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 April 10, 2021
I love a good week-in-my-life post and I try to do one every semester or so, since that does tend to shake my life up. Now, the semester is coming to a close and the assessments are in sight so I’m busy with uni work, with cowrites, and with health stuff. There’s a lot to juggle right now.
The week in this post begins on Monday 15th March and ends on Sunday 21st March 2021. I’d thought I’d have this up on the blog earlier than this but when I was writing it, I wasn’t thinking about the timing and then there was Autism Awareness Week to post for. But here we are, just a bit later than planned.
I struggled to wake up with my alarm. My sleep isn’t great at the moment and my alarms really aren’t doing their job. Most of the time I’m sleeping through them completely, which isn’t exactly ideal.
For a moment, I forgot that it had been the Grammys the night before and then suddenly it came rushing back. I went online and found out who won what. I’m sad Ingrid Andress didn’t win any of the three she was nominated for, but I am glad that The Highwomen (Brandi Carlile, Natalie Hemby, Lori McKenna, and Maren Morris) won Best Country Song, although Maren Morris won’t get a Grammy since she wasn’t a writer on the song. And then there’s Taylor Swift. I’m so, so happy that she won Album of the Year for folklore. I think she deserved more than just the one award – I mean, how did she not win Best Pop Duo/Group Performance with ‘exile featuring bon iver’?! – but I do also think it’s a good thing when there’s no one person that walks away with five or six, meaning more artists/songwriters/producers/etc are being recognised for their work (I’m not saying the Grammys are fair – we know they’re problematic – but this is one aspect that makes them fairer).
I’m so happy for her, especially after everything she’s had to deal with with her masters and still working through the fall out of everything that happened/came to a head in 2016. And I know I’m biased but it’s pretty widely acknowledged what a big deal folklore was (and is); it was absolutely the album of 2020.
I was so busy catching up with the Grammys news that I was late for my online Occupational Therapy session. Fortunately my OT therapist understands my passion for music so she didn’t mind. We ran through my exercises and she wants me to do them for a little bit longer before moving on to a new set of exercises. Having fallen down the stairs at the weekend, she warned me to take things gently – to take a bit longer if that felt safer and more comfortable – and said that an injury, even to an unconnected area, could cause a general flare up of pain. So hurray for that. Everything hurt from the fall but I figured that that was due to the actual impact (well, multiple impacts) rather than anything chronic pain related. I haven’t been dealing with this – chronic pain – long enough to be able to predict stuff like flare ups. So we’ll just have to see things go.
And then we were done. The sessions are always exhausting, even if I’m not being asked to do much. So, before I could fall asleep on the sofa (it would not be the first time), I got up and recorded the new vocals for the song I was presenting in class the next day, ‘Last One Standing.’ I really love this song so I was really nervous to hear people’s feedback; I really wanted them to like it.
I finished that and, as predicted, I fell asleep on the sofa for a couple of hours.
I had a gentle rest of the day, doing various admin tasks before starting The One on Netflix. I was craving something new. I got into it really quickly, which was great – exactly what I wanted. I only stopped when 9pm rolled around and it was time for Unforgotten, a show my whole family has loved since it began airing. We all just love Nicola Walker and I particularly love her as Cassie Stuart. Having said that, I’m struggling with this series. I think the case they’re working is super interesting – maybe the most interesting one they’ve tackled – but with Cassie feeling so trapped and angry, it’s not as enjoyable as it has been in the past so I really that hope they’re heading towards a solution that brings some of her warmth back. (It’s safe to say that I wrote this before we saw the series finale.)
I was really stressing before class (we’re heading towards the assessment and I always get so anxious that I’m not doing enough) and somewhat frantically messaging with my friend. She suggested we have a a quick video chat before the class started and that really helped to ground me. Then we signed into our class.
We didn’t have our normal (awesome) tutor but we had another awesome tutor; I’ve had her as a tutor a handful of times since I first started at ICMP, on the BA, and she’s really great. Throw in the fact that we were presenting our ekphrasis songs (songs that were responses to other pieces of art, like visual art, films, etc) and it was a really interesting and thought provoking session. The brief had really stretched people and the songs were all so exciting and so different in the best possible way. I loved all of them.
I was last and VERY nervous because I was (and am) so attached to my song. Fortunately though, everyone really liked it and had some really great responses, some really interesting thoughts, and some good things to think about in the redrafting process. I was so happy with the positive response that I finished the class feeling like I was glowing. My first ‘glowy moment’ of the year – that’s what I used to call the really awesome moments. It’s been a really long time since I’ve felt like I had a reason to use the phrase.
I meant to have a nap between classes – that always makes it easier to concentrate in the second class, which is, after all, three hours long – but I accidentally ended up binge-watching The One. It’s so compelling and so thought-provoking, in so many different ways.
The seminar was on authenticity but having studied authenticity in song lyrics pretty extensively for my Musicology essay, it was all pretty familiar. So while it wasn’t too intellectually taxing, I was tired and it was hard to stay focussed. I didn’t mind three hour classes when I was actually in them but I do find three hour classes on Zoom a struggle.
When the class was over, I curled up on the sofa and finished The One; the last episode was just one mind-blowing revelation after another. It was so good. I found Rebecca a particularly fascinating character; there was so much to unravel. Both Hannah Ware (Rebecca Webb) and Zoë Tapper (Kate Saunders) deliver incredible performances and there’s so much potential for another series. Me and my friend, Luce, (who was an episode behind me) freaked out together when she finished it about an hour later.
I’m always exhausted on a Tuesday, even if I do manage a nap, and I was falling asleep on the sofa around ten. So I dragged myself up and headed for bed. That’s pretty early for me these days. I’ve been trying to get to bed earlier so that wasn’t the worst thing in the world.
