Posted on May 9, 2021
Trigger Warning: This post contains mentions of self harm, but it’s simply a statement that it happened and there are no descriptions, graphic or otherwise. If this could upset or trigger you, please don’t read any further. Please always put your mental health and emotional state first.
So we’ve reached the last semester of the Master’s, with the big, final project that we’ve ultimately been working towards throughout this whole course. It’s a big deal, exciting and scary because – obviously – I want to do well and create a project that I’m proud of. But I am worried about my health, mental and physical, getting in the way and making it a difficult to both work hard and enjoy the process. So I thought, with all of this in mind, I’d write down where my head’s at and how I’m doing – I guess, so that I have a record of how I’m feeling right now, at the very beginning of the project.
At the moment, my biggest difficulties seem to be chronic fatigue and pain that are a result of my recently diagnosed Hypermobile Ehlers-Danlos Syndrome. I’m tired and sleepy all the time; some days, I can barely keep my eyes open during the day. While the physical tiredness is likely due to the hEDS, at least in part, we suspect the sleepiness is due to my antidepressant, Phenelzine. I want to switch to something else as soon as I can but mid-Master’s is not exactly a great time, given how long it generally takes for antidepressants to take effect and my track record of reacting badly to all but Phenelzine (so far, at least). So I’m having to just put up with that, with the dwindling help of Red Bull.
The pain has been really bad, particularly in my legs, arms, and back. For months, I’ve been taking painkillers daily but I feel like, over the last few weeks or so, it’s started to get slightly better. I’ve been doing the Occupational Therapy exercises for my wrists and hands and I’ve been able to start swimming again (yay!), both of which do cause pain of their own but it’s a very different pain and actually wears off pretty quickly while the hEDS pain tends to just get worse and worse unless I take painkillers. I’m getting better at figuring out where my limits are and stopping before I overdo it – most of the time. It’s hard but I do feel like I’m seeing progress.
My depression has been okay recently, much less of a problem than it has been in the past (she says while still on the ‘end’ of one, but I’ll get to that in a minute). I had one awful episode at the beginning of April, which did result in self harming. And then I had another episode last week, which I’m still feeling even if I’m not drowning in it anymore (it was kind of forced to the back burner by the worst migraine I’ve ever had). Both episodes were triggered by really upsetting news; they didn’t come out of nowhere like they sometimes do.
My anxiety has been a lot to deal with, but then there have been a lot of things to be anxious about: keeping up during the semester, the assessment and doing well in the module, all things COVID related (I’ve developed this weird house-separation-anxiety-like-thing whenever I’m out of the house too long, which is horrible), all of my health stuff, preparing for the new module and final project, trying to balance everything in my life, and so on. It’s exhausting and has a knock on effect; the rest of my mental health issues are all affected by my anxiety.
The two areas that are most tightly linked with my anxiety, I think, are my Trichotillomania and my OCD. My Trich hasn’t been too bad of late – not great but not unmanageable. But my OCD has been much more of a struggle lately than it sometimes is. I wrote about it in general here (so if you need a refresher on what my OCD is like, this is probably a useful read) but with everything going on recently, it seems to have kicked up a gear. I just can’t seem to do everything and then write all of it down; there aren’t enough hours in the day, which just leads me to getting more and more behind with everything, which just makes it worse and worse. Again, it’s just exhausting. I feel suffocated by it but I don’t know what to do about it; it feels like the walls are closing in around me and there’s nothing I can do to stop them.
As for autistic meltdowns, I haven’t had many of late. I think that’s because, despite my anxiety, I’ve had a really good few months. As I said in my previous post, this last university module and all the writing that came part and parcel with it was really good for me and I felt really good in myself so, in general, things didn’t build up to the point of meltdown. There were a number of occasions where something took me by surprise (for example, an unexpectedly triggering advert – I hadn’t even known that it was something that would trigger me so that was unfortunate for everyone) and I had a meltdown but as things go, it’s been better than it has been.
