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.

Things I Did In Lockdown

Given how stressful I was finding the pandemic and the lockdown, I thought it might be helpful to keep a list of what I’d done (achieved, managed, spent time on – whichever word is most appropriate), whether it took a huge amount of effort or was simply something I’d wanted to do, just to remind myself that I was still doing things, that I was still capable of being productive during such a difficult time. Some of them are silly, some of them important, and some of them are just interesting. And I thought posting it would be a good record of sorts when it comes to looking back at this time.

I don’t consider us to be out of lockdown by posting this. It’s just that now I’m starting a new year at university – the second of my Masters Degree – so my life is going to change. I’m doing all of my classes online, rather than going in for half of the classes as is the current norm at uni; I’d be commuting and the risks still feel too high for just two hours a week. So in terms of leaving the house, not much is changing. But it’s a moment of transition in my life and so it seemed like a natural stopping point for this post. I may continue it as a series, depending on how things play out going forward but for now, this is what I did while in lockdown, from 13th March to 20th September 2020…


  • Watched the entirety of Grey’s Anatomy.
  • Bought a Kalimba.
  • Went down a YouTube rabbit hole of Otomatone covers…

This one and this one are my favourites.

  • Did the Enneagram test.
  • Tried (unsuccessfully) to teach one of my cats to play fetch.
  • Watched all of the Harry Potter films one after the other (more than once…).
  • Continued therapy via Zoom.
  • Released and promoted the ‘Clarity (Academic Remix)‘.
  • Released and promoted the ‘Clarity (Academic Remix)’ Music Video.
  • Wrote a 4000 word, fully researched and referenced essay about authenticity and imagery in ‘All Too Well’ by Taylor Swift for my Masters Degree.
  • Finished the first year of my Masters Degree.
  • Rescued one of my cats (the youngest) when she went missing, stuck up a tree for maybe twenty four hours, with the help of some kind neighbours (all of us masked and socially distanced).
  • Rewatched many of my favourite films and TV shows, including…

Films: Hot Fuzz, The Martian, Miss Congeniality, etc.

TV Shows: Episodes, Lucifer, and Nikita, etc.

  • Wrote and posted fifty three blog posts.
  • Watched Season 15 of Criminal Minds, finishing the show after following it for ten years.
  • Read a lot of Fanfiction…

This is something I did a lot of as a teenager but reverted to during my Masters as a form of stress relief: escaping into another world, a familiar and safe world. My most impressive achievements were reading all of the Ros Myers (Spooks) Fanfiction I could find and reading The Changeling and it’s three sequels (a Harry Potter alternate universe where Ginny is sorted into Slytherin, which totals nearly 600,000 words). Of course, there were more one off stories; these are just my greatest hits.

  • Had multiple movie dates with friends and family.
  • Had multiple Studio Ghibli movie dates with one group of friends.
  • Multiple collaborations via video calling: working on my songs, working with new people, critiquing the songs of friends, and so on.
  • Caught up with Law & Order: SVU.
  • Received a grade I was really happy with for my Musicology essay on Taylor Swift’s song, ‘All Too Well.’
  • Released and promoted ‘Sounds Like Hope.’
  • Rewatched all ten seasons of Friends (multiple times – although mostly as background noise).
  • Played the piano a lot, learning the songs of others and writing my own.
  • Watched all of Little Fires Everywhere in one day.
  • Released and promoted the music video for ‘Sounds Like Hope.’
  • Bought a new cat tree for the cats (they’d practically destroyed the old one), one with beds for all five of them and eventually we caught them all in it at once.

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  • Had multiple panic attacks and meltdowns, some really severe.
  • Watched all of Absentia Season 1 in one day.
  • Watched multiple new films including What Happened To Monday, Isn’t It Romantic, Ocean’s 8, Studio Ghibli’s Castle In The Sky, Fantasy Island, The Half Of It, Official Secrets, The Accountant, and more.
  • Watched multiple new TV shows, including Little Fires Everywhere, Absentia, Broadchurch, Agents of Shield Season 7, The Fix, Lucifer Season 5 (Part 1), Away, and more.
  • Started watching Castle.
  • Made multiple banana breads (and other things, like chocolate chip cookies, but that’s less uncommon).
  • Signed petitions and made donations to various causes in the Black Lives Matter movement and collected a list of resources to educate myself more when I don’t feel so incredibly mentally and emotionally fragile (short pieces, like some of the infographics on Instagram have been really good and digestible but I’ve been struggling to absorb large amounts of new information due to my general mental state, which has included frequent meltdowns and panic attacks, all affecting my concentration and memory).
  • Filled six diaries.
  • Watched many of my favourite movies from childhood, including The Emperor’s New Groove, A Bug’s Life, and all of the Wallace and Gromit shorts and movies.
  • Sorted through my clothes.
  • Sorted through and reorganised my DVDs.
  • Spent A LOT of time with my cats.

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  • Made a significant dent in sorting through all of my possessions.
  • Sorted through my jewellery.
  • Worked on my music theory knowledge during a series of piano lessons.
  • Weaned myself off Pregabalin.
  • Gathered up loads of stuff to donate to charity shops when they reopen/are able to accept donations.
  • Cleared out my box of electronics, technology, cables, etc, only keeping the things I actually use and need.
  • Cleared my eight USB sticks.
  • Celebrated the kittens’ first birthday.
  • Received my new laptop (plus other helpful equipment) from DSA, the process of which has been going on for months, only to find that it wasn’t the right laptop.
  • Watched multiple online/streamed concerts, including ICMP Songwriters’ Circles, Kalie Shorr, Savannah Keyes, Song Suffragettes, Ingrid Andress, and more.