I slept really badly but I didn’t sleep in. I was still in pain so I couldn’t get back to sleep anyway and at some point during the pandemic, I started feeling guilty if I slept in (this is super unhealthy, I know – I’m working on it in therapy) so I got up, had a shower and breakfast, and got to work. I did some uni stuff and then wrote down my thoughts to collect myself before a meeting with my course leader.
The meeting was about the final module of the Masters, which is called the Major Repertoire Project where we can research and create a body of work about anything we want. I know what I want to centre my project around (I’ll share soon but I want to get the current module done first) but you can take various approaches to the research and I wanted to talk to my course leader about that. We had a really in depth discussion and she gave me some really good ideas to think about. So I’ve got a lot to figure out but I’m really excited to get into it.
As good as the meeting was, I was really tired afterwards. I got comfortable and tried my best to concentrate on blog post writing. It took hours but eventually I managed to finish my blog post on being diagnosed with ADHD. At least I had a pretty good view while I worked.
Mid afternoon, I was supposed to have a phone call appointment with a neurologist. And I did, except they called two hours late, it wasn’t the person it was supposed to be, and then they basically spent twenty five minutes trying to convince my Mum and I that any tests they do as a department would probably be a waste of time and likely wouldn’t show anything. And that was it. The call ended and I just felt confused and upset. Isn’t the point of a doctor to help you, rather than convince you that trying to find an answer to your problems is a waste of everyone’s time? I mean, I was referred to the neurologist by my GP because she thought this was worth investigating. And then I finally get to see said neurologist after rescheduling and it felt like they were fobbing me off from the moment the call started. So, that was… yeah.
I was all over the place and Mum did her best to distract me. She’d seen bits of The One (although I’d managed to prevent her from seeing anything too spoiler-y) but she wanted to see the whole show so we started it again; she was hooked straight away, just like I was. As we watched, I started doing some basic research based on the Major Rep Project seeds that my course leader had planted in my brain; I didn’t get very far but it was definitely interesting and a good distraction from real life.
And then I went to bed, completely exhausted. It was barely ten thirty.
I struggled up with my early alarm but all of my careful planning for the day had fallen apart before ten am. I’d had two cowrites booked for the day but then one of them needed rearranging so I suddenly had to try and rearrange the whole day. I was majorly stressing that I was going to have to cancel on somebody but fortunately I was able to rework everything so that I could work with both people.
I had a shower and breakfast before finishing the lyrics to a song I’d been working on and speaking to Richard about the plans for the acoustic videos (the ones I’ve been releasing over the last few weeks). Then I worked on blog post stuff until it was time for my first cowrite. My friend, Anna, and I worked on a really cool song that she’d brought a draft of to the sessions and we were both so proud of it when finished. It has some really great metaphors and imagery and we tightened up this awesome outro that she’d proposed. I feel like we created something really special and that felt so good.
When we hung up, I had an hour to eat a really late lunch (and watch some more of The One with my Mum) before my second writing session, this time with my friend, Dan. He didn’t have a draft like Anna but we’d been messaging about what to write about: he’d sent me some themes, I proposed some more concrete ideas, and then he chose one that resonated for us to work on.
We decided to call it quits after a couple of hours and although we hadn’t finished the song we’d started, I feel like we’d made a really solid start on a really interesting song. I really liked what we’d come up with and Dan seemed to feel good about it too.
I feel like my writing has improved so much over the last few months and it felt particularly strong that day. I just felt like everything I was coming out with was good, not necessarily right for the song of the moment but still good. And that felt kind of amazing. Obviously not every day or every session is like that but every now and then it happens and it’s so, so satisfying; it gives you such a motivation boost. And remembering days like that one are really helpful on the days when it feels like everything you write is complete crap. So it was a good day, despite the stressful start, and I felt really positive about my writing and my friendships and my creative relationships and my course. It was a good day.
I was exhausted and starving by the time we finished but in a good way, in the way where you’ve worked really hard and you need to replenish, in the satisfying way. Mum and I finished The One with dinner and she was as blown away as I’d been. It was fun to have someone to talk about it and dissect it with; there are so many interesting and thought-provoking ideas in there.
Even though it was already late, I couldn’t help doing some more research into some of the ideas my course leader had suggested before forcibly reminding myself that that was not the time to be getting into complicated academic research, that I needed to disconnect and go to bed.
For the first time in a really long time, I slept super deeply and actually woke up feeling somewhat human and not a zombie.
After a quick shower and breakfast, my Mum and I headed down to the GP surgery for another set of blood tests. I’ve completely forgotten what they’re for or who requested them with so many people involved right now but apparently they might give us more insight into my fatigue. The nurse was lovely and the whole thing was super quick and efficient.
Back home, I did some work for uni and typed up my notes from my meeting with my course leader, including some of the resources I’d started to find the night before. I wanted to get it all down before I started to forget things. This project feels so huge right now – I’m sure it will start to feel more manageable and achievable once I’m actually working on it and not just thinking about it in broad strokes – so I don’t know what I’m going to need to remember at this point.
I worked up until my therapy session, which are still online at this point. I’ve said it before but I’ll say it again: in person is better and, personally, I find it more helpful but I’m grateful to still have access to therapy at all so I’m not complaining. Since I’ve been in a better place, we talked about that and what’s contributed to that. I told her about my first glowy moment – the first one in so long – and she was so excited so we enthused about that together. But we also talked about how difficult I’ve been finding it to start on the assessment work; maybe it’s my anxiety around assessments, maybe it’s the untreated ADHD, maybe it’s a combination of both. It’s also just irritating to have to focus on the paperwork side of things when I just want to keep writing madly.
It was an okay session. Between all of the pandemic stuff and having sessions online, I find it hard to get into things deeply enough to really move forward. So mostly it’s been about coping, which is necessary but also really frustrating. It’s felt like a year of treading water when I’m just so desperate to make some progress, of any kind.
