Posted on February 12, 2022
TW: Mentions of self harm and suicidal thoughts.
So, I’ve been gone for a while. After having a bad reaction to the first ADHD medication, I had another bad reaction to the second, Bupropion, as well. Everything fell apart and I was really unwell for months; I couldn’t get out of bed, let alone write. I’m still not feeling great but things are better than they were and I am starting to feel able to write again, hence this new post.
After the mess that was Xaggitin, I was hopeful (kind of – in the only way you can be when you’re feeling hopeless and suicidal) that Bupropion would be better, given that it was an antidepressant but one that’s supposed to help with ADHD. I honestly don’t know whether it was better, which is somewhat mindblowing considering how awful the Xaggitin was.
As always, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
BUPROPION – 150mg
The most pressing of the side effects was the nausea: it was overwhelming. And it went on all day, every day. It was horrendous. I was barely eating and while I can’t see it, I’ve had multiple people comment that I’ve visibly lost weight. (I also had a weird reaction to the Christmas tree in that it made the nausea even worse – it also irritated my eyes, nose, and throat, making my cough even worse, which wasn’t pleasant.)
I had consistent difficulty sleeping. I was always wide awake until very late at night (or early in the morning) and then I struggled to get up at anything approaching a reasonable time the next day – I also had a lot of very vivid, stressful dreams, which is something I’ve noticed pops up when I change medication. I was physically exhausted all the time (both therapy and hydrotherapy, for example, had me falling asleep on the sofa, which I haven’t done in months) and I was feeling very burned out and overwhelmed with nothing left emotionally as well as physically. I had a couple of almost meltdowns as a result (I think the only reason they didn’t turn into full on meltdowns was because I was so physically exhausted so I just shut down instead).
I was very depressed, feeling hopeless and having suicidal thoughts. I was also restless and had this ongoing sense of unease. It was awful but my psychiatrist strongly encouraged me to stick with it for a month to really get a feel for it, for whether it would help or not. The depression and suicidal thoughts could’ve been a hangover from the Xaggitin and the only way to know was to give it more time.
I was also having headaches, not quite at migraine level but not far off.
The nausea continued, unfortunately. It was still bad but it was a little better on some days, I think. All of the food around Christmas was pretty stressful though: I still didn’t really have any appetite but I did manage to eat a bit, although what I used to consider a normal potion made me feel very unwell.
My sleep schedule remained messed up too. I was getting to sleep at around three in the morning (regardless of any help, that being medication or the methods I’ve used in the past that have helped) and then struggling to get up the next day. There was one night where I never got to sleep and then, the night after, I slept for fourteen hours and felt well rested for the first time in longer than I can remember. I’d hoped that that would right my schedule – at least a bit – but it didn’t. I was back to struggling to sleep the night after that. And I was still having the terrifyingly vivid nightmares. I was also physically exhausted: Christmas Day and a small family thing the day after Boxing Day, in particular, absolutely wiped me out.
The anxiety and depression persisted, plus I felt very, very emotional; I was restless and uneasy and I felt very raw and lost. It was pretty overwhelming.
The headaches continued too, plus the weird response to the Christmas tree: it made me feel very nauseous and made my eyes burn horribly. I love having the Christmas tree up so that didn’t help my mood.
BUPROPION – 150mg (+ PROPRANOLOL (20mg))
I hadn’t wanted to start Bupropion and Propranolol at the same time since it would be impossible to tell if one of the two wasn’t working. So, two weeks in, I added the Propranolol. But while I’d remembered that, I’d lost track of time and forgotten that, after two weeks, I could up the Bupropion. So I was taking the half dose three days longer than I’d intended to (in which I also got my COVID booster).
The trouble sleeping continued. I was finally getting to sleep between two and five in the morning and then, of course, struggling to wake up in the morning. I was completely exhausted and finding it a real struggle to get out of bed at all, something that certainly wasn’t helped by my depression. Feeling depressed, hopeless, overwhelmed, and anxious… getting up and facing the world felt like more than I was capable of.
The nausea was still very present too and there were moments when I had to stop and sit down on the floor and just focus on not throwing up. It was very unpleasant. I couldn’t really handle food, not that I really had any appetite anyway.
I also had a headache that grew into a vicious migraine (with intensely painful light sensitivity). The COVID booster was positively pleasant in comparison. My arm was sore and heavy for a few days but that was it, symptom wise, as far as I could tell.
BUPROPION – 300mg (+ PROPRANOLOL (20mg))
I only managed five days on the full dose of Bupropion. It was clear straight away that it wasn’t agreeing with me.
If I was sleeping, I was sleeping terribly: I was getting to sleep around three at the earliest and then desperately struggling to wake up in the mornings. But between the depression and the anxiety, I found getting out of bed felt overwhelming. The depression had gotten even worse – the worst it’s ever been – and everything just felt hopeless. The self harm urges and suicidal thoughts were relentless. I felt checked out of my life and I just couldn’t engage with anything, even things that I love and things that have previously helped when my depression’s been bad. The anxiety amped up too. I was just overwhelmed, terrified that something bad was going to happen; I felt like I was constantly trying to stop myself from panicking. The nausea and lack of appetite also persisted; I was barely eating anything. But I have to confess that I didn’t really care. Food is so stressful for me that not eating was a relief.
BUPROPION – 150mg (+ PROPRANOLOL (20mg) + LORAZEPAM (2-4mg))
With things getting so bad, my Mum was calling anyone who could help us and my GP told us to go back to the half dose, adding Lorazepam to help with the overwhelming anxiety (which apparently not uncommon when taking Bupropion).
