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.

A Week In My Life (in Lockdown)

It’s been a while since I did a ‘week in my life’ post and I haven’t done one about lockdown, mainly because I feel like most of my days are incredibly similar, which wouldn’t exactly make for a scintillating post. But I saw the idea in my ‘blog ideas’ list and realised that over the last few weeks, I have managed to be a bit more productive (with my mental health fluctuating so wildly, it’s hard to really get into anything) and so each day is looking more like its own entity.

The week in this post started on Monday 22nd June and ended on Sunday 28th June.


MONDAY

Even though I don’t have anywhere to be, I’m still getting up relatively early, partly because I’m at my best mentally in the mornings (generally) and partly because we have five cats who are always very eager for breakfast. They’re actually really helpful when it comes to maintaining some kind of routine; sometimes I think it’s easier when there’s something external to build from, rather than trying to build it from nothing.

Cats fed, I settled on the sofa and replied to all the messages on my phone that were waiting for me. In times of mental distress (which there is a lot of lately), I tend to abandon my phone and withdraw from communications because it’s all just more than I can handle. However, it can then be a rather daunting task when I feel able to engage again. But I managed to reply to everyone and messaged some of my friends that I hadn’t checked in with for a while.

I spent the morning sorting through my tech box of electronics, my store of everything electronic, from spare pairs of headphones to camera equipment to cables I know longer own the devices for – I’m sorting through all of my possessions and this was next on my list. I went through it, throwing out the stuff that was damaged or so old that it was no longer useable, piling up some stuff to give away, and organising the remaining items by function. I certainly don’t need the big box anymore.

I didn’t stop there though. I went through all eight of the USB sticks I’d found, deleting the files I didn’t want and storing those I did. I now have multiple memory sticks empty and ready to go whenever I need them. And then I started on the hard drives, most of them assorted back ups of my laptop. That’s a job that’s going to take considerable time. But I’ve assigned each of them a function and started moving the relevant files. I can’t have done more than a quarter of the work and even that took most of the day.

Eventually I gave up, having spent so much time on it that I kept getting confused about which hard drive I was in. So I disconnected them, packed them away, and did a couple of hours work on my blog post for the kittens’ birthday post (here). Me and Mum had dinner together, continuing our rewatch of Nikita, and then I spent about forty five minutes at the piano, during which I recorded this:

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This song calms my soul ♥️ @sarabareilles

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Then we fed and settled the cats before going to bed.


TUESDAY

It was a quiet day. I spent most of it working at my laptop, finishing the blog post for the kittens’ birthday the next day and writing the one about coming off Pregabalin (here). I also planned out the next few as well, with sketches of the rough post structures. So it felt like a pretty productive day, which I was pleased with.

My Mum and I usually work pretty companionably since her desk is in the living room and I tend to work from the sofa (it’s better for the physical pain that I usually deal with to some degree or another – I need to get a specifically supportive desk chair but I’d have to go and try them out, something I can’t – and wouldn’t choose to – do until it’s safe). But recently she’s been working at the kitchen table, paper spread out around her as she transfers her accounts to a new system. It’s weird, going from being basically on top of each other to almost feeling like I’m alone in the house.

We reconvened in the evening, having dinner with several more episodes of Nikita, and then I sat at the piano, playing for almost an hour, methodically practicing each of the songs I’ve been learning recently. Thank god my neighbours are so easygoing and even supportive of my music because I usually ending up playing fairly late at night and even though I try to keep it as quiet as possible, some noise does drift through the walls.

I was just going to bed when I got a Twitter notification that Ingrid Andress is doing a virtual show on Tuesday 30th June. I love her and was supposed to see her live when I went to the US (before the trip was scuttled by the pandemic) so that was really exciting. I went straight to my computer to get a ticket and thank god I did because it was already difficult to get a ticket. I also managed to get a meet and greet, which should be fun; I have no idea how it will work online (plus it will be about 3am my time…) but it will be really nice to see her again. I’ve been going to her shows and chatting with her afterwards for the last several years so I’m glad that lockdown won’t prevent that.