I spent the afternoon doing various admin, like emails and so on, and more uni work. And then, early evening, I uploaded the first of the acoustic session videos. Working with Sunburst Sessions (back in February 2020), we’d made a video for each track of the Honest EP but I obviously hadn’t finished releasing the EP at that point, hence why they’re only coming out now. I’m going in order of the EP tracklist so the first one up was ‘Bad Night.’
The video up and shared to all of my social media and WhatsApp groups etc, I had a long catch up on FaceTime with one of my parents before having dinner with my Mum. It was pretty late by that point and we were both tired so we watched a couple of episodes of Episodes (it’s one of our comfort shows – it’s not emotionally heavy and both Tamsin Greig and Stephen Mangan are brilliant).
I’m still sore from falling down the stairs so Mum gave me a massage (I’m so freaking lucky to have a massage therapist for a mother) and then we both headed to bed.
I was awake on and off throughout the night and I was wide awake between four and six am. Ugh. And then, of course, I fell into a really deep sleep that was a really struggle to wake up from. And because I’d slept later than usual – later than I usually start taking my current daily painkillers – I was in so much pain that I could barely move. I had to eat and wait for them to kick in before I could manage a shower. So… not the best start to the morning.
When I finally made it to the living room, Mum and I did the Census and then I logged into the blog and posted my International Day of Happiness post.
I spent the rest of the morning working through the feedback I’d received on my songs from this semester, which made the task of choosing songs for the assessment portfolio much more straightforward: I don’t think any of the songs I’ve presented are bad but there were some obvious standouts, all of which were actually in line with my gut instinct about what to submit. I just needed to work on them, based on the feedback, and then pull the paperwork together: the various drafts, the feedback, my notes, etc.
Early afternoon I had a writing session with my friend, Phill, but we ended up deciding that we’d gotten as far as we could online and so we’re gonna continue working on the song when we can meet up in person. We’re just having trouble with the lag time. I’m happy to do that and although that was the writing session effectively over, we stayed on the video call and just had a really fun and chilled out chat, which was really nice. Because socialising has to be so organised now, I’ve definitely found myself having fewer spontaneous and casual chats with people and I’ve missed that. So it was a really nice few hours.
After we hung up, I had some chill time. I was having a quick scroll through Instagram when I saw that Natalie Hemby, a songwriter I really admire, had posted about Travis Meadows, another songwriter I really admire, and how he’s been through A LOT recently…
I love Travis Meadows and his music so I went straight to the gofundme page. The video he’d made the week before, sharing for himself what had happened, was incredibly moving. I donated what I could and shared the fundraiser on all of my socials. (The fundraiser has since met its goal but is still open – I’m sure the hospital bills, past and ongoing, are much more than the original goal set.)
One of my parents came over for a bubble dinner and we watched Lucifer together and then I watched my friend Luce‘s online show. She played some great covers and acoustic versions of the songs she’s already released but she also played some new songs and they were incredible. They were so powerful. I can’t wait for everyone to hear what she’s working on because it’s truly amazing.
When her show finished, I had a couple of FaceTime calls with various family members and then went to bed. It was still really early – not even ten thirty – but I was exhausted.
I didn’t wake up until half nine and when I opened my eyes, I found three of the five cats watching me. Clearly it was long past breakfast time and they were impatiently waiting for me to deliver. So I dragged myself up, fed the clamouring masses (this is sarcasm just in case you couldn’t tell – I adore them), and had a shower, before settling in the living room.
I ate breakfast in front of the Netflix short Creating The Queen’s Gambit. I loved it, loved seeing how the whole thing came together, from the really obvious creative choices (like Beth’s hair and the sets) to the tiniest of details (like the interactions between the characters); it just made me want to watch the show again but I just don’t have the time right now. I would want to pay attention to all of those details and right now I have too much to do; the TV is pretty much just there for background noise at the moment.
I spent the morning working on my notes for my assessment portfolio. I was due to have a cowrite in the afternoon but then that got rescheduled to the next day. But I made use of the time: I spent several hours working on a research proposal for a Musicology conference. I’d absolutely love to present at this conference, so much so that it’s probably making me super perfectionistic about it. So I’m trying – I really am – to dial that back so that I can actually write the damn proposal. Because if I don’t write the proposal, I definitely don’t get to present at the conference.
After a few hours on that, I went back to my portfolio notes. It wasn’t a particularly interesting day but it was busy. I got a lot done.
Then, in the evening, I had another bubble dinner: pizza, Lucifer, and catching up. It was really nice. I couldn’t totally relax – I did a bit more uni work and some writing for various blog posts – but I had a really good evening. And then I went to bed early, completely knackered.
So it was a super busy week. But that’s not exactly new. I’ve been battling all semester with the danger of burning myself out before the assessment. I know that I really need to manage myself better. It’s just that sometimes my enthusiasm gets the better of me, especially when it comes to music things.
As I post this, classes have ended and the assessment deadline is coming up so I really need to concentrate on that. I just wish concentrating was easier. The practical work I don’t seem to have a problem with but the analysis – an essay that’s not really an essay – has me banging my head against my desk. It’s such a simple, straightforward task and yet I’m finding it so difficult. And on that note, I’m going to post this and go and work on it. Because there’s a hundred and one more things to do after I do that.