At this point, I’d basically stopped getting out of bed, only getting up to have a shower and try to eat something before going back to bed. My anxiety (including racing thoughts, which I’ve only had a handful of times) was so bad and so overwhelming that I just couldn’t engage with anything: everything made my anxiety worse. It messed with my sleep even more and I barely ate at all; just the thought of food made me incredibly nauseous. I had meltdowns and I self harmed (which didn’t actually make me feel any better) and just being up in the daylight made everything so much heavier so I stayed hidden in my darkened room. I was beyond miserable.
Halfway through that week, the Crisis Team (or Assessment and Treatment Team as I believe they’re formally called although everyone we spoke to called them the Crisis Team) came out to see me. As nice as they were, I’m not really sure what the point of it was. The guy wanted to make sure I was eating at least a bit; he wanted to know about my anxiety and depression; he wanted to know whether I was having thoughts of self harming and suicide, although he didn’t ask if I was planning on acting on those thoughts. And then he rambled a bit about me being monitored over the medication change. I’m not sure what good that would do. I’ve changed medications so many times now; I’d just be doing what I do every single time but with someone coming to see me everyday. How was that supposed to help? What was that going to achieve? They offered to refer us to one of their psychiatrists, which my Mum asked them to so so that we could find out whether, at this point, there was any point in continuing with the Bupropion or whether I should start coming off it officially. As I said, they were nice but it was a pretty frustrating and upsetting experience and I just wanted to cry. I wrote in my diary afterwards: “Oh my fucking god, I can’t keep feeling like this every day, over and over again. It just makes me want to tear my hair out and rip my skin off and scream until my throat tears.”
Over the rest of the week, I continued to sleep badly and struggle to wake up. I lay in bed all day, my brain just spinning out of control: my thoughts felt very chaotic and it was all just big, overwhelming feelings that I couldn’t make sense of. I felt like I was losing control of my mind – like I was just a spectator – and I felt like I couldn’t breathe. And I couldn’t stop crying. I was depressed, anxious (by the end of the week, I was up to 4mg of Lorazepam daily – prompted by calls to 111 and then my psychiatrist – although I was still paralysingly anxious), terrified, miserable, and exhausted: those seem to be the words I wrote down the most. Eating was an ongoing struggle, although the nausea had finally dissipated (for the most part).
After speaking to my Mum, my psychiatrist recommended I come off the Bupropion and, with my depression so bad, go back to an MAOI antidepressant since we’ve had the most success with them. I wasn’t thrilled by that plan (I’m still not wild about it) because the Phenelzine isn’t great, plus it massively limits the options for ADHD medication. But there don’t seem to be any other available options so I just went with it. With the two week wash out period, I didn’t have to make the decision straight away.
WEEK 1 (20mg Propranolol + 4mg Lorazepam)
My sleeping schedule got worse: it was taking longer and longer to get to sleep until I was eventually drifting off at around five in the morning. That, of course, meant I was waking up later. I didn’t really mind that: I didn’t really want to be awake anyway and being awake in the dark didn’t feel quite as difficult as it did in the daylight hours. I did get up each day – to shower, to try to eat – but it was a miserable experience that usually resulted in tears. I felt completely overwhelmed and just didn’t know what to do with myself but I was still restless and felt like I was constantly on the verge of a meltdown. Even though I wasn’t doing anything, I was completely exhausted, which just made the inability to get to sleep that much more frustrating.
I had periods of intense anxiety but for the most part, the depression was overwhelming and suffocating. I felt separate and disconnected from my life, and like I couldn’t get back to it. I felt completely hopeless and the suicidal thoughts continued. I was completely miserable.
WEEK 2 (20mg Propranolol + 4mg Lorazepam)
I was constantly exhausted, barely eating and my sleeping just kept getting worse, getting more screwed up and out of sync. I took sleeping pills, I tried every strategy that’s ever worked, every possible combination… but I just couldn’t get to sleep; it just got later and later until I was going to sleep at eight in the morning. It was miserable. I was miserable: I was in tears multiple times every day; I was incredibly anxious (I’m not convinced the Lorazepam was doing anything); I was deeply depressed and consistently having suicidal thoughts and thoughts about self harming (which I did act on although it didn’t make me feel any better). It was the worst I’d ever felt. Everything just felt impossible, overwhelming and hopeless and I just didn’t know how to act like that wasn’t how I felt. It was all too much and I just didn’t know what to do with myself: I couldn’t engage or connect with anything. Everything felt wrong and uncomfortable and sad.
It’s a really hard state of mind to describe so I thought I’d include some of the things I wrote in my diary during the week:
So it was a rough week after a rough few months. The wash out period is up but I still don’t know what to do. There are so many reasons why I don’t want to go back to MAOIs – messy, convoluted reasons that I don’t even know how to put into words – but there doesn’t seem to be another option. I still don’t want to take them though. I feel completely stuck.
This was several weeks ago now and as much as I didn’t want to go back to an MAOI, I had a bit of a breakdown and started taking a new antidepressant, Moclobemide. I was desperate. And, as I said, things aren’t great but they are better than they were. I still feel very conflicted about what to do around the medication and the clash between the medications for each condition but at least I am feeling clearer and not so completely overwhelmed.
Category: adhd, anxiety, depression, emotions, food, medication, meltdowns, mental health, self harm, sleep, suicide, treatment Tagged: adhd, adhd medication, anti-anxiety medication, antidepressants, anxiety, anxiety disorder, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, bupropion, depression, exhaustion, gad, generalised anxiety disorder, generalized anxiety disorder, insomnia, lorazepam, loss of appetite, maoi, medication, medication change, medication review, meltdown, meltdowns, mental health, mental illness, migraine, migraines, moclobemide, monoamine oxidase inhibitors, nausea, neurodivergent, propranolol, self harm, side effects, suicidal, suicidal thoughts, trigger warning, tw, xaggitin, xaggitin xl
Posted on January 9, 2021
So that’s it. The third semester of my Masters is officially completed. As I write this, I have just submitted my assessment work and have a week before the next semester starts (online, due to the current number of COVID cases). I have some reading to do for the next module but before I dive into that, I just want to reflect on the last semester, the ups and downs, and all that I’ve learned.