(Note from present me to past me: it was an awesome show and I really enjoyed my chat with Ingrid.)


WEDNESDAY

It was the kittens’ first birthday so we didn’t delay in heading downstairs and presenting them with their present. They both had a go at it but it was Sweep that eventually managed to open it, revealing the birthday cake shaped toy. Despite not having had breakfast yet, they were both very excited and played with it enthusiastically. It remained in tact for about twenty minutes before Sooty managed to tear the felt flame of the candle off it… Sigh. Ah well. They don’t seem to mind.

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Unfortunately, I ended up getting caught in a panic spiral about the loosening of lockdown (I know I’m not the only one who feels that the government cares more about the economy and their reputation than the lives of the British public) and the scientists declaring that they feel we’ll still be dealing with the pandemic next year, that a second wave is extremely likely. The idea of feeling so terrified and so unsafe and so worried for my loved ones (plus the uncertainty around my education and my career) for all that time is exhausting and makes me feel almost overwhelmingly sick.

In hindsight, it probably turned into a meltdown but I didn’t really process that thought at the time. The intensity of my emotions are so extreme at the moment that it can be hard to clearly identify them within the mess I’m feeling. In the end, I was so worn out that I fell asleep on the sofa and didn’t wake up for three hours, a common reaction to a meltdown, for me at least.

When I woke up, I didn’t feel better – that’s not how it works, at least for me – but my head was a little clearer. WordPress had been playing up on my laptop so I hadn’t been able to post the kitten birthday post but eventually I got it up, complete with a video of the kittens: one second a day everyday for the first year of their lives…

In the evening, I spent about an hour on FaceTime with one of my friends. We had a good moan about missing each other and the things we can’t do, drooled over the guitars we wish we could afford, made plans for the first time we can hang out properly again. It was fun and nice and as normal as you can get in a time like this. Mum had wandered in and out of the room during the conversation and commented that we sounded like we always do, hanging out as if we were on opposite ends of the sofa. That made me laugh.

We had dinner together and continued our rewatch of Nikita, staying up far too late.


THURSDAY

I’d struggled to sleep with the heat so I woke up, still tired and with a throbbing headache. Not exactly the greatest start to a day.

I sorted the cats and then spent some time tidying the living room and sorting out my space: it had gotten pretty chaotic with the various stationary and electronics that I always have within reach due to my frequent need for them. It’s definitely better and I’m always calmer and more productive in a tidy space.

I’d intended to do some more organising of my hard drives but the rising heat (over 30 degrees) was only making my headache worse. I ended up lying on the sofa with my eyes covered, waiting for the painkillers to kick in, except I accidentally fell asleep and didn’t wake up until about three hours later. Thankfully I slept through the hottest part of the day: I don’t cope very well in the heat. The cats were struggling too, poor babies, stretched out on the cool of the kitchen floor. I’ve never seen them look so flat.

I didn’t manage a huge amount because the headache never really abated but I did get a few bits and pieces done: some research for the blog, some blog writing, watching a bit of TV. But most of my energy was focussed on managing the headache; I spent a lot of time with my eyes covered, blocking out the light.

Mum and I kept to our evening routine of dinner and Nikita rewatch (we’ve just finished season two, which has such a great finale) and then, to finish off the evening, I listened to the two tracks that Richard (my writing partner) had sent me and gave him my feedback. I loved them: they’re both really cool but I had a handful of comments that can hopefully be of use. I also sent him a song of mine to listen to before we start work on the production.

That done, I went to bed but it was so hot and humid that I felt like I could barely breathe.