Category: adhd, animals, anxiety, autism, covid-19 pandemic, emotions, heds, mental health, music, sleep, therapy, university, video, writing Tagged: a week in my life, acoustic sessions, adhd, assessment, attention deficit hyperactivity disorder, blog writing, blogging, blood test, cat, cats, chronic fatigue, chronic pain, conference, coronavirus, covid-19, cowriting, cowriting session, creating the queen's gambit, dbt, dialectical behaviour therapy, ekphrasis, episodes, facetime, family, family of cats, folklore, friend, friends, glowy moment, grammys 2021, heds, honest ep, honest ep (sunburst sessions), hypermobile ehlers danlos syndrome, luce, major repertoire project, march 2021, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, musicology conference, my cats, natalie hemby, neurologist, nicola walker, occupational therapy, online classes, online concert, online learning, online university, pain, pandemic, pandemic 2020, pandemic anxiety, part time masters student, perfectionism, perfectionist, remote therapy, remote writing session, research conference, research proposal, seminar, singersongwriter, sleep, songwriter, songwriting, sunburst sessions, taylor swift, the highwomen, the one, the one netflix, the queen's gambit, therapy, travis meadows, unforgotten, university, university assessment, week in my life, writing session
Posted on February 20, 2021
It’s a whole new year, a whole new semester… and a whole new lockdown. So I guess it seemed as good a time as any to do another of these week-in-my-life posts. A lot has been going on recently so I thought it might be a good week to document, as much for myself as for anyone else; it’s all been a lot to process and I thought this might help with that.
The week in this post began on Monday 1st February and ended on Sunday 7th February 2021.
I usually like to keep Mondays gentle, given that Tuesday is a long day with my uni classes but this Monday was different. I struggled up (I’m naturally a morning person but between my medication and the pandemic, I’m just tired all the time, which makes getting up in the morning a real battle), had a shower, and managed a bit of breakfast before my first official Occupational Therapy session – I’ve had a consultation but this was the first ‘practical’ session, I guess you could call it.
There were still a lot of questions – all the hows and whens and so ons around the pain in my hands – but the therapist also taught me a series of exercises that I should do daily and how they would help with my pain. She also explained how it all linked in with my hypermobility. So it was really helpful and an encouraging step forward after feeling stuck for so long but despite how little I had to do each day, the exercises caused more pain. I’ve been trying to continue with them as the therapist did say that that could happen but it’s hard to motivate yourself to put yourself through pain. I will have had another appointment by the time this goes up so hopefully I’ll have had some advice on this.
She also had some recommendations on private pools that we could book since swimming is the only real exercise I can do, for the lockdown specifically but also to use until the Hydrotherapy referral comes through. She’d also double checked the Pain Management referral to find that it hadn’t reached the department and so pushed it through personally – apparently, because the pain is impeding my education that puts me further up the list than I might’ve been otherwise. So that was all good but the appointment was pretty exhausting. I actually fell asleep for a couple of hours afterwards.
I woke up suddenly and realised I was ten minutes late for my cowriting session with Richard. That startled me awake, I can tell you that. I scrambled up and logged into Zoom. We had a really good session, finishing a song we’d started the previous week, ‘One More Time.’ I really like it and I’ve been singing it, the chorus especially, ever since we wrote it. It’s one of my favourite songs I/we’ve written recently.
With the demo finished, we talked about the upcoming projects we’re working on, alone and together, for our Masters and for our own projects. That was productive as well, although the creating is always my favourite part of any session.
Several of the cats had been hanging out with me the whole time (I think we were on the call for about four hours in total) and they were being ridiculously adorable. Mouse in particular looked very content with the situation. Having them around all of the time is one of the things that has made this last year bearable; I’m beyond grateful for them.
I was exhausted after that and curled up on the sofa with Criminal Minds. I’ve been rewatching it over the last few weeks and I’d forgotten how much I love it, how much I love the characters; I think Emily Prentiss was one of my first Favourites with a capital F TV show characters.
My mind was wandering and I was thinking about one of my current song ideas, one that hasn’t fully revealed itself to me yet, when the perfect hook popped into my head. Unfortunately, before I could even reach for something in order to record it, it was gone. It was infuriating. I must’ve sat there for an hour, retracing every train of thought I could remember having before the hook occurred to me but alas, I couldn’t get it back. And now, of course, I’m convinced it was the perfect idea: just what I needed to make the song work. So that was very frustrating, which didn’t help with how overwhelmed and stressed I’d been feeling over the previous few days. Part of that was due to the results of the last module being released a few days before. I’m often slow to open results – I like to wait for a moment when I’m feeling stable enough to handle a good or a bad result – but I also had three cowrites and a day of classes in the following days so I didn’t want my emotions about the grade to affect those. That said, I couldn’t forget about them completely and the not knowing was stressful.
Eventually I gave up on trying to conjure back up that perfect hook (*sigh*) and did some writing for the blog. I even managed to finish the post I’d been writing about Lucky. That was a hard one to write so I was glad to have it done.
Mum and I had dinner together and then we had a family video chat, one that specifically included my Granny in Australia because it was her birthday. Since it was a milestone birthday, at the very least some of us would’ve been out there to celebrate with her if not for the pandemic, something that’s been hard for all of us but especially the one of my four parents who’s her daughter. So it was hard, but having a video chat was better than nothing and I think we made the most of it.
After we hung up, Mum and I had a gentle evening, continuing with our Criminal Minds rewatch. I also tried to do some catching up with my diary. I’m so far behind now that it’s more like keeping up: I’m just barely managing to keep bullet points as prompts for some imaginary moment in the future when I have the time to go back and write it all out. I’m finding that incredibly stressful because the need to write everything down is only being partially fulfilled, leaving me with so much anxiety that sometimes I’m left feeling suffocated. But that anxiety is constantly battling with the anxieties of other things that HAVE to get done, like my Masters work. There just aren’t enough hours in the day. Plus, a lot of the time, I feel like my brain is wading through treacle, making it even harder to function. My brain feels a bit like it’s been hit by a hurricane; it’s just a chaotic mess and nothing’s where it’s supposed to be or doing what it’s supposed to do.