It began with a great deal of stress, and long before the semester was due to start. At the beginning of the pandemic, I’d said I absolutely didn’t want to do my course online and would defer if that was going to be the case. But as the new semester drew closer, I got more and more anxious. I didn’t want to defer but I also didn’t feel safe commuting to and then through London for two hours of classes a week so, after many hours of talking with my family (and many tears), I decided that the best option was to attend as an online student. It was a sad decision to make because I’ve always loved the group dynamic of my university classes but it just didn’t feel safe or responsible to attend in the way I’d have to.
And then, in the week or so before classes started, there was a great deal of stress around getting the right timetable as an online student: conflicting information, the classes not showing up on my online timetable, and so on. When things were already so stressful (the anxiety about the pandemic aside, I was really nervous about whether or not I was mentally up to doing the module with my mental health so fragile), this just triggered a series of really terrible meltdowns. It was a horrible and exhausting way to start the semester, especially the one I’d always been most anxious about: Musical Language in Songwriting. Music theory has never been a strong area of mine so the idea of experimenting with these concepts was very daunting.
While this was very distressing, I don’t want to point fingers or place blame. These are hugely difficult times and no university – no institution – is perfect, even when the world is running according to what we consider to be normal. So it’s not fair to expect everything to run smoothly. And now that I’m on the other side of the semester, I can only sing the praises of my tutors: over and over, I’ve seen just how dedicated, hardworking, passionate, and supportive they are. There have been bumps in the road, of course, but even with the sheer amount of stress they’re under – and that’s just the stress I’m aware of as a student – I’ve been consistently met with warmth, thoughtfulness, and understanding. And I’m just so beyond grateful for that. I couldn’t have completed this semester without their support.
I wrote about my first week back (here) but to summarise, it was a challenge. My uni were using a blended model of teaching so the lecture was online and the workshop was onsite (but as an online student, I was looped in through the online learning platform). The lectures were straightforward since we were all online, and productive once we got into a rhythm and stopped accidentally interrupting each other. The workshop, however, was more complicated: between not physically being there and only being able to communicate through the tutor’s laptop, plus not being able to see or really hear my course mates, it was very difficult. But I spoke to my tutor after the class and the next workshop was better.
I’d thought we were making progress but then suddenly, between week two and week three, I was moved to a new workshop group, an online group made up of just the online students. That really threw me; the constant uncertainty was doing a real number on my mental health. I was really struggling during this time: my anxiety over the pandemic, the expectations of the course, and being able to do well in the module was incredibly high; I was hugely frustrated with the whole situation; I was feeling overwhelmed by my depression, my low energy levels and side effects of medication… I was constantly in tears, constantly having meltdowns.
But slowly, as things started to settle, my mental state started to settle too. I had a really positive meeting with one of my tutors where he went through the learning outcomes and grading criteria and generally what makes a good assessment portfolio. I’ve found that having a meeting like this early on in the semester both helps me to work on the assignments more effectively and avoids unnecessary anxiety. As I said, I felt really supported throughout this module and I’m so grateful for that, both in terms of the module itself and in terms of the broader picture.
The assignments were challenging and definitely interesting, including a reimagination of a cover, a reimagination of an original song, and a brief that still makes me shudder: a song in an uncommon mode, using both 5/4 and 7/4 time signatures, with extended chords and an example of chromaticism (I struggled particularly with this one). We also had to consider the arrangement of each songs and to an extent, the production. The briefs definitely stretched me and prompted some very interesting songs, many of which I absolutely wouldn’t have written if I’d not done the module. I don’t know if I’ll ever do anything with them but I definitely learned a lot from writing them. Having said that, I did spend a lot of time feeling very unsure of myself and the quality of my work, both in terms of whether they were actually good songs and whether they were fulfilling the grading criteria.
About halfway through the semester, my course mates from the year before (those who’d done the Masters full time and completed it in one year rather than two) graduated and I joined them for the online ceremony to celebrate them and their achievements. We were all disappointed not to be able to get together to celebrate properly but hopefully that plan is simply postponed rather than cancelled. They all deserve it and it would be so lovely to see them again.
Six (out of twelve) weeks in, I was exhausted all the time. I was also still struggling with the nerve pain in my hand – the pain that I’ve been experiencing since the middle of the first lockdown – which was only getting worse, making it even more difficult to play instruments. I was still waiting for my rheumatology referral – that didn’t come through until the last week of the semester and even now, they still don’t know what the problem is.
The latter half of the semester was much more focussed on the assessment, at least it was for me. I worked on the songs I’d already written during the module before taking them into class again for more feedback so that I could get them as good as possible for submission (although I did impulsively write a rap that ended up being part of my portfolio). I also worked on the other part of the assessment: a short essay, analysing one of the songs I’d written and how I’d employed different aspects of musical language. I worked as hard as I could, determined to have at least most of the work done by Christmas so that I could have a break of some kind before the next semester started, unlike last year when I had to work straight through the Christmas break.
Despite the meeting early in the semester, I found it very difficult to judge whether I was doing ‘well enough.’ The learning outcomes and grading criteria felt incredibly vague and therefore not at all Autism-friendly, causing me a lot of anxiety. I mean, it’s Masters level and they have to cover all of the different styles of songwriting on the course so I do understand it but as an autistic person, it’s been one of the hardest parts of the course (uncertainty being a common area of difficulty for autistic individuals). I had multiple conversations with my tutors about it and although they noted it, it’s not like they could change them in the middle of the semester. I guess we’ll see if anything changes over time. I did get useful feedback on my songs and essay during those conversations but I still have no idea what to expect grade-wise.
