Posted on February 20, 2021
It’s a whole new year, a whole new semester… and a whole new lockdown. So I guess it seemed as good a time as any to do another of these week-in-my-life posts. A lot has been going on recently so I thought it might be a good week to document, as much for myself as for anyone else; it’s all been a lot to process and I thought this might help with that.
The week in this post began on Monday 1st February and ended on Sunday 7th February 2021.
I usually like to keep Mondays gentle, given that Tuesday is a long day with my uni classes but this Monday was different. I struggled up (I’m naturally a morning person but between my medication and the pandemic, I’m just tired all the time, which makes getting up in the morning a real battle), had a shower, and managed a bit of breakfast before my first official Occupational Therapy session – I’ve had a consultation but this was the first ‘practical’ session, I guess you could call it.
There were still a lot of questions – all the hows and whens and so ons around the pain in my hands – but the therapist also taught me a series of exercises that I should do daily and how they would help with my pain. She also explained how it all linked in with my hypermobility. So it was really helpful and an encouraging step forward after feeling stuck for so long but despite how little I had to do each day, the exercises caused more pain. I’ve been trying to continue with them as the therapist did say that that could happen but it’s hard to motivate yourself to put yourself through pain. I will have had another appointment by the time this goes up so hopefully I’ll have had some advice on this.
She also had some recommendations on private pools that we could book since swimming is the only real exercise I can do, for the lockdown specifically but also to use until the Hydrotherapy referral comes through. She’d also double checked the Pain Management referral to find that it hadn’t reached the department and so pushed it through personally – apparently, because the pain is impeding my education that puts me further up the list than I might’ve been otherwise. So that was all good but the appointment was pretty exhausting. I actually fell asleep for a couple of hours afterwards.
I woke up suddenly and realised I was ten minutes late for my cowriting session with Richard. That startled me awake, I can tell you that. I scrambled up and logged into Zoom. We had a really good session, finishing a song we’d started the previous week, ‘One More Time.’ I really like it and I’ve been singing it, the chorus especially, ever since we wrote it. It’s one of my favourite songs I/we’ve written recently.
With the demo finished, we talked about the upcoming projects we’re working on, alone and together, for our Masters and for our own projects. That was productive as well, although the creating is always my favourite part of any session.
Several of the cats had been hanging out with me the whole time (I think we were on the call for about four hours in total) and they were being ridiculously adorable. Mouse in particular looked very content with the situation. Having them around all of the time is one of the things that has made this last year bearable; I’m beyond grateful for them.
I was exhausted after that and curled up on the sofa with Criminal Minds. I’ve been rewatching it over the last few weeks and I’d forgotten how much I love it, how much I love the characters; I think Emily Prentiss was one of my first Favourites with a capital F TV show characters.
My mind was wandering and I was thinking about one of my current song ideas, one that hasn’t fully revealed itself to me yet, when the perfect hook popped into my head. Unfortunately, before I could even reach for something in order to record it, it was gone. It was infuriating. I must’ve sat there for an hour, retracing every train of thought I could remember having before the hook occurred to me but alas, I couldn’t get it back. And now, of course, I’m convinced it was the perfect idea: just what I needed to make the song work. So that was very frustrating, which didn’t help with how overwhelmed and stressed I’d been feeling over the previous few days. Part of that was due to the results of the last module being released a few days before. I’m often slow to open results – I like to wait for a moment when I’m feeling stable enough to handle a good or a bad result – but I also had three cowrites and a day of classes in the following days so I didn’t want my emotions about the grade to affect those. That said, I couldn’t forget about them completely and the not knowing was stressful.
Eventually I gave up on trying to conjure back up that perfect hook (*sigh*) and did some writing for the blog. I even managed to finish the post I’d been writing about Lucky. That was a hard one to write so I was glad to have it done.