I went to bed early-ish, early for me anyway, but then I accidentally stayed up for several hours, watching videos on YouTube. One of the upcoming writing briefs for this module is to write a song based on a fictional story and I’ve wanted to write a song about Daisy Johnson from Agents of SHIELD forever so this seems like a good opportunity; maybe a deadline is what I need to make it happen. So watching all of these Daisy Johnson videos on YouTube and listening to the songs that people associate with her is research of sorts. I’m still trying to work out the perspective I want to write the song from, whether it’s about a particular moment in time, or about her emotional journey, but I found several songs that definitely have potential as inspiration. It didn’t exactly help my brain wind down though.
I managed to sleep through all of my alarms, which meant that I was almost an hour behind in getting ready for the day – my uni classes day. So I had one of the fastest showers of my life, put on minimum make up, and inhaled some breakfast, logging on just in time for my first class. Definitely not the most fun or graceful start to a day.
My first class of the day was our workshop, where we present the songs we’ve written based on the techniques we learned in the seminar the previous week. Due to a meltdown, I’d actually missed the seminar, which had been on the techniques of song maps and pyramiding, but after reading the resources and a long discussion with one of my friends who’d been at the seminar, I felt I understood the theory enough to at least attempt to apply it. I’d written one song with Richard and another with one of my coursemates, both of which I really loved. There was only time for one of them, given how many people had brought songs (some days, everyone brings a song and we have to be really efficient whereas on others days, some people haven’t brought a song and there’s more time and people can present both cowrites and songs for their own projects), and the cowrite with my coursemate got chosen. It was well received with a healthy amount of suggestions for improvement, some of which we agreed with and some we didn’t. We’re planning to work on it again soon, since one of the upcoming briefs is to redraft a song.
There were some other really cool songs played during the session but I don’t want to say too much about them since they’re part of other people’s projects. Having said that, my group is packed full of amazing writers so whenever they release music, I’ll be sure to share it on my social media. So check those out if you want to hear about these awesome up and coming artists and writers…
It was a good class but then we had a four hour break before the seminar in the afternoon, starting at 4pm. Tuesdays are hard for me: they’re long and they require a lot of energy and focus, especially the three hour seminar. So I’ve taken to using the break to have a nap to recharge for that class. I slept for almost three hours, had some food, and quickly recapped the notes from the last seminar before we got started again.
We began by discussing what we’d worked on over the previous week – song mapping and pyramiding – and talked about how we’d implemented songs maps into our work, what impact it had had on our writing process, and what we’d struggled with. Having missed the seminar where song maps had been introduced, I’d struggled initially but having incorporated it in the writing of several songs, I do feel like I’m getting more of a feel for it. We had some interesting (and, at points, entertaining) debates over various elements before moving into the new topic: different approaches to cowriting. In groups, we were encouraged to just talk until one of us said something that might make an interesting song and then start writing that song together.
I’d initially been worried about being dropped into a group of people I didn’t know and asked to create something so I’d spoken to my tutor and we’d worked out a solution that I’d be in a group with at least one person I knew. I’m always keen to write with new people but, being autistic, it’s a lot easier and a much more positive and productive experience if I have, at the very least, spoken to them beforehand. So having one person I already knew just created a safety net in case I got overwhelmed or something. I actually knew two people in my group and then there was another guy I hadn’t previously met; we got on really well with lots of laughing and goofing around but we also came up with a really strong concept and started working on the song. So we did pretty well, I think.
When the class ended, at 7pm, I was exhausted but the nap had helped. I wasn’t completely floored like I often am. I even managed to work on a song I’m currently writing, one called, ‘Astronaut.’ I’m usually barely capable of eating dinner and catching up with my diary so that was quite an achievement. The nap had clearly worked wonders.
There wasn’t much left of the evening but my Mum and I had dinner and continued our Criminal Minds rewatch. I also worked on a couple of blog posts before going to bed far too late, as is my norm at the moment. I just get this weird anxiety when I start getting ready for bed. Maybe it’s to do with anxiety about being unable to sleep, maybe it’s anxiety about a period of unproductive time (that’s something I’m struggling with at the moment)… I don’t know. And it just makes it even harder to get to sleep.
It took me a long time to wake up on Wednesday morning; I just couldn’t open my eyes. I feel like I’m having more and more trouble with mornings; my antidepressants are very sedating, which is one of the reasons I’ve been thinking a lot about trying a new medication. It’s just such a tough process and there never seems to be a good time.
When I eventually managed to keep my eyes open for longer than a minute, I forced myself up and had a shower before settling at my desk in the living room. With Criminal Minds as a backdrop, I spent several hours working on blog posts. I struggled to concentrate though because, in the back of my mind, I was aware of the fact that last module’s grades were still waiting to be opened. They’d come out the week before but I’d had three cowrites and a day of classes ahead of me and if the grades were bad, I didn’t know how I’d manage to be present and productive in those sessions. So they were still sitting there, unopened, and I was very aware that I really should open them and look. But it was really hard to make myself do it.
Eventually I did, when Mum went out to do the food shop. It’s not that I didn’t want her to know or anything; I just find it easier to see results, have my initial emotional reaction in private, and process it a bit before sharing the news with people. I was happy with the grade – for the most part (but then I’m a perfectionist and always somewhat disappointed if I don’t do exceptionally, something I think is an unfortunate consequence of being a really high achiever at a young age) – but I did have some issues with the feedback. Reading through the feedback sections, I felt like we hadn’t been assessed on what we’d been told we’d be assessed on. The more I thought about it, the more upset I got. I’d worked so hard and talked to the tutors so many times in order to get a clear pictures of the module and how it was assessed and then to see feedback that felt fairly unrelated to what I’d been told was actually really distressing. I guess I felt (and feel) like I would’ve done things differently if I’d known the type of feedback the work would receive. I’d worked so hard on my assessment submissions so that was just quite deflating.
I talked about it a lot with my Mum and after that, I was just exhausted. So I put on some Criminal Minds and spent most of the day working on blog posts. Or trying to, at least. Wednesdays are always my least productive days, like my brain and body borrow from Wednesday to get through Tuesday, leaving Wednesdays significantly depleted of… just everything. So I always try to avoid putting anything important on a Wednesday.