By the end of the semester, I was almost done: I was making final edits to the songs and trying to cut down the word count of my essay. But the last week was hectic to say the least. I had a really lovely last day of classes – both groups I was a part of were so positive and fun to be a part of – and then a final one-on-one session with my tutor for any last feedback before the deadline (the first day after the Christmas break). That was really useful, especially as I was so close to finishing everything. I also had a meeting with my tutor for the next semester, so that I could prepare for it or, at the very least, get my head around what the expectations of the module were. Again, another attempt at reducing unnecessary anxiety, plus it was really nice to see him again; he’s taught me on and off since my first day on the BA (he actually auditioned me for the BA!) and he’s such a great teacher. I feel like he gets me and my approach to songwriting and I’m really excited to have him as a tutor again. And the semester itself ended for me with a meeting on behalf of ICMP where a group of us (students from different courses) spoke about our experience with the university. That felt good; I only ever want to leave things better than I found them and that meeting felt like an opportunity to do that. It’s re-inspired me to keep trying, even if I didn’t really need to be re-inspired.
I had one last session with Richard, sorted out a couple of technical issues with the tracks, and then I spent every day working non-stop. On Christmas Eve, I managed to finish everything. I was done – or had done as much as I could do without endlessly obsessing over every tiny detail – and could have an actual break between semesters. I really needed that and I had a good Christmas, despite everything going on. I wish I could’ve been with more of my family but we all recognised how risky that was. So we had a truly bizarre and hilarious Christmas Quiz and Zoom call and then dinner within our bubbles; it wasn’t perfect but I think we truly made the most of it and I really enjoyed it, even if there were difficult moments.
After a pretty restful break, I logged onto the student gateway to upload all of my work on New Year’s Day, several days before the deadline. But, for some unknown reason, the pages weren’t set up in a way that allowed us to upload the work required for the assessment. I had multiple meltdowns over it and after a handful of emails to various tutors, I was given an alternate way to submit. I shouldn’t really be surprised: this has happened multiple times and with the deadlines always on the first day back, there’s usually no one to contact for help. I was lucky to have had a tutor respond. Fortunately, it did get fixed on the morning of the deadline and we were all able (and asked) to submit. They usually fix it in time but it’s very stressful every time.
As I’ve already said, I’d been dreading this module but I ended up enjoying it a lot than I’d expected. It was still stressful but the tutors were incredibly supportive and my course mates were engaged and encouraging. It felt safe to bring in whatever I’d written, even if I really wasn’t sure about it (the rap, for example). It is hard being part time though, just as much this year as it was last year: for me at least, I’ve always felt ‘other’ to a certain degree, excluded (unintentionally) from the main group, the full-timers. Rather than being part of two years worth of Masters students, I’ve just felt not quite a part of either. It’s hard to explain but I’ve just never felt truly part of the course, like I’m always missing out on something because I’m only there (or ‘there’) half of the time. Does that make sense? I’m not even sure. Being part time has definitely been better for my mental health but it has made things more complex socially.
But ultimately, the module has been a good experience (although I’m sure my perspective on it will be affected to a certain degree by the grade I get). I think the biggest thing I’ve learned, or the skill that has developed the most, is how my decisions serve the song I’m writing; it’s made me much more conscious of my choices and it made me realise how much I already knew about the techniques we were using but just using them instinctively rather than deliberately. So that was surprising but it has opened up doors in my songwriting.
It was also exciting to start looking ahead to the next two modules: we had extracurricular sessions where students from last year presented their final projects to give us an idea of what that last module would be like. It was reassuring because it made the whole thing feel much more clear and less like a huge, intangible, overwhelming pile of work. Now it feels like an exciting challenge and I can’t wait to get started, regardless of the stress and anxiety involved.
Category: anxiety, autism, chronic fatigue, covid-19 pandemic, holidays, meltdowns, mental health, music, university Tagged: anxiety, arrangement, asd, assessment, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, autistic student, cfs, christmas, christmas break, christmas holiday, chronic fatigue, chronic fatigue, coronavirus, covid-19, depression, essay, essay writing, fatigue, graduation, graduation ceremony, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, meltdown, meltdowns, mental health, mental illness, music language in songwriting, music theory, musical arrangement, musical language, online classes, online learning, online university, pandemic, pandemic 2020, pandemic anxiety, part time masters student, part time student, songwriting, stress, tutor, tutors, university
Posted on November 14, 2020
While I was going to write a series of posts about the events of this week, the way all of those events played out made that much more difficult than I’d anticipated so, after a lot of thought, I decided to put them all together in one post because I still really wanted to write about all of them. It was an intense week, with some really big events and a lot of anxiety.
The week in this post started on Monday 2nd November and ended on Sunday 8th November 2020, the autumn semester’s reading week. It involved an Autism webinar, the US election, Bonfire night, as well as the beginning of England’s second national lockdown.
My Mum was visiting her Mum, masked, social distanced, and outside where possible before we all go into lockdown again. So I was all on my lonesome, which is pretty unusual these days. Apart from the cats. Once Queen Lucy realised I was awake, she was climbing all over me, very clearly telling me that it was time for breakfast. So I dragged myself out of bed and went downstairs to feed the pride.
I spent the morning doing various admin tasks like replying to emails and finishing a couple of blog posts before having a shower, getting back to my computer in time to get a ticket to Tim Minchin’s upcoming livestream for his new album, Apart Together. It’s scheduled for the end of November so that will be something really fun to look forward to during lockdown. In the description of the event, they describe him as an ‘inimitable poly-talent,’ which is absolutely true and I just can’t help thinking what it would be like to be described that way. What an awesome compliment.