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  • Attended Ingrid Andress’ first livestream show with a meet and greet afterwards, which started at 2am and resulted in me staying up until 5am.
  • Watched all of Absentia Season 2 in one day.
  • Took part in multiple research studies looking at how the pandemic and subsequent lockdown are affecting mental health in general, specific mental health conditions, and Autism. I also participated in studies about experiences with therapy and about living with Chronic Fatigue Syndrome.
  • Received and set up the new laptop from DSA.
  • Loaded up my old Photos library onto the new laptop, only to find three (or more, sometimes up to seven) copies of basically every photo so I started going through and deleting the duplicates (getting the wheel of doom approximately every five seconds). Got down from 85,000 to just under 30,000 and then organised them all into albums, which took about three weeks. It was a mammoth job but it was incredibly satisfying to finish.
  • I applied to be part of the Disability Pride 2020 Livestream, got a place, and saw myself on TV!
  • Managed to go out for a haircut.
  • Planned the ‘Back To Life’ music video, having had to scrap the original plan due to travel restrictions and anxiety.
  • Dyed my hair orange.
  • Dyed my hair red when the orange wasn’t the right colour.
  • Filmed the ‘Back To Life’ music video on the beach with Richard.
  • Watched all of Absentia Season 3 in one day.
  • Was interviewed by a Dutch journalism student about being a new artist during a pandemic.
  • Obsessively listened to and analysed Taylor Swift’s beautiful new album, folklore.
  • Bought a Gretsch electric guitar (for my birthday but early so that I can make use of the time I have before uni starts, in whatever way it starts).
  • Tried to go to the gym but didn’t feel it was safe.
  • Finally saw Hamilton via Disney+.
  • Met up with a friend for a dog walk, meeting her gorgeous new puppy for the first time.
  • After experiencing serious and ongoing pain in both shoulders down to fingers, I had a Zoom appointment with my GP who referred me to an occupational rheumatologist (which would apparently take two to three weeks). And since any medication stronger than Ibuprofen and Paracetamol will cause side effects similar to those of my anti-depressants, she’s reluctant to prescribe anything stronger unless absolutely necessary.
  • Finished Liar Series 2.
  • Updated my photo albums, after getting eighteen months behind.
  • Got up to date with Agents of Shield Season 7 so that I could watch and celebrate the finale of the season and the show itself with the show’s cast, crew, and fandom on social media.
  • Watched the Perseid meteor shower and saw a handful of ‘proper’ shooting stars.
  • Suffered severe electric shock like pain in my lower legs, requiring more doctors appointments. The information was added to my rheumatology referral and I started taking stronger painkillers.
  • Watched Hamilton with some of my family who’d seen it live and loved it but not seen the film.
  • Watched the finale of Agents of Shield, not just of Season 7 but of the whole show, and cried my eyes out, although sometimes I was laughing at the same time. I loved it and thought it was a really beautiful end to such a fantastic show. I’ll miss it more than I can say but I’m so grateful to have had it, to have had Daisy Johnson, and I’ll always carry with me what it’s meant to me.

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  • Released and promoted ‘Back To Life.’
  • Did an interview with Vents Magazine.
  • Went on several dog walks with my friend and her puppy.
  • Contributed to #DaisyJohnsonAppreciationWeek2020 and #QuakeWeek on social media, posting edits on Tumblr and Twitter.
  • Did an interview with Middle Tennessee Music.
  • Filmed the Behind The Video for the ‘Back To Life’ music video.
  • Went through my clothes a second time (sorting through my possessions, especially when I have an emotion connection to them gives me decision fatigue and I stop being able to make objective decisions – there was a lot to go through the first time).
  • Did an interview with Zap Bang Magazine.
  • Made the decision to do the next semester of my Masters Degree 100% online.
  • Bought Bon Iver tickets for November 2021 – here’s hoping it’ll be possible to go!
  • Put together the ‘Back To Life’ music video with Richard.
  • Released and promoted the ‘Back To Life’ Music Video
  • Kept a two week photo diary for the CFS/ME research study.
  • Finally captured the motivation to start learning the Kalimba only to find out there was a problem with the one I’d bought so I have to sort that out before I can really start learning to play it.
  • Went through a traumatic few weeks worried that there was something seriously wrong with one of my cats but after multiple vet visits and lots of tests, she’s been given a clean bill of health.
  • Attended the (online) Induction event for the new year at university.
  • Acted as a guinea pig for one of my tutors as he fine-tuned a couple of things for the upcoming online classes.
  • Was given a signed copy of folklore by Taylor Swift as an early birthday present.
  • Signed up for a home recording course.

I doubt I’ll ever be able to look back on this time positively (from a personal perspective – in the wider sense, it’s clearly been catastrophic) but there have been moments and experiences that I am grateful to have had. As I’ve said, I don’t consider lockdown to be over so this post may become a series but with my Masters to focus on, I will have significantly less time to dedicate to bigger projects like organising my photos or sorting through my possessions. So lockdown continues; I’m just entering the next chapter.