So a gentle afternoon turned into a gentle evening, watching Criminal Minds and writing for the blog in front of the fire. The cats love it when we have a fire. They all congregate in the living room and spread out in front of it, occasionally rolling over – ever so casually – to warm a different side of their bodies. It’s adorable.
I managed to go to bed at a reasonable time, watched some more Daisy Johnson videos, and was actually asleep before midnight.
I had to get up painfully early to go to the dentist (my dentist is a safety hub, which apparently means they can be open during lockdowns because they look after people with disabilities, although I didn’t know this until fairly recently), which wasn’t a pleasant experience. They have really strict safety procedures (the only reason that I feel safe going there), like an hour between each patient to sterilise the room and so on, so it takes a long time to get an appointment. Unaware of the fact that I could go to my dentist until a few months ago, it’d been a long time since I’d had a check up and so there was quite a lot to do. I’m not gonna go into detail because I don’t think anyone enjoys descriptions of dental work but it was a difficult experience, moreso than usual. I find the noises of the machines particularly difficult and in excess, they get dangerously close to triggering a meltdown, so by the time the appointment was finished, I was completely exhausted.
Back home, I finally managed to get through the Occupational Therapy paperwork and start doing the exercises for the pain in my hands and wrists. Despite the simplicity of the movements, it was hard work and every joint from my fingertips to my elbows hurt afterwards. I made a note of it to report back to the therapist – I had another appointment in a week – and took some painkillers that eventually took the edge off.
It wasn’t long before my next appointment, by phone this time with the Chronic Fatigue Service, so I lay on the sofa and watched Criminal Minds for a little bit while I recharged and gathered my thoughts for the call. I was already apprehensive about the call as it was a doctor I’d previously had a really bad experience with – one I’m tempted to go as far as saying was traumatic. It was a long time ago now but I was still anxious about the whole thing.
It turned out to be exhausting, upsetting, and a complete waste of time. He had very little of my history so most of the hour was spent taking a very extensive history, involving questions ranging from my parents health to my diet to my mental health diagnoses to my medication. And after all of that, he basically said that my case was too complicated for them, that with the more recent diagnoses – including the hypermobility diagnosis – I was better off with my current specialist. What may have previously been perceived to be Chronic Fatigue Syndrome might actually be Persistent Fatigue associated with hypermobility but it’s hard to be sure. But not only did we hang up with less clarity than when we started the call, the whole thing was just… unpleasant and awful; he claimed that I’d been diagnosed with CFS in 2007 by a doctor I don’t even remember seeing according to a letter that neither my Mum nor I remember getting; he was critical of how much Red Bull I drink (due to the sedating effect of my medication as far as I can tell) and acted like I was doing it for fun, not because it’s the only thing that keeps me awake and functioning; he talked about a set of blood tests that were never discussed with us, which was particularly alarming as one of the results could’ve indicated cancer… And on and on. It was a complete fiasco. Every time I think things can’t get worse with doctors, they do. I could’ve had cancer and no one ever even bothered to mention it. I mean… I don’t have any words.
So that was basically the day written off. I was just too distressed and too exhausted. There was an extracurricular uni session in the evening but I was just too tired. I knew I wouldn’t be able to focus and it would be recorded so I could always catch up later. Instead I spent the evening watching Criminal Minds and very, very slowly adding to some blog posts. I did get some exciting music news but unfortunately I can’t share that yet. So the day did end on a better note.
There’s no particular reason to include this picture other than the fact that I thought it was adorable: cat yoga on a piano.
I went to bed early, watched a few more Daisy Johnson videos (at the moment it feels like the only time I feel able to take the time to watch YouTube videos is right before bed or before I get up in the morning), and eventually went to sleep.
I got to sleep in a little bit and then it was up and out to the hospital for an ECG (echocardiogram). Since a small amount of people with hypermobility develop heart problems, I’ll have to have ECGs every five years or so to make sure everything’s okay. I wasn’t too worried about it but again, it was another distressing medical experience.
I’ve had an electrocardiogram before and just like that, you’re asked to undress so that the ultrasound wand can get a good image of every necessary angle of your heart. But I just couldn’t do that: the idea of being so exposed in front of people I didn’t know was and is nightmarish to me. I don’t know if that’s an ASD thing or or me thing or what. They looked at me for what felt like ages before reluctantly allowing me to keep my bra on, telling me that they likely wouldn’t get as good images. I was trying not to lose it completely so, as you can imagine, that was a super helpful comment. And then, to make matters worse, the doctor pressed the wand against my chest so hard that it physically hurt; part of me wondered whether it was a punishment for being ‘difficult.’ I couldn’t breathe properly and it hurt so much that I was almost crying, especially when she pressed it against my sternum.
When it was finally over, my Mum asked if they’d gotten what they needed and they said that they had. So much for my bra being an issue. When I was fully dressed, Mum asked me to wait outside; she was five minutes maybe and then we were out of there. She told me that she’d just done what she normally ends up needing to do with medical professionals and explain how important the language they use with autistic patients is (because, as usual, they didn’t know how to work with an autistic individual). So, for example, instead of saying they probably wouldn’t get the pictures and therefore making me feel guilty for my anxieties, they could’ve said that they could try and then, if they couldn’t get the pictures, we could all re-evaluate together, which would’ve made me feel like they were at least trying to work with me rather than dismissing my difficulties. Apparently they thanked her for sharing her experience and said that they would take it on board; whether they will, I can’t say.
The whole experience had been distressing and exhausting and I was barely holding it together. I just wanted to get home and curl up under a blanket in the safe little bubble that is my living room, curtains closed and fairy lights on. So that’s what I did. I attempted some blog writing but it was very half hearted; I was just really drained by the experience at the hospital.