That done, I settled into my little home studio space and got to work. There were a handful of songs that I had been neglecting and so I finally forced myself to stop procrastinating and prioritising other things and spent several hours recording vocals for them. It’s stupid: I don’t know why I put off recording vocals so much. I guess they make me feel anxious and insecure, like I’ll listen to myself and suddenly realise what a terrible singer I am (which, yes, I recognise is ridiculous because while I know I’m not the greatest singer out there, I know I’m not terrible). But anyway, I always put it off and then when I finally do it, I remember how much I enjoy it. As I said… ridiculous, and yet we’ve all had that experience in one way or another.
It was a challenge because it was really windy outside, so windy that the microphone was picking it up and I had to delete multiple takes because the wind noise was so obtrusive. And then, Lucy decided that she was being left out of something important. I managed to convince her to lie on my bed (instead of climbing all over me) but even her stretching and clawing the duvet was making it into the recordings. I ended up barricading myself in my bedroom for the rest of the tracks. Fortunately, she (and the others) didn’t start yowling until just as I was finishing up so I was able get everything done without the feline interruptions. I think they’ve developed a form of separation anxiety after having me at their complete disposal (by which I mean I’m available to be sat on at almost all times) since late February and the closed door was just unacceptable.
I had a short time to rest and order my thoughts (change hats, if you will) before signing into an online meeting about an upcoming conference that I’m a panelist for. Just typing that out is wild to me; this is something I’ve always wanted to do. I mean, ideally it would’ve been on a literal panel, talking directly to people, rather than through a screen, but I’m not complaining. I’m nervous but excited. The other panelists were all really nice and we had a good discussion and planning session.
I was pretty knackered after all of that so I lay down on the sofa and attempted to do some blog post writing. I didn’t get very far – I think I was just too tired – but I made progress on a couple of posts so that was something.
I had a place on a webinar in the evening about Autism in young people but as hard as I tried, I couldn’t get into it and the anxiety and frustration and confusion – likely combined with my anxiety about the pandemic, the US election, and the impending lockdown – resulted in a lot of distress. I wouldn’t call it a panic attack or a meltdown but it was a serious overload of difficult and upsetting feelings. I talked to Mum about it afterwards and she suggested emailing them to see if they had a recording I could watch since I’d paid for a ticket and then not been able to attend. So that was a job for the next morning; I was too upset and all over the place to try and write a coherent email.
Despite not attending the webinar, I ended up staying up far too late, bouncing between writing for my blog and in my diary. Lucy curled up with me and, completely exhausted, I was asleep in a matter of minutes.
I woke up with a headache that even my prescription painkillers couldn’t kick. I’d had a busy day planned out, with the US election the next day (I knew it would dramatically affect my emotions and therefore my ability to work so I’d planned to get as much done beforehand as possible). I tried to get up and get things done but I just felt so unwell that I ended up shifting my week around to give myself a lighter day. I just couldn’t do the more demanding tasks I’d planned to do.
I didn’t manage to get much done that morning. My head was pounding and I was tired and I just couldn’t concentrate enough to get as much done as I would’ve liked to. I did start the essay for this module for the Masters, working out the different sections and the elements I could talk the most about. I also managed a little bit of blog writing; I swear, just as I think I have a decent buffer of posts, they’re gone and I’m panic writing to make sure that I have something to post (not that I’m panic writing this post – I just thought I had more posts lined up than I do).
Early afternoon, I joined the the video call set up by a group from my Masters classes last year (they were the full timers who’d done the whole course in one year while, as a part timer, I’m taking two years to do all of the modules) to watch their online graduation ceremony. As far as I know, everyone was watching the ceremony but not everyone was in the video call, including one of my best friends but we were chatting via WhatsApp. When the ceremony ended, the university had organised video calls for each course and so the majority of the full timers logged on, plus a few of the part timers as well as our course leader to celebrate together. Some of the other tutors on our course also dropped in briefly to say hi. It was so nice to see them all. It feels like so long since I’ve seen most of them and I do miss them; I feel like we had a really lovely dynamic. We chatted and caught up and had a drink together and the whole thing ended up going on for about three hours. I was pretty social-ed out afterwards but it had been so nice to see everyone and celebrate their achievements.
Not long after we all hung up, my Mum took Lucy to the vet as I think the cysts she developed a few months ago have returned. They were back within the hour and the vet had confirmed my theory. The recurrence has also confirmed where they’re coming from and so she’s booked in for surgery on the 12th to remove the cysts and hopefully fix the problem. Apparently it’s not much more complicated than the previous surgery and she’s a very healthy cat so there’s no reason to worry unduly. He’s a great vet: we haven’t known him long at all and yet he already takes my high levels of anxiety into account when giving explanations and laying out the options. I really, really appreciate that.
Lucy has never seemed distressed by going to the vet but she’s always very pleased to be home. She often comes and cuddles up with me if possible though. I don’t know if she feels in need of affection, if she was trying to get rid of the unfamiliar smell of the vet, or whatever but it was very cute.
We weren’t confident about the support bubble rules going into the second lockdown so one of my other parents (who we’re in a support bubble with) came over for the evening and we hung out, had dinner, and watched some TV together. It was really nice and I think we all needed it.
Throughout the afternoon and evening, I’d been working on a personal essay to go out as part of the campaign for my recent single, ‘Honest,’ and I finished it at around eleven. I could barely keep my eyes open by that point but I thought it was at the very least decent, as did my Mum when she proofed it for me – I’ve had much more positive feedback since, which has been good for my confidence as I was feeling quite insecure about it. But anyway, given how tired I was, I decided to leave it as it was and have another look at it in the morning before sending it off.
I’d been doing my best not to think about the US election all day, avoiding social media as much as possible, but when I went to bed, all the anxiety rushed in. I was so terrified of Trump getting in again; I was almost overwhelmed by the dread of waking up to that as the result. As hard as I tried, I couldn’t relax enough to sleep and ended up taking both my anti-anxiety medication and a sleeping pill.