Mum and I had dinner together and then we had a family video chat, one that specifically included my Granny in Australia because it was her birthday. Since it was a milestone birthday, at the very least some of us would’ve been out there to celebrate with her if not for the pandemic, something that’s been hard for all of us but especially the one of my four parents who’s her daughter. So it was hard, but having a video chat was better than nothing and I think we made the most of it.
After we hung up, Mum and I had a gentle evening, continuing with our Criminal Minds rewatch. I also tried to do some catching up with my diary. I’m so far behind now that it’s more like keeping up: I’m just barely managing to keep bullet points as prompts for some imaginary moment in the future when I have the time to go back and write it all out. I’m finding that incredibly stressful because the need to write everything down is only being partially fulfilled, leaving me with so much anxiety that sometimes I’m left feeling suffocated. But that anxiety is constantly battling with the anxieties of other things that HAVE to get done, like my Masters work. There just aren’t enough hours in the day. Plus, a lot of the time, I feel like my brain is wading through treacle, making it even harder to function. My brain feels a bit like it’s been hit by a hurricane; it’s just a chaotic mess and nothing’s where it’s supposed to be or doing what it’s supposed to do.
I went to bed early-ish, early for me anyway, but then I accidentally stayed up for several hours, watching videos on YouTube. One of the upcoming writing briefs for this module is to write a song based on a fictional story and I’ve wanted to write a song about Daisy Johnson from Agents of SHIELD forever so this seems like a good opportunity; maybe a deadline is what I need to make it happen. So watching all of these Daisy Johnson videos on YouTube and listening to the songs that people associate with her is research of sorts. I’m still trying to work out the perspective I want to write the song from, whether it’s about a particular moment in time, or about her emotional journey, but I found several songs that definitely have potential as inspiration. It didn’t exactly help my brain wind down though.
I managed to sleep through all of my alarms, which meant that I was almost an hour behind in getting ready for the day – my uni classes day. So I had one of the fastest showers of my life, put on minimum make up, and inhaled some breakfast, logging on just in time for my first class. Definitely not the most fun or graceful start to a day.
My first class of the day was our workshop, where we present the songs we’ve written based on the techniques we learned in the seminar the previous week. Due to a meltdown, I’d actually missed the seminar, which had been on the techniques of song maps and pyramiding, but after reading the resources and a long discussion with one of my friends who’d been at the seminar, I felt I understood the theory enough to at least attempt to apply it. I’d written one song with Richard and another with one of my coursemates, both of which I really loved. There was only time for one of them, given how many people had brought songs (some days, everyone brings a song and we have to be really efficient whereas on others days, some people haven’t brought a song and there’s more time and people can present both cowrites and songs for their own projects), and the cowrite with my coursemate got chosen. It was well received with a healthy amount of suggestions for improvement, some of which we agreed with and some we didn’t. We’re planning to work on it again soon, since one of the upcoming briefs is to redraft a song.
There were some other really cool songs played during the session but I don’t want to say too much about them since they’re part of other people’s projects. Having said that, my group is packed full of amazing writers so whenever they release music, I’ll be sure to share it on my social media. So check those out if you want to hear about these awesome up and coming artists and writers…
It was a good class but then we had a four hour break before the seminar in the afternoon, starting at 4pm. Tuesdays are hard for me: they’re long and they require a lot of energy and focus, especially the three hour seminar. So I’ve taken to using the break to have a nap to recharge for that class. I slept for almost three hours, had some food, and quickly recapped the notes from the last seminar before we got started again.
We began by discussing what we’d worked on over the previous week – song mapping and pyramiding – and talked about how we’d implemented songs maps into our work, what impact it had had on our writing process, and what we’d struggled with. Having missed the seminar where song maps had been introduced, I’d struggled initially but having incorporated it in the writing of several songs, I do feel like I’m getting more of a feel for it. We had some interesting (and, at points, entertaining) debates over various elements before moving into the new topic: different approaches to cowriting. In groups, we were encouraged to just talk until one of us said something that might make an interesting song and then start writing that song together.