Early afternoon, I had a therapy session. It was probably too much on top of the ECG experience but then I hadn’t expected that to be so dramatic and emotional. Again, I’m drawn towards the word traumatic but I guess I’m reluctant to call it that as just a person and not a mental health professional. Had it just been the one time, I wouldn’t think to call it a trauma – I’d call it distressing or deeply upsetting – but as the latest in a long line of deeply distressing experiences at the hands of medical professionals or in medical settings, it feels like it’s bigger than that, that those experiences have built up to create a big ball of trauma.
It wasn’t easy but somehow I managed to pull myself together enough for my therapy session. A lot had happened since my last session so there was a lot of catching up and processing, most especially about the medical stuff that’s been going on. It was really hard, both in the sense that it took a lot of energy to talk about it all and in that it kicked up a lot of emotions. It’s weird: it’s like I’ve been boxing it all up and hiding it under the bed for years and suddenly, the recent appointments have just kicked the lid off and I can’t get it all back in, like when you have to sit on a suitcase in order to zip it closed. So now all those emotions are just everywhere and I can’t move without tripping over one or another of them.
We finished up the session but I knew that if I stopped, I was really going to crash so I did some prep work for a cowrite I had the next day; I really don’t like going into cowrites without anything prepared, even if it’s just a list of relevant words or phrases. Since we ended up writing about something completely different, I think it’s probably fine to talk about the song we were planning to write: we’d been talking about our personal concepts of time and how time feels different since the pandemic began. So that was our concept but we needed to refine it so that it would work in song form. So I spent some time looking up interesting words in the thesaurus, searching for inspiration on quote websites, and free writing about how I’ve been feeling over the last year in relation to time. There were a few quotes that I loved and could’ve drawn inspiration from if we hadn’t jumped ship and worked on a different idea:
I thought those three quotes in particular were beautiful. I could write a song based on each one.
Late afternoon, I logged into Microsoft Teams for our group cowrite – a session to finish the song we’d started during Tuesday’s seminar. We’d already written most of the song but we kept writing and refining. We had a really good time together but we did talk about whether four people were necessarily needed for the first draft of a song. Having said that, I think everyone contributed in their own ways and the song wouldn’t be what it is without all four of us. We ended up being on the call for over two hours before deciding to call it a day. I was a bit frustrated to leave it unfinished again but I think that’s just coming from my issues with productivity; I hate leaving things incomplete. I was still staring at the Google Doc when I had a spark of inspiration and jotted down a full bridge to look at next time. I thought it worked well so I was hopeful that the others would like it too.
Less than ten minutes later, one of my parents (who doesn’t live with us but is in our support bubble) arrived. We try to have an evening a week where we just hang out together and have some real human interaction. We treated ourselves to an Indian takeaway and caught up while we waited for it and then watched a couple of episodes of Lucifer, the show we’re currently watching together. It was very chilled out and I was practically asleep on the sofa when she got up to leave.
Mum and I watched a couple of episodes of Criminal Minds before going to bed and I watched a few more Daisy Johnson YouTube videos. This is one of my favourites so far:
It’s one of several that are sort of building a sonic picture in my mind as I put this song together. Yeah, I’m trying to work out how to write my own Daisy Johnson song but I’m also realising that it’s a form of procrastination too. When I lie down at night, my thoughts start to spiral and the spiral gets tighter and tighter until I can’t think or breathe. I definitely can’t relax enough to sleep. I’ve tried all of my strategies but they don’t seem to be working so I’ve been seeing the early hours of the morning a lot more often recently.
After going to sleep so late, I slept in, hours and hours later than usual. I missed almost half of the day, which was very disconcerting. And even awake, I couldn’t summon the energy to get up for a while so I scrolled through Twitter on my phone. I’ve recently gotten into #ActuallyAutistic Twitter (I knew it existed but hadn’t spent much time looking at it) but I’m still not entirely sure how I feel about it: some of the people on there are really lovely and share valuable tips and information but I’ve also seen some pretty intense debates that make me feel quite anxious, like it wouldn’t be safe to express my opinions or experiences without someone judging me or telling me how [insert word here] I am. So it’s a mixed bag and I’m not sure whether or not engaging with it is good for my mental health, right now at least.
Eventually, at about half twelve, I dragged myself up and into the shower. The points where they’d pressed the ultrasound wand were really tender and painful. There wasn’t any bruising but they hurt to touch.
Shower done, I settled in the living room. Sooty immediately hopped up for cuddles and ended up spending most of the day tucked up against me in one position or another. It was very cute and very soothing.
With so many big posts coming up, I decided to post a short, less intense post, editing and posting another Little Things post. It’s true what I write in those posts: I do want those of you who read my blog to know who I am as a full person, not just a Picasso painting made up of the specific parts I talk about in any given blog post. That’s part of why I write these posts too.
When that was finished and posted, I did some admin stuff, mostly emails: some music stuff, plus some messages around my long term project of tracing my family history (that’s a story for another post). I also continued my attempts at redrafting the lyrics of ‘One More Time’ but I was still struggling to get it right. It was going to be super satisfying when I finally hit the right combination of words but until then, it was somewhere between a really complicated Rubik’s Cube and banging my head against a wall.
Eventually it was just getting too disheartening so I took a break. I went to Tumblr as I often do for inspiration and while I didn’t find anything to help with this song, I did find some cool art, some interesting lyric analysis, and some beautiful gifsets from several of my favourite TV shows. At the very least, it released some of the tension in my brain.
It was an evening of Criminal Minds, dinner, and my physio exercises. Oh, and a further attempt at redrafting ‘One More Time,’ but still no dice. It’ll get there at some point; I just don’t know when. My brain just feels really overloaded and overwhelmed at the moment and that makes it really hard to think when I get stressed or anxious. And it just snowballs, everything getting worse and worse until I feel like I’m so twisted up in this net of my own thoughts that I can’t move, can’t think clearly. It’s exhausting and yet, sleep is such a struggle.