While I think we all felt that it was unlikely we’d wake up to an official result, it was nonetheless tough to wake up and see that it still wasn’t over. But worse, was that it could still go either way when I checked the news first thing. I saw this meme making the rounds on social media and it felt very relevant; I’m pretty sure that this was how my face looked.
It ended up being a long, anxious day of refreshing the various news sites, waiting for updates and not getting much done. I did manage to edit the personal essay and send it off but other than that, I just bounced between writing blog posts and working on my Masters essay without making much progress in either. I was just so anxious; I felt like I couldn’t breathe. I may not be American nor do I live in the US but I have friends and family who do and the political decisions made there have the potential to ripple so far out, affecting so many countries and so many people. So to say I was stressing would be a massive understatement.
Slowly though, the numbers did start to shift in favour of Biden more and more. It wasn’t a done deal by any means but it was going in the right direction. I was refreshing my phone relentlessly; I could barely concentrate for five minutes without having to check to see if there was an update.
In the evening, Mum and I had dinner and then went for one last swim before lockdown closed all the gyms. We tried to make it as safe as possible, going close to their closing time when it’s always quiet. Plus they keep all the doors open to help with the ventilation. I still almost fell apart in the changing room because the experience was so stressful – whether it would’ve been a meltdown or an anxiety attack, I don’t know. But the staff helped us out and the few people swimming were very obliging about making it possible to put as much distance between all of us as possible.
We had a really good swim, including some of the new hydrotherapy exercises, and by the time we got home, Biden only needed six electoral votes to win and Trump needed fifty six. I was so excited; I actually felt like I might throw up from the anticipation. Again, I found it very difficult to sleep.
And so begins Lockdown 2.0…
I slept long and deep and when I did finally wake up, I didn’t get up for quite a while, going through the election coverage. The numbers hadn’t moved and it was making me edgy.
I got up, had breakfast and a shower, and got down to working on my essay. I’d only been working on it for about half an hour though when a friend called and we ended up talking for over an hour. It might not have been the way I’d planned my morning but it was really good to have that chat; I felt better for it.
When we hung up, I managed to do a bit more work on my essay before getting myself made up to do some filming. It’s getting dark so early now that I couldn’t wait any longer or I’d lose the light. I set up my little corner (I’d love to have a more permanent space at some point) and filmed some bits and pieces for the ‘Honest’ single campaign. It was a bit of a struggle – cold and uncomfortable and the cats wouldn’t leave me alone – but eventually I got them all done, which was an important job to have ticked off my list.
That done, I went back to my uni work. I spent most of the afternoon working on one of my song assignments: a reimagination of one of my own songs. It’s weirdly hard: you spend so much time trying to make a song perfect and then you have to turn around and create something entirely new from it, bring out a different emotion or try it out in a different genre. I took this really big, fiesty pop song that had this whole ‘I don’t need you’ vibe and turned it into this quiet piano song that was based on the moment of that realisation when it’s still fragile and tentative. I worked on changing the chords and then recorded them but they were still just one chord per bar; I planned to take it to a friend who is a much better piano player than me to help me expand on it, breaking up the chords and changing it a little for each section to keep it engaging since it was just going to be piano and vocal.
I was just finishing and stretching out on the sofa to relax when the fireworks started going off. I hate Bonfire Night. If you’ve read this post, you’ll know why but the short version is that, not only do fireworks massively trigger the noise sensitivity associated with my ASD, I had a firework thrown at me when I was at the cinema as a teenager. So fireworks make me very anxious and the more there are, the more anxious I get.
I was doing okay: I’d done some blog writing, Mum and I had had dinner in front of Legally Blonde (a friend of mine has been trying to get me to watch it for ages, ever since I’d said that I’d never seen it), but then excruciatingly loud fireworks (that we later found out were being let off a few gardens down from ours) started going off. It could’ve been machine gun fire. The sound triggered one of the worst meltdowns I’ve ever had: I was shaking, hyperventilating, sobbing, screaming (apparently I was screaming ‘stop’ over and over but I never really remember meltdowns afterwards), pulling out my hair to the extent that I was drawing blood… I have no idea how long it went on for but it felt like it could’ve been an hour. Eventually it stopped but meltdowns – my meltdowns at least (I don’t want to speak for anyone else’s experience) – often take a while to settle. I’d barely started to relax when a few minutes later, it all stared again and re-triggered the meltdown. Even after they did finally stop, it was still a long time before I was responsive again, able to interact with my surroundings, able to talk again. It was horrific. It was absolutely horrific.
I have no idea how much time that ate up, just that I was absolutely drained afterwards and barely able to sit up on the sofa. We finished the movie (I liked it for the most part but there’s a really problematic scene where one of the lawyers tricks a gay man into outing himself in public, which is just not okay – I get that it was almost twenty years ago but that doesn’t make it comfortable to watch) and headed for bed. The one thing I will say about it being Bonfire Night was that one of my cats, Sooty (pictured below), stayed with me all evening, snuggled up nice and close. I don’t know if she understood my distress or whether she, herself, needed some comfort but it was very nice to have her with me all evening. Nothing really helps with the meltdowns but it did help before when it was the odd bang and after when I was a collapsed on the sofa. She was an excellent little companion.
Despite being so exhausted by the meltdown, I couldn’t sleep, no matter what I did. Maybe it was adrenaline, maybe it was fight or flight… I don’t know. But I couldn’t fully relax for hours, even with the help of a sleeping pill. I think I eventually went to sleep at some point between two thirty and three.