I’d initially been worried about being dropped into a group of people I didn’t know and asked to create something so I’d spoken to my tutor and we’d worked out a solution that I’d be in a group with at least one person I knew. I’m always keen to write with new people but, being autistic, it’s a lot easier and a much more positive and productive experience if I have, at the very least, spoken to them beforehand. So having one person I already knew just created a safety net in case I got overwhelmed or something. I actually knew two people in my group and then there was another guy I hadn’t previously met; we got on really well with lots of laughing and goofing around but we also came up with a really strong concept and started working on the song. So we did pretty well, I think.
When the class ended, at 7pm, I was exhausted but the nap had helped. I wasn’t completely floored like I often am. I even managed to work on a song I’m currently writing, one called, ‘Astronaut.’ I’m usually barely capable of eating dinner and catching up with my diary so that was quite an achievement. The nap had clearly worked wonders.
There wasn’t much left of the evening but my Mum and I had dinner and continued our Criminal Minds rewatch. I also worked on a couple of blog posts before going to bed far too late, as is my norm at the moment. I just get this weird anxiety when I start getting ready for bed. Maybe it’s to do with anxiety about being unable to sleep, maybe it’s anxiety about a period of unproductive time (that’s something I’m struggling with at the moment)… I don’t know. And it just makes it even harder to get to sleep.
It took me a long time to wake up on Wednesday morning; I just couldn’t open my eyes. I feel like I’m having more and more trouble with mornings; my antidepressants are very sedating, which is one of the reasons I’ve been thinking a lot about trying a new medication. It’s just such a tough process and there never seems to be a good time.
When I eventually managed to keep my eyes open for longer than a minute, I forced myself up and had a shower before settling at my desk in the living room. With Criminal Minds as a backdrop, I spent several hours working on blog posts. I struggled to concentrate though because, in the back of my mind, I was aware of the fact that last module’s grades were still waiting to be opened. They’d come out the week before but I’d had three cowrites and a day of classes ahead of me and if the grades were bad, I didn’t know how I’d manage to be present and productive in those sessions. So they were still sitting there, unopened, and I was very aware that I really should open them and look. But it was really hard to make myself do it.
Eventually I did, when Mum went out to do the food shop. It’s not that I didn’t want her to know or anything; I just find it easier to see results, have my initial emotional reaction in private, and process it a bit before sharing the news with people. I was happy with the grade – for the most part (but then I’m a perfectionist and always somewhat disappointed if I don’t do exceptionally, something I think is an unfortunate consequence of being a really high achiever at a young age) – but I did have some issues with the feedback. Reading through the feedback sections, I felt like we hadn’t been assessed on what we’d been told we’d be assessed on. The more I thought about it, the more upset I got. I’d worked so hard and talked to the tutors so many times in order to get a clear pictures of the module and how it was assessed and then to see feedback that felt fairly unrelated to what I’d been told was actually really distressing. I guess I felt (and feel) like I would’ve done things differently if I’d known the type of feedback the work would receive. I’d worked so hard on my assessment submissions so that was just quite deflating.
I talked about it a lot with my Mum and after that, I was just exhausted. So I put on some Criminal Minds and spent most of the day working on blog posts. Or trying to, at least. Wednesdays are always my least productive days, like my brain and body borrow from Wednesday to get through Tuesday, leaving Wednesdays significantly depleted of… just everything. So I always try to avoid putting anything important on a Wednesday.
So a gentle afternoon turned into a gentle evening, watching Criminal Minds and writing for the blog in front of the fire. The cats love it when we have a fire. They all congregate in the living room and spread out in front of it, occasionally rolling over – ever so casually – to warm a different side of their bodies. It’s adorable.
I managed to go to bed at a reasonable time, watched some more Daisy Johnson videos, and was actually asleep before midnight.