I’m not entirely sure how my ADHD manifests yet, having only received the diagnosis recently. If only it were as simple as getting the diagnosis and everything making sense… So I still have work to do in that regard. But I’m fairly certain – as certain as I can be at this point – that my issues concentrating and the feeling of my brain working against me are part of this picture. For the moment though, I’m in the dark about all of this. I’m in an impossible position medication-wise (I’m going to write about this in more detail at some point – it’s just that I’m still processing it all) so I’m stuck and unsure how to manage these problems. It’s frustrating and tiring and I wish there was an easy answer. Or even an easier one than I’m currently faced with. But there doesn’t seem to be. So I’m not sure where to go from here.
And the newest problem – because I really needed more problems… – are these migraines that I’ve been having over the last month. In the past, I’d have a migraine every few months or so but recently they’ve been different. They’ve been completely debilitating, painful to the point that I’ve ended up in A&E and had to have an ambulance called to the house because they’ve been so bad. They’ve also gone on for days when previously I could sleep them off and they’d be gone in twenty four hours. I’ve yet to find pain relief that does a decent job and I find that very scary. Calling 111 and them sending an ambulance because I was in so much pain but so light sensitive that even a darkened room felt too bright is a big deal and I’m scared of what’s next, of how it could get worse. I don’t know what’s causing them and no one else seems to either.
And finally… I’ve been the most consistent with therapy I’ve been since the pandemic began, even if I still find it hard and less productive when doing it over Zoom. But it’s looking like we’ll be back to face-to-face soon, which is exciting if scary – as I said, I’m finding it quite stressful to be out of my house. But hopefully, therapy will go back to being as helpful as it was pre-COVID, when it was face-to-face all the time. I don’t know exactly why it doesn’t feel the same over Zoom – maybe I find it harder to connect and talk about the hard stuff when I’m not in the same room as my therapist – but it just doesn’t, so I’m looking forward to getting back to the room.
So that’s it, I guess. This is my mental health (and I suppose, physical health update) before I start the final module of my Master’s, The Major Repertoire Project. Everything feels very messy and complicated right now, which isn’t exactly reassuring. I want to do well in the module, of course, but I also want to really enjoy it and really get the best out of it. The module doesn’t officially start until tomorrow but I’ve already started working on my project. I’m so excited. I just hope I can manage it with all of this other stuff going on.
Category: about me, adhd, anxiety, autism, covid-19 pandemic, depression, diagnosis, heds, medication, meltdowns, mental health, music, ocd, self harm, therapy, treatment, trichotillomania, university Tagged: adhd, adhd diagnosis, anxiety, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, chronic fatigue, chronic pain, coronavirus, covid-19, depression, diagnosis, drowsiness, ehlers danlos syndrome, fatigue, generalised anxiety disorder, heds, hypermobile ehlers danlos syndrome, hypermobility, major repertoire project, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, meltdown, mental health, mental health update, migraine, obsessive compulsive disorder, occupational therapy, ocd, online therapy, pain relief, pandemic, pandemic 2020, pandemic anxiety, self harm, sleepiness, swimming, therapy, trichotillomania, trigger, trigger warning, tw, university
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 November 28, 2020
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.
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.
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.
Category: about me, animals, anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, emotions, medication, mental health, music, sleep, university, writing Tagged: ableism, anxiety, arrangement, asd, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, autistic student, blog post, blog writing, cat, cfs, chronic fatigue, chronic fatigue syndrome, concentration, dafne keen, day in my life, depression, distraction, distress, emotional, emotional overload, emotional overwhelm, emotions, energy, energy levels, essay, essay writing, family of cats, fatigue, feedback, feelings, final project, focus, folklore, folklore: the long pond studio sessions, friend, friends, grammy 2021 nominations, grammys, grammys 2021, halsey, his dark materials, ingrid andress, instrumentation, lin-manuel miranda, lockdown, lockdown 2020, major repertoire project, maren morris, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, mental health, music, musical arrangement, my cats, nap, natalie hemby, nerve pain, online classes, online learning, online university, overloaded, overwhelmed, pandemic, pandemic 2020, part time masters student, part time student, prioritising, productivity, rationing energy, recovery, recovery time, rest, routine, ruth wilson, schedule, seminar, sensory information, sensory overload, sensory sensitivity, sia, side effects, sleep, sleep schedule, sleepiness, sleeping, social media, socialising, songwriter, songwriting, student, taylor swift, time management, tired, tutorial, tv show, university, visibility, vitamin d, vitamin deficiency, waiting list, workshop, writing
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…