I struggled up the next morning and after a while, decided to post about the experience. I’d seen #banthefireworks and similar hashtags trending on Twitter the night before, mainly to do with how traumatising they are for pets and for wildlife. It was, however, the first time I’d seen people with sensory issues and Autism mentioned as well though, which felt like quite a big deal. I’d been too out of it the night before to write anything at all but with my head a little clearer, I thought that maybe it could be a good idea and maybe raise some awareness about what the experience of Bonfire Night (and fireworks in general) is like as an autistic person. So I posted this on Twitter and on my Instagram stories:
I actually got a really lovely response with a handful of likes and kind, supportive comments.
I got up and got myself ready for the day and settled down to do some blog post writing. I was feeling very fragile after the meltdown(s) the night before so I put on one of the movies that I discovered during the first lockdown and ended up watching a lot because it just feels good. It’s called ‘Isn’t It Romantic’ with Rebel Wilson. I’m generally not a rom-com fan and I hadn’t seen Rebel Wilson in a role that didn’t make me cringe so I was initially wary when my friend recommended it but I ended up loving it. It’s just the ultimate feel good movie. So I had that on in the background as I tried to write (my thoughts always feel kind of fuzzy and not quite connected after a meltdown, sometimes for a few hours and sometimes for days – it can get really upsetting if I spend too much time thinking about it; feeling like your brain doesn’t work just feels so horrible and scary).
Mid afternoon, I had a session with my therapist. I haven’t ‘seen’ her for a while so we had quite a bit of catching up to do. We talked in depth about the night before, as I usually need to after an experience like that. I feel pretty lucky that I had a therapy session within less than twenty four hours, even if it was still very raw. But better that than in a week or two. The other main thing we talked about was how I’m struggling more than usual with my OCD: with the new semester of uni and the promotion of ‘Honest,’ it’s been really hard to find the time and emotional energy to keep up with my diary (for those unfamiliar, my OCD manifests as a compulsive need to write everything down. The overwhelming anxiety and pressure to keep up and do well in my Masters and what is effectively my job seems to be the only thing that can overpower my compulsive writing but then the anxiety around that only builds and builds until I feel like I can’t breathe, like my mind is coming apart and I’m no longer able to form coherent thought processes. We spent a while talking about that and about starting to tackle it as an issue, something we haven’t done because the pandemic has had such an impact on my mental health. It was an exhausting session but it was good to see her and hopefully, in therapy at least, I’m moving out of the frozen state I’ve been in since the pandemic hit the UK. I’m reluctant to commit to that as a statement but I’m cautiously optimistic.
I was pretty much done after that; I didn’t have any energy left. I posted a video to remind people about the new single but that was pretty much all I could manage for the rest of the day.
Since I was too tired to do anything, I ended up watching a new film, Inheritance. The trailer had looked good and while it wasn’t the best film ever, I thought the acting – especially the scenes that involved just Lily Collins and Simon Pegg in a room – was really good and I enjoyed the twists and turns. It was very dark though so I can definitely see it appealing to some and really not to others.
While the fireworks weren’t anywhere near as bad as the night before, people were still setting them off throughout the evening, which really heightened my anxiety. I could barely eat; it felt like my throat was closing up and swallowing was actively uncomfortable.
I spent the evening bouncing between trying to write blog posts and trying to write my diary, not achieving much with either. Again, I think I was just too tired. But it was still a bit too early to go to bed and I wanted to try and do something, even if it wasn’t much.
I FaceTimed with one of my parents before going to bed, which was really nice and then, during the call, I got an email saying that I’d got a ticket to Halsey’s upcoming livestream for the launch of her new poetry book, I Would Leave Me If I Could, which was really, really excited. And when I went to bed around eleven, Biden was very close to winning. So that was a good mental state to be going to bed with.
I struggled up at nine thirty and got straight to work, recording vocals for the reimagination of my song before my session with Richard. That went pretty quickly and smoothly because I was fairly solid in the new melody. I think it’s pretty good, although I was a bit concerned that the rhythm of the melody wasn’t that different from the original. I didn’t have the time to rework it so I thought I’d take that to class and ask for advice, both in terms of whether they thought it was a problem and how I should go about changing it if it was.
That done, I had a shower and breakfast, published my blog post about going back to the gym (pre this new lockdown), and then logged into Zoom for my session with Richard. We spent the next three hours working on the reimagination of my song and of the cover song. I found it quite frustrating since it was mainly arrangement and production based, so all I could do was offer direction and suggestions but Richard had to do all of the physical work, considering the Logic project was on his screen. This is one of the things I find hardest about collaboration via programs like Zoom: you can’t just take over from one another, swap chairs or instruments, or even point to things on the screen. Sometimes I end up finding it hard to engage and sometimes I just end up wanting to scream because I feel so limited. Most of the time it’s fine and I’ll gratefully accept the fact that we can work long distance at all but every now and then, the frustration just gets too much.
After hanging up, I put Friends on for background noise and spent a few hours working on upcoming blog posts.
I wasn’t refreshing the news as obsessively anymore so I didn’t discover it for myself. I got a text from Richard at 4:28pm with a screenshot of the BBC News announcement. I actually shrieked and shouted to Mum to tell her. I was positively giddy with relief: I laughed hysterically and then I just started crying because I was just so overwhelmed with so many emotions. It was like I could breathe again. And considering that’s how I felt when it isn’t my country or government, I can only imagine how everyone in America – those who had worked so hard to get Trump out and Biden in – were feeling.
The majority of people that I was seeing on social media were hysterical with joy and it being such a historic moment, I felt that I really wanted to add my own to mark the occasion…
We were just finishing dinner when the fireworks started going off. They weren’t bad enough to trigger a meltdown but they did make me anxious, cause me to flinch and lose my train of thought. I was going to be very pleased when those few nights of fireworks were over.
We had a quiet evening of TV (me and Mum are currently rewatching Hustle – it’s easy to watch but still such a good show) and I tried to do some gentle work on my Masters essay but I ended up in a state about all the musical theory language that I was supposed to be using but didn’t understand, being a self taught musician rather than having had lots of lessons or doing grades. So that was very stressful and I got very upset so I emailed my tutors to ask for some guidance.