I had to get up painfully early to go to the dentist (my dentist is a safety hub, which apparently means they can be open during lockdowns because they look after people with disabilities, although I didn’t know this until fairly recently), which wasn’t a pleasant experience. They have really strict safety procedures (the only reason that I feel safe going there), like an hour between each patient to sterilise the room and so on, so it takes a long time to get an appointment. Unaware of the fact that I could go to my dentist until a few months ago, it’d been a long time since I’d had a check up and so there was quite a lot to do. I’m not gonna go into detail because I don’t think anyone enjoys descriptions of dental work but it was a difficult experience, moreso than usual. I find the noises of the machines particularly difficult and in excess, they get dangerously close to triggering a meltdown, so by the time the appointment was finished, I was completely exhausted.
Back home, I finally managed to get through the Occupational Therapy paperwork and start doing the exercises for the pain in my hands and wrists. Despite the simplicity of the movements, it was hard work and every joint from my fingertips to my elbows hurt afterwards. I made a note of it to report back to the therapist – I had another appointment in a week – and took some painkillers that eventually took the edge off.
It wasn’t long before my next appointment, by phone this time with the Chronic Fatigue Service, so I lay on the sofa and watched Criminal Minds for a little bit while I recharged and gathered my thoughts for the call. I was already apprehensive about the call as it was a doctor I’d previously had a really bad experience with – one I’m tempted to go as far as saying was traumatic. It was a long time ago now but I was still anxious about the whole thing.
It turned out to be exhausting, upsetting, and a complete waste of time. He had very little of my history so most of the hour was spent taking a very extensive history, involving questions ranging from my parents health to my diet to my mental health diagnoses to my medication. And after all of that, he basically said that my case was too complicated for them, that with the more recent diagnoses – including the hypermobility diagnosis – I was better off with my current specialist. What may have previously been perceived to be Chronic Fatigue Syndrome might actually be Persistent Fatigue associated with hypermobility but it’s hard to be sure. But not only did we hang up with less clarity than when we started the call, the whole thing was just… unpleasant and awful; he claimed that I’d been diagnosed with CFS in 2007 by a doctor I don’t even remember seeing according to a letter that neither my Mum nor I remember getting; he was critical of how much Red Bull I drink (due to the sedating effect of my medication as far as I can tell) and acted like I was doing it for fun, not because it’s the only thing that keeps me awake and functioning; he talked about a set of blood tests that were never discussed with us, which was particularly alarming as one of the results could’ve indicated cancer… And on and on. It was a complete fiasco. Every time I think things can’t get worse with doctors, they do. I could’ve had cancer and no one ever even bothered to mention it. I mean… I don’t have any words.
So that was basically the day written off. I was just too distressed and too exhausted. There was an extracurricular uni session in the evening but I was just too tired. I knew I wouldn’t be able to focus and it would be recorded so I could always catch up later. Instead I spent the evening watching Criminal Minds and very, very slowly adding to some blog posts. I did get some exciting music news but unfortunately I can’t share that yet. So the day did end on a better note.
There’s no particular reason to include this picture other than the fact that I thought it was adorable: cat yoga on a piano.
I went to bed early, watched a few more Daisy Johnson videos (at the moment it feels like the only time I feel able to take the time to watch YouTube videos is right before bed or before I get up in the morning), and eventually went to sleep.
I got to sleep in a little bit and then it was up and out to the hospital for an ECG (echocardiogram). Since a small amount of people with hypermobility develop heart problems, I’ll have to have ECGs every five years or so to make sure everything’s okay. I wasn’t too worried about it but again, it was another distressing medical experience.
I’ve had an electrocardiogram before and just like that, you’re asked to undress so that the ultrasound wand can get a good image of every necessary angle of your heart. But I just couldn’t do that: the idea of being so exposed in front of people I didn’t know was and is nightmarish to me. I don’t know if that’s an ASD thing or or me thing or what. They looked at me for what felt like ages before reluctantly allowing me to keep my bra on, telling me that they likely wouldn’t get as good images. I was trying not to lose it completely so, as you can imagine, that was a super helpful comment. And then, to make matters worse, the doctor pressed the wand against my chest so hard that it physically hurt; part of me wondered whether it was a punishment for being ‘difficult.’ I couldn’t breathe properly and it hurt so much that I was almost crying, especially when she pressed it against my sternum.