FRIDAY

It was so hot that I just couldn’t sleep. It wasn’t until about five am that I finally drifted off. It was uncomfortable and frustrating but as least I got to witness the incredible thunderstorm that started at about two. There was a lot of lightning and heavy rain, although not much thunder. I sat up and watched it for ages. I absolutely love thunderstorms; they’re my favourite kind of weather. The air just feels different and I feel lighter. Apparently thunderstorms create negative ions in the atmosphere and that’s where that feeling comes from (x).

I struggled up at eight thirty and managed to have breakfast and a shower in time to relax for a moment and collect my thoughts before my therapy session. It’s taken me a while to get used to therapy via Zoom and while I still think face to face is better (and I really miss it), I am really grateful for it. I know that going without therapy during this time would be incredibly damaging for my mental health. I think it’s probably fair to say that we’re not necessarily focussed on making progress right now, rather we’re focussing on managing my emotions and the things I’m struggling with in the present moment, like my overwhelming fear of going outside and my sudden inability to sleep properly to name a few. I mean, technically it all comes under distress tolerance, one of the fundamental areas of Dialectical Behaviour Therapy so I guess we are making progress in a sense. Anyway, we had a pretty intense session because of several tough things going on at the moment, not helped by my lack of sleep. By the time we were done, I was exhausted.

I had a gentle afternoon, watching Nikita with Mum, and then napped on the sofa for a couple of hours. Three hours of sleep really isn’t enough. Throw in a tough therapy session and I was completely useless. I wasn’t going to make it to the end of the day without a nap.

In the evening, we had a socially distanced dinner and movie with one of my parents (she doesn’t live with us). Despite keeping up to date with the briefings and doing my own research, I’m still really confused about what the official safety guidelines are so we’re just sure to be really careful: apart from seeing each other now and then, none of us go out for anything other than the essentials, we social distance when we’re together, and we keep the space (and ourselves) as clean/hygienic as possible. It’s hard not being able to behave naturally together – having to be so conscious of the risks all of the time – but it’s so, so good to see her and hang out and have just a touch of normality, even if it is only a touch. I’ll take what I can get. Getting to see her in person is better than not getting to see her in person.

Despite my nap, I was tired and so me and Mum had a quiet evening together. Exhaustion always makes my anxiety worse so I just needed some time with her. Sometimes we joke that, rather than an emotional support animal, I have her: my emotional support person.

Always far too late (I swear I’m trying to maintain a regular sleep pattern), we fed and settled the cats before going to bed.


SATURDAY

I slept better but still not well and I woke up feeling very anxious and unsettled, usually how I feel when I’ve had nightmares but can’t quite remember them – I definitely want to write a post about how the pandemic has affected sleep and the increased number of nightmares. It was still quite early so I stayed in bed, trying to shed the feeling. The cool, grey weather helped.

Eventually I got up, fed the cats, and managed to get a few good cuddles in, which also helped. Although nothing helped as much as the Diazepam I took.

I had a quiet morning, doing some admin, some blog post writing, and a couple of video calls to family and then I spent the afternoon catching up with my diary. The one mental health problem that hasn’t been too badly affected by the pandemic and lockdown is my OCD. It’s much easier – and quicker – to write down everything that happens when so much less is happening; before lockdown, busy days could take hours and hours to write up. My ability to concentrate has been seriously compromised by my anxiety so it still takes longer than it should but at least, with emptier days, it balances out a bit.

Mum and I had dinner, continuing our rewatch of Nikita, and then I spent some time at the piano. One of the things I really wanted to use my empty semester – and I guess, now the lockdown – for was improving my musical skills and at the moment, I’m just really in love with playing the piano. I’ve definitely improved already, which is really satisfying. I practiced my current repertoire and then tried to work out a new song. But it was tricky and I was tired so I didn’t get far before giving up – for the night, not on the song in general.

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It was late but before going to bed, Mum (who used to be a full-time massage therapist, although it’s no longer her primary job) massaged my neck and right shoulder. My Trichotillomania urges have gone into overdrive since Covid-19 emerged and they’ve only gotten worse as time has passed. How I haven’t ended up with any bald spots, I have no idea. But because of my excessive pulling, my arm and shoulder have seized up and become really quite painful. The muscles actually hurt to touch but she was very gentle and I do think it helped.