I was still buzzing about the election news but it had been somewhat dampened (temporarily) by my uni anxiety so I went to bed just feeling like a complete mess. I was exhausted and overwhelmed and anxious and it was all just too much. By that point, I needed the emotional fresh start a new day would give me.
It wasn’t easy but I managed to wake up around eight thirty. I got distracted from getting up when I checked my social media though, looking through all of the posts about Biden getting in. There were a few negative posts but on the whole, my feed was mostly filled with positive ones, which was a nice way to start the day. Obviously our social media isn’t an objective view of any subject so I wasn’t going to base my knowledge of the election outcome on the reactions I was seeing but seeing so much positivity and joy on my timeline was a real lift in a very difficult week.
Eventually I tore myself away, had a shower and breakfast, and got down to work. I spent the morning working on blog posts and doing some Christmas present planning and shopping. And then I dedicated the afternoon to preparing for the conference. It’s a conference about University and the Covid-19 pandemic and I’m on a panel discussing autistic students and coping with change. So I wrote down all my thoughts, organised and input them into the powerpoint we would be displaying. It took a couple of hours but I was pleased with the work I’d done. Now I just have to pull together my notes for when it’s my turn to speak but I didn’t want to do that until we’d all met again and signed off on the powerpoint as a group.
I had some chill time before one of my other parents arrived for our weekly evening together (she’s in our bubble and it seems that bubbles – those that bring a household and a single person together anyway – are still permitted during this lockdown). We’d decided, given that we were already in a bubble and none of us do anything out but the essentials, that we felt safe to continuing seeing each other.
We had a really good evening. She’s a music teacher (or at least that’s one of her hats) and has been for decades so she was able to help me out with my essay: we went through the harmonic, melodic, and rhythmic elements of every section of the song and it was kind of hilarious how consistent I’d been without being aware of it: almost every element built on the idea of tension and release, except the release never comes. Non-diatonic chords, uncommon intervals, irregular time signatures, syncopation for days… The song had been an experiment in the weird and it was certainly that.
We had dinner with a movie (we missed the new episode of His Dark Materials because I got the time wrong – me and Mum made a note to watch it the next day) and while my parents were content to relax with the rest of the movie, I went back to blog writing. My brain struggles to sit still, to do one thing without getting distracted or bored. So I kept writing, with Sooty curled up between my knees. It seems to be her new favourite place.
Once it was just me and Mum again, we took our time winding down and then headed for bed. I checked my phone one last time and saw that, as promised if Biden won the election, Kalie Shorr had released a worktape of one of her unreleased songs, ‘Strawberry Blonde.’ It’s such a great song. Her lyric writing especially just blows my mind:
“…Sometimes I still get wasted
To stop thinking ‘bout the time I wasted
I started taking long walks again
And I started talking to God again
You’d hardly recognise me with my rose-coloured glasses gone
You might find it surprising I stopped taking shit from anyone
I got a new tattoo so you don’t know what I look like when my clothes are off
And I went strawberry blonde…”
I learn so much from her songs and I’d love to have the confidence she has in her writing style, in herself as an artist and as a person it seems. She is one of the people I want to write with most; I feel like it would just be so much fun and I’d learn so much. Plus I think we could write one badass song. She’s such an inspiration to me and has been ever since I met her and started following her career in 2016. I don’t know if she knows what an impact – what a positive impact – she’s had on my life.
My brain was going off like fireworks (ironic, I know, but it’s the only metaphor I’ve found that fits) after hearing that song, lyrics bursting into life behind my eyes, which of course I had to write down so as not to forget them. My brain is often at its most active and creative at night. So it took me a long time to get to sleep.
So it was a hell of a week. There was good, bad, really good, and really bad. I can’t say whether it was the week I expected or not because I had no idea what the week was going to look like, mostly due to the US election. Most of all it was exhausting. The new week felt daunting, going in so depleted, but it’s not the first time and it won’t be the last.
I hope this was interesting; I hope you enjoyed it. And I’ll see you in the next post.
Category: about me, animals, anxiety, autism, chronic fatigue, covid-19 pandemic, diagnosis, emotions, event, favourites, holidays, meltdowns, mental health, music, ocd, therapy, university, video, writing Tagged: a week in my life, alt pop, anti anxiety medication, anxiety, asd, autism, autism spectrum disorder, autism webinar, autistic, autistic adult, autistic blogger, autistic meltdown, autistic meltdowns, autistic student, best friends, blogger, blogging, bonfire night, cat, cfs, christmas, chronic fatigue, chronic fatigue, collaboration, compulsive writing, conference, coronavirus, covid-19, cowriting session, diary writing, donald trump, essay, essay writing, exhaustion, family, family of cats, fatigue, film, fireworks, graduation, graduation 2020, graduation celebration, graduation ceremony, gym, halsey, honest, honest ep, honest single, i would leave me if i could, indie pop, inheritance, inspiration, isn't it romantic, joe biden, kalie shorr, kitten, legally blonde, livestream, lockdown, lockdown 2.0, lockdown 2020, ma student, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, meltdown, meltdowns, meme, music theory, musical theory, noise sensitivity, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, pandemic anxiety, panel, part time masters student, personal essay, piano, poetry, poetry book, president, president biden, production, recording, reimagination, reimagined, richard marc, singersongwriter, singing, social bubble, social bubbles, social media, songwriter, songwriting, songwriting assignment, songwriting challenge, songwriting inspiration, songwriting session, strawberry blonde, support bubble, support bubbles, swimming, swimming pool, therapy, tim minchin, university, us election, us election 2020, vet, webinar, week in my life, working, writing, writing session, zoom, zoom calls, zoom writing
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.