When it was finally over, my Mum asked if they’d gotten what they needed and they said that they had. So much for my bra being an issue. When I was fully dressed, Mum asked me to wait outside; she was five minutes maybe and then we were out of there. She told me that she’d just done what she normally ends up needing to do with medical professionals and explain how important the language they use with autistic patients is (because, as usual, they didn’t know how to work with an autistic individual). So, for example, instead of saying they probably wouldn’t get the pictures and therefore making me feel guilty for my anxieties, they could’ve said that they could try and then, if they couldn’t get the pictures, we could all re-evaluate together, which would’ve made me feel like they were at least trying to work with me rather than dismissing my difficulties. Apparently they thanked her for sharing her experience and said that they would take it on board; whether they will, I can’t say.
The whole experience had been distressing and exhausting and I was barely holding it together. I just wanted to get home and curl up under a blanket in the safe little bubble that is my living room, curtains closed and fairy lights on. So that’s what I did. I attempted some blog writing but it was very half hearted; I was just really drained by the experience at the hospital.
Early afternoon, I had a therapy session. It was probably too much on top of the ECG experience but then I hadn’t expected that to be so dramatic and emotional. Again, I’m drawn towards the word traumatic but I guess I’m reluctant to call it that as just a person and not a mental health professional. Had it just been the one time, I wouldn’t think to call it a trauma – I’d call it distressing or deeply upsetting – but as the latest in a long line of deeply distressing experiences at the hands of medical professionals or in medical settings, it feels like it’s bigger than that, that those experiences have built up to create a big ball of trauma.
It wasn’t easy but somehow I managed to pull myself together enough for my therapy session. A lot had happened since my last session so there was a lot of catching up and processing, most especially about the medical stuff that’s been going on. It was really hard, both in the sense that it took a lot of energy to talk about it all and in that it kicked up a lot of emotions. It’s weird: it’s like I’ve been boxing it all up and hiding it under the bed for years and suddenly, the recent appointments have just kicked the lid off and I can’t get it all back in, like when you have to sit on a suitcase in order to zip it closed. So now all those emotions are just everywhere and I can’t move without tripping over one or another of them.
We finished up the session but I knew that if I stopped, I was really going to crash so I did some prep work for a cowrite I had the next day; I really don’t like going into cowrites without anything prepared, even if it’s just a list of relevant words or phrases. Since we ended up writing about something completely different, I think it’s probably fine to talk about the song we were planning to write: we’d been talking about our personal concepts of time and how time feels different since the pandemic began. So that was our concept but we needed to refine it so that it would work in song form. So I spent some time looking up interesting words in the thesaurus, searching for inspiration on quote websites, and free writing about how I’ve been feeling over the last year in relation to time. There were a few quotes that I loved and could’ve drawn inspiration from if we hadn’t jumped ship and worked on a different idea:
I thought those three quotes in particular were beautiful. I could write a song based on each one.
Late afternoon, I logged into Microsoft Teams for our group cowrite – a session to finish the song we’d started during Tuesday’s seminar. We’d already written most of the song but we kept writing and refining. We had a really good time together but we did talk about whether four people were necessarily needed for the first draft of a song. Having said that, I think everyone contributed in their own ways and the song wouldn’t be what it is without all four of us. We ended up being on the call for over two hours before deciding to call it a day. I was a bit frustrated to leave it unfinished again but I think that’s just coming from my issues with productivity; I hate leaving things incomplete. I was still staring at the Google Doc when I had a spark of inspiration and jotted down a full bridge to look at next time. I thought it worked well so I was hopeful that the others would like it too.
