Lee Scoresby who really stole the show this week (pun actually not intended – if you know me, you’ll know I love a good pun). Their big scene together was just so powerful and how Ruth Wilson played the aftermath was particularly emotive.

I spent an hour or so working on a new blog post but after a while, I was just getting slower and slower and eventually I gave up and had a nap. I slept for about two hours before struggling up for my second class at five. I could’ve easily slept longer but I did my best to shake it off and concentrate on the workshop. This is where we (in this case, all of the 100% online students – the rest are blended and do the workshop in person onsite) share the songs we’ve been working on over the week and get feedback from the rest of the group. For most of the semester, we’ve had briefs each week but now we’re just working on whatever’s right for us. So, for example, I didn’t have a song to present because I’ve been working on the feedback for previous songs and the essay, rather than a new song (although I did recently write a rap, although I’m not sure whether I ever want anyone to hear it). Everyone else had songs to play though so I could still participate and give feedback, although I’m not sure how helpful I was because of how tired I was. But I tried. Some days I was just have less energy to work with than others.

I had an hour break before the evening session, which runs from seven to nine; they’re technically extra-curricular but I try to attend them when I can, especially now that they’re online and therefore more accessible. I don’t want to miss out on anything I don’t have to.

During my break, I had a quick dinner and catch up with my parents. The Grammy nominations had also been announced so I went through those. I’m super pleased for Taylor Swift: folklore is such a great album. Six nominations – Album of the Year, Song of the Year, Best Pop Solo Performance, Best Pop Duo/Group Performance, Best Pop Vocal Album, Best Song Written For Visual Media – is incredible and I’m really excited for her. Personally, I think she deserves at least several of those, especially considering the other nominees. I’m absolutely psyched for Ingrid Andress and her three nominations: Best New Artist, Best Country Song, and Best Country Album. I’ve been following her for years, having met her in Nashville at least a couple of years before her album was released. She’s an amazing writer and it would be just so awesome for her to win even one Grammy award this early in her career. But I’m concerned about her chances; she has some serious competition in all of those categories. The Best Country Song category, for example, is incredible, full of so many amazing songwriters that I love so much: Natalie Hemby (‘Bluebird’ by Miranda Lambert and ‘Crowded Table’ by The Highwomen, a group of which she’s a member), Maren Morris (‘The Bones’), and then Ingrid, of course. I want them all to win it. I was disappointed that Halsey still hasn’t been nominated. Manic is such an incredible album, as is Badlands (Live from Webster Hall), and it’s so frustrating that she doesn’t get the industry recognition she deserves. Especially given how popular ‘Without Me’ was, I’m really shocked that she’s never been nominated.

I just made it in time for the late session, which involved two of last years graduates presenting their final projects, one about using songwriting to explore different aspects of personality and the other about the experience of their gender transitioning and how sharing that story has the potential to increase understanding and empathy and break down barriers. They were both really cool projects but it was also massively helpful to see their processes, how they’d developed their ideas and researched them and how that research had lead them to writing the songs they wrote. It was fascinating and I definitely feel more prepared for my own project. I’ve got several ideas I’ve been turning over and the presentations have been helpful in my decision making process too. So I got a lot out of it, even if I was completely exhausted by the time the session finished.

It was about half nine and I probably could’ve gone straight to bed but I went and spent some time with my Mum, watching some TV together as we both wound down from the day. But it wasn’t long before we  were both falling asleep so we put the cats to bed (they sleep in the kitchen so that we’re not woken up at five – the time they start demanding breakfast) and headed to bed ourselves.


THE NEXT MORNING

I’m not one of sleeping in so I always set an alarm. Then I can get up and start doing things (I have a real problem with needing to be productive) but usually, the day after a uni day, I sleep through the alarms I set. It doesn’t seem to change anything though. I keep setting alarms and sleeping through them. But that morning was special. I dragged myself out of bed at eight to watch folklore: the long pond studio sessions, as soon as it was available. It wasn’t particularly enjoyable to get up when I was so exhausted but it was absolutely worth it. The film was amazing, so amazing that I still haven’t figured out how to put all my feelings into words yet.

Since this post is just about my day at uni, I won’t write much more but just as I wrote about the Monday night, I thought I’d write about the Wednesday morning. Usually there isn’t a brand new Taylor Swift film to watch so I try to rest and recover my energy – physical, mental, and emotional – from the day before. As I said, I’m struggling with this need to be productive all of the time so with that in mind, I try to schedule undemanding tasks for Wednesdays. That particular day, I had a couple of half hour tutorials with tutors, so I spent the morning making sure I was ready for those. I’d already made notes of what I want to ask and discuss so I spent the rest of the morning going through those to make sure I felt as prepared as possible.


So, as you can probably tell, it takes a lot of planning and prioritising and rationing of energy to make it possible for me to go (or at the moment, ‘go’) to university, to make it possible to live my life in the most positive and productive (to a healthy extent) way. This isn’t an unusual day for me. While stuff like big Taylor Swift announcements and the Grammy nominations don’t happen every day, there’s often something that can cause emotional reactions like the ones described and I deal with fatigue and anxiety everyday. It’s one big juggling act. Every day. One enormous, exhausting juggling act every day.

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

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

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


PRE-LOCKDOWN

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

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

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

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

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

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

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

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

SINCE LOCKDOWN

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

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

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

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

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

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

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

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


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