We went to bed and I actually managed to get to sleep fairly quickly, which is a bit of a miracle at the moment.


SUNDAY

I managed to sleep in a bit, which was nice, although I’d still had busy dreams. It took me a while to make sense of what was the dream and what was real and when I dragged myself out of bed, I felt slow and sluggish. Fortunately the cats had been very patient about breakfast. Having said that, they were very pleased to see us (and vocal about it).

I had breakfast and a shower, leaving me with fifteen minutes or so to clear my head before my music lesson. One of my parents is a professional musician and music teacher and as another of my goals for this period of time is to improve my understanding of musical theory, I’d asked a while ago if we could spend some time on it together (well, via Zoom). So, every Sunday, we dedicate a couple of hours (sometimes more if we’re on a roll) to working out the chords to a song, figuring out the rhythms to play, etc and then discussing the theory that underpins those things in that particular song. Then I practice it in the week before our next session. It’s hard work – I’ve always found theory quite difficult to really understand – but I do think I’m getting better, if slowly. I think learning it in a practical, applied way is helping and it’s much more fun than just trying to memorise it from a book. To my amusement, it’s basically turned into an attempt to learn every Kalie Shorr song because I love her writing so much but it’s also given me a new appreciation for the songs because I’m seeing how much more to them there is. As I said, it’s difficult and I’m exhausted afterwards (probably from the effort of keeping my concentration on it – a serious job at the moment) but it feels good to be learning and trying to improve my skills.

My concentration is always pretty poor afterwards but I did manage to get some blog writing done. I’m really enjoying this style of writing at the moment; it just flows really easily. I’m also trying to get ahead of myself by a couple of posts, creating a buffer of sorts, just in case I hit a period of writers’ block. That happened a while back and suddenly writing became really difficult and stressful, not exactly something I need more of right now. So I’m taking advantage of (and enjoying) how good and effortless it feels.

Early evening, Mum and I FaceTimed with my Granny. Mum speaks with her everyday while I join in every few days (sometimes in the frame and sometimes just in the room, adding to the conversation). We do the crossword together – something we’ve always done when we’re actually together – which is really fun and catch up on each other’s days. I worry about her, her age making her more vulnerable and her being alone during lockdown. We (especially my Mum and my aunt and uncle) try and talk as much as possible and suggest new things to do and new forms of entertainment (especially when her television died and no one would go out to fix it) but I still worry.

After we hung up, I tried to set up the laptop that had finally arrived from DSA, only to find out that they’d sent me the wrong one. Fortunately, I discovered that (sadly, I’m experienced enough with the problems of getting support as a disabled person to check) before I loaded all my files onto it. So we got in contact with them (and after a lot of back and forth) and they’re sending another one to swap it with. When this process is officially over – as in I’ve got the laptop and everything is signed off on – I will write a blog post about this whole process because it has been long and complicated and stressful and I think these experiences need to be out there.

Me and Mum had dinner with more Nikita and I did some more diary writing.

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Somewhere closer to a sensible bedtime, we fed and settled the cats and went to bed.


I hope this was somewhat interesting. When I started writing it, I hadn’t counted on a heatwave that made me just this side non-functional for two days; I’d been hoping to be more productive. I know that we don’t have to be productive everyday but achieving something, even something small does help me to manage my mental health and keep my depression and anxiety from getting into a cycle that’s difficult to break out of.

Anyway, that was a week in lockdown: some routine and some different activities to mix things up. This seems to be the best approach for me. The routine is comforting but the variation keeps me from feeling like I’m in a time loop, living the same day over and over again.

I hope you’re all keeping safe and healthy in these times. I hope lockdown isn’t too traumatic for you and I’m sure you’re managing the best that you can.