Less than ten minutes later, one of my parents (who doesn’t live with us but is in our support bubble) arrived. We try to have an evening a week where we just hang out together and have some real human interaction. We treated ourselves to an Indian takeaway and caught up while we waited for it and then watched a couple of episodes of Lucifer, the show we’re currently watching together. It was very chilled out and I was practically asleep on the sofa when she got up to leave.
Mum and I watched a couple of episodes of Criminal Minds before going to bed and I watched a few more Daisy Johnson YouTube videos. This is one of my favourites so far:
It’s one of several that are sort of building a sonic picture in my mind as I put this song together. Yeah, I’m trying to work out how to write my own Daisy Johnson song but I’m also realising that it’s a form of procrastination too. When I lie down at night, my thoughts start to spiral and the spiral gets tighter and tighter until I can’t think or breathe. I definitely can’t relax enough to sleep. I’ve tried all of my strategies but they don’t seem to be working so I’ve been seeing the early hours of the morning a lot more often recently.
After going to sleep so late, I slept in, hours and hours later than usual. I missed almost half of the day, which was very disconcerting. And even awake, I couldn’t summon the energy to get up for a while so I scrolled through Twitter on my phone. I’ve recently gotten into #ActuallyAutistic Twitter (I knew it existed but hadn’t spent much time looking at it) but I’m still not entirely sure how I feel about it: some of the people on there are really lovely and share valuable tips and information but I’ve also seen some pretty intense debates that make me feel quite anxious, like it wouldn’t be safe to express my opinions or experiences without someone judging me or telling me how [insert word here] I am. So it’s a mixed bag and I’m not sure whether or not engaging with it is good for my mental health, right now at least.
Eventually, at about half twelve, I dragged myself up and into the shower. The points where they’d pressed the ultrasound wand were really tender and painful. There wasn’t any bruising but they hurt to touch.
Shower done, I settled in the living room. Sooty immediately hopped up for cuddles and ended up spending most of the day tucked up against me in one position or another. It was very cute and very soothing.
With so many big posts coming up, I decided to post a short, less intense post, editing and posting another Little Things post. It’s true what I write in those posts: I do want those of you who read my blog to know who I am as a full person, not just a Picasso painting made up of the specific parts I talk about in any given blog post. That’s part of why I write these posts too.
When that was finished and posted, I did some admin stuff, mostly emails: some music stuff, plus some messages around my long term project of tracing my family history (that’s a story for another post). I also continued my attempts at redrafting the lyrics of ‘One More Time’ but I was still struggling to get it right. It was going to be super satisfying when I finally hit the right combination of words but until then, it was somewhere between a really complicated Rubik’s Cube and banging my head against a wall.
Eventually it was just getting too disheartening so I took a break. I went to Tumblr as I often do for inspiration and while I didn’t find anything to help with this song, I did find some cool art, some interesting lyric analysis, and some beautiful gifsets from several of my favourite TV shows. At the very least, it released some of the tension in my brain.
It was an evening of Criminal Minds, dinner, and my physio exercises. Oh, and a further attempt at redrafting ‘One More Time,’ but still no dice. It’ll get there at some point; I just don’t know when. My brain just feels really overloaded and overwhelmed at the moment and that makes it really hard to think when I get stressed or anxious. And it just snowballs, everything getting worse and worse until I feel like I’m so twisted up in this net of my own thoughts that I can’t move, can’t think clearly. It’s exhausting and yet, sleep is such a struggle.
I really struggled to wake up but eventually I managed to drag myself into the shower and then the living room. One of the cats, Tiger, immediately sought me out for attention and paced relentlessly until I gave in and devoted all of my attention to her. The cats are all getting far too used to us being around all of the time…
Late morning, I had a FaceTime call with a friend that went on for over an hour. That was really nice and we had a good laugh, which I really needed after the week it had been. It gave me a much appreciated boost, which was only heightened by the flurries of snow outside. That was very exciting and when I went downstairs after the call ended, I got to enjoy watching the cats in the garden, watch their befuddlement at the snow: the little shakes when it landed on them, the pouncing on the settling snowflakes… It was incredibly adorable.