I really struggled to wake up but eventually I managed to drag myself into the shower and then the living room. One of the cats, Tiger, immediately sought me out for attention and paced relentlessly until I gave in and devoted all of my attention to her. The cats are all getting far too used to us being around all of the time…
Late morning, I had a FaceTime call with a friend that went on for over an hour. That was really nice and we had a good laugh, which I really needed after the week it had been. It gave me a much appreciated boost, which was only heightened by the flurries of snow outside. That was very exciting and when I went downstairs after the call ended, I got to enjoy watching the cats in the garden, watch their befuddlement at the snow: the little shakes when it landed on them, the pouncing on the settling snowflakes… It was incredibly adorable.
Back upstairs, I did a bit more thinking and searching for inspiration – in my various songwriting notes, in my diaries, on Tumblr – for my upcoming cowrite and I worked on that until it was time for the video call, about an hour later.
I think it was a good session, especially for a first time cowrite. It was with another of my coursemates and while she and I have known each other a while now, we hadn’t managed to write together up to this point. We had a good time and laughed a lot while still managing to write most of a really promising song in about ninety minutes. So I feel like we did well. I like the song and I like the message behind it; hopefully we can finish it sometime in the near future.
So I finished the session in a really good mood, that is until I saw that Sia’s dangerous, offensive, and incredibly ableist and problematic film, Music has been nominated for two Golden Globes. I was – I am – disgusted and appalled by how little so many people – in this case, the film industry – care about the wellbeing, the opinions, and the happiness of the autistic community. It’s horrifying. It makes me want to scream at someone but there’s no one to scream at. Put me in front of the Golden Globes people and I’d rip them a new one but that’s not gonna happen, not in this reality anyway.
can someone pls with a bigger platform talk about the fact that the golden globes nominated music, sia’s horrifically ableist movie, twice?? and the implications of that for autistic people ?
— maisie (@maiisiesh) February 3, 2021
Sia's 'Music' is a possible Golden Globe winner.
The film glorifies physical harm & inspiration porn for neurotypicals & a neurotypical was cast for a non-speaking autistic role.
Sia's response to #ActuallyAutistic critique with abuse.
Spread word: #NoGoldenGlobeForMusic
— Mx. Charis Hill ♿ (they/them) (@BeingCharisBlog) February 4, 2021
— Lauren Alex Hooper (@laurenahooper) February 7, 2021
Not sorry enough to pull the movie. Not sorry enough to reject the award nomination. Not sorry enough to leave her apology up on Twitter. Not sorry enough to reach out to the people she directly insulted. Not sorry enough to tell her fans to leave #ActuallyAutistic people alone. https://t.co/8zuYKvVqGM
— Julie Atwood (@jmatwood) February 7, 2021
– because Sias movie „Music“ portrays traumatic, deadly prone restraint as the appropriate response to autistic meltdowns.
– because „Music“ erases & harms autistic people, especially non-speakers.
— autistictic (@autistictic) February 3, 2021
I did my best to have a quiet evening since I had another busy day ahead of me but I couldn’t shake off all the unpleasant feelings around Sia’s film. I tried to distract myself and work on ‘One More Time’ but I just couldn’t focus. I was too emotional, too overwhelmed. I wouldn’t have been surprised if I’d spiralled into a meltdown, if not for the fact that I was too tired to even cry.
In the end, my Mum and I watched some more Criminal Minds while she gave me a neck and shoulder massage (one of her many lives was as a massage therapist). The pain is creeping higher and higher, up my neck and into the base of my skull so although it wasn’t the most comfortable experience, I felt better for having it. Less tension, less pain. Some of the time, at least.
Again, getting to sleep wasn’t easy but it was a better night than others so I’m grateful for that. I’ll take whatever I can get right now. I’m waiting on various things that will potentially help but everything’s moving very slowly. My logical brain is very understanding, given everything with the pandemic, but my emotional brain is less rational, struggling to cope with the pain and the anxiety and the lack of sleep. As human beings, we are more than capable of holding two such opposing emotional responses but it being possible and it being easy aren’t the same thing, are they?
Somehow that ended up being a lot longer than I’d planned, than I’d expected it to be. But apparently there was a lot of stuff in my head that was intent on getting out. Life feels pretty complicated at the moment.
Category: about me, animals, anxiety, autism, chronic fatigue, covid-19 pandemic, depression, diagnosis, emotions, meltdowns, mental health, music, quotes, sleep, therapy, treatment, university, video, writing Tagged: 2021, a week in my life, ableism, actuallyautistic, actuallyautistic twitter, agents of shield, antidepressants, anxiety, anxiety disorder, asd, assessments, autism, autism spectrum disorder, autistic, autistic adult, autistic student, birthday, blog, blog writing, cats, cfs, chronic fatigue, chronic fatigue service, chronic pain, compulsive writing, coronavirus, covid-19, cowriting, cowriting session, criminal minds, daisy johnson, demo, dentist, diary, diary writing, drowsiness, ecg, echocardiogram, emily prentiss, family, family history, family of cats, feedback, friend, golden globes, grades, grandparent, granny, hydrotherapy, hypermobility, hypermobility diagnosis, lockdown, lockdown 3.0, lucifer, massage, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medical trauma, medical treatment, medication, meltdown, music film, my cats, occupational therapy, pain, pain management referral, pandemic, pandemic 2020, part time masters student, part time student, persistent fatigue, pyramiding, quote, quotes, remote therapy, remote writing session, richard marc, richard marc music, richard sanderson, seminar, sensory overload, sia, sleep, snow, song mapping, song maps, songwriter, songwriters, songwriting, songwriting inspiration, support bubble, swimming, therapy, trauma, tumblr, twitter, university, video, videocall, week in my life
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.