Back upstairs, I did a bit more thinking and searching for inspiration – in my various songwriting notes, in my diaries, on Tumblr – for my upcoming cowrite and I worked on that until it was time for the video call, about an hour later.
I think it was a good session, especially for a first time cowrite. It was with another of my coursemates and while she and I have known each other a while now, we hadn’t managed to write together up to this point. We had a good time and laughed a lot while still managing to write most of a really promising song in about ninety minutes. So I feel like we did well. I like the song and I like the message behind it; hopefully we can finish it sometime in the near future.
So I finished the session in a really good mood, that is until I saw that Sia’s dangerous, offensive, and incredibly ableist and problematic film, Music has been nominated for two Golden Globes. I was – I am – disgusted and appalled by how little so many people – in this case, the film industry – care about the wellbeing, the opinions, and the happiness of the autistic community. It’s horrifying. It makes me want to scream at someone but there’s no one to scream at. Put me in front of the Golden Globes people and I’d rip them a new one but that’s not gonna happen, not in this reality anyway.
can someone pls with a bigger platform talk about the fact that the golden globes nominated music, sia’s horrifically ableist movie, twice?? and the implications of that for autistic people ?
— maisie (@maiisiesh) February 3, 2021
Sia's 'Music' is a possible Golden Globe winner.
The film glorifies physical harm & inspiration porn for neurotypicals & a neurotypical was cast for a non-speaking autistic role.
Sia's response to #ActuallyAutistic critique with abuse.
Spread word: #NoGoldenGlobeForMusic
— Mx. Charis Hill ♿ (they/them) (@BeingCharisBlog) February 4, 2021
— Lauren Alex Hooper (@laurenahooper) February 7, 2021
Not sorry enough to pull the movie. Not sorry enough to reject the award nomination. Not sorry enough to leave her apology up on Twitter. Not sorry enough to reach out to the people she directly insulted. Not sorry enough to tell her fans to leave #ActuallyAutistic people alone. https://t.co/8zuYKvVqGM
— Julie Atwood (@jmatwood) February 7, 2021
– because Sias movie „Music“ portrays traumatic, deadly prone restraint as the appropriate response to autistic meltdowns.
– because „Music“ erases & harms autistic people, especially non-speakers.
— autistictic (@autistictic) February 3, 2021
I did my best to have a quiet evening since I had another busy day ahead of me but I couldn’t shake off all the unpleasant feelings around Sia’s film. I tried to distract myself and work on ‘One More Time’ but I just couldn’t focus. I was too emotional, too overwhelmed. I wouldn’t have been surprised if I’d spiralled into a meltdown, if not for the fact that I was too tired to even cry.
In the end, my Mum and I watched some more Criminal Minds while she gave me a neck and shoulder massage (one of her many lives was as a massage therapist). The pain is creeping higher and higher, up my neck and into the base of my skull so although it wasn’t the most comfortable experience, I felt better for having it. Less tension, less pain. Some of the time, at least.
Again, getting to sleep wasn’t easy but it was a better night than others so I’m grateful for that. I’ll take whatever I can get right now. I’m waiting on various things that will potentially help but everything’s moving very slowly. My logical brain is very understanding, given everything with the pandemic, but my emotional brain is less rational, struggling to cope with the pain and the anxiety and the lack of sleep. As human beings, we are more than capable of holding two such opposing emotional responses but it being possible and it being easy aren’t the same thing, are they?
Somehow that ended up being a lot longer than I’d planned, than I’d expected it to be. But apparently there was a lot of stuff in my head that was intent on getting out. Life feels pretty complicated at the moment.
Category: about me, animals, anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, depression, diagnosis, emotions, meltdowns, mental health, music, quotes, sleep, therapy, treatment, university, video, writing Tagged: 2021, a week in my life, ableism, actuallyautistic, actuallyautistic twitter, agents of shield, antidepressants, anxiety, anxiety disorder, asd, assessments, autism, autism spectrum disorder, autistic, autistic adult, autistic student, birthday, blog, blog writing, cats, cfs, chronic fatigue, chronic fatigue service, chronic pain, compulsive writing, coronavirus, covid-19, cowriting, cowriting session, criminal minds, daisy johnson, demo, dentist, diary, diary writing, drowsiness, ecg, echocardiogram, emily prentiss, family, family history, family of cats, feedback, friend, golden globes, grades, grandparent, granny, hydrotherapy, hypermobility, hypermobility diagnosis, lockdown, lockdown 3.0, lucifer, massage, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medical trauma, medical treatment, medication, meltdown, music film, my cats, occupational therapy, pain, pain management referral, pandemic, pandemic 2020, part time masters student, part time student, persistent fatigue, pyramiding, quote, quotes, remote therapy, remote writing session, richard marc, richard marc music, richard sanderson, seminar, sensory overload, sia, sleep, snow, song mapping, song maps, songwriter, songwriters, songwriting, songwriting inspiration, support bubble, swimming, therapy, trauma, tumblr, twitter, university, video, videocall, week in my life
Posted on June 27, 2020
Months and months ago, I had an appointment with my psychiatrist and we reviewed the medications I was taking and how I was faring mentally. There was a lot to discuss but we spent a significant amount of time talking about how affected my life is by the sleepiness I experience, as well as the high levels of anxiety I’d been experiencing despite taking the Pregabalin. The result of this conversation was the decision to reduce and eventually stop taking the Pregabalin as it didn’t seem to be helping.
The reduction ended up being pretty uneven, without any particular structure. That was mainly due to the decision to take my time and take less as I felt able to; I didn’t make any alterations during my assessment period at university, for example, as I figured I had enough to cope with. But there were also periods when I was so preoccupied that I simply forgot that I was in the process of reducing it and only lowered the dose when I remembered. Fortunately it wasn’t as traumatic a transition as some of them have been.
150mg —> 100mg
Dropping from 150mg to 100mg, I noticed fairly quickly that my levels of anxiety were going down. At the very least, I had fewer periods of the paralysing, suffocating anxiety that short-circuit my brain, killing my ability to do anything at all. I also started to have more periods of general okay-ness. I wouldn’t quite describe my mood as good, but it definitely moving in a more positive direction than it had for a long time.
I was experiencing specific anxiety around the spread of Covid-19 but I figured that was normal for most people, especially those who already suffer from higher levels of anxiety or anxiety disorders. My as-needed prescription for Diazepam was helpful when it came to managing that, as well as taking precautionary measures.
100mg —> 50mg
I immediately suffered from side effects after this change. I had almost migraine level headaches that I could only manage by lying in bed in my darkened room. They remained at that intensity for several days before fading to a dull throbbing that painkillers took care of for the most part. I also had trouble keeping food in my system; I don’t think I need to go into any further detail on that.
I didn’t feel any different once the side effects passed but after a while, my Mum commented that I seemed less sleepy. I wasn’t convinced but kept an open mind and eventually I did think that I wasn’t feeling quite as drowsy. Part of that was down to the fact that I was drinking less Red Bull than I had been. That seemed to prove that I was needing less caffeine to function and was therefore feeling less sleepy.
50mg —> 0g
Again, I felt the side effects straight away. I had the same headaches although fewer of them and my digestive system also struggled. But with this reduction, I was also nauseous on and off for days and constantly shaky. It was very unpleasant and still hasn’t faded completely, even though I’ve been Pregabalin free for a couple of weeks. But maybe that’s been underneath the Pregabalin all along. I don’t know.
Aside from the side effects, my ability to sleep well disappeared overnight. I can’t be sure that it’s connected but it did start happening around the same time so I think it’s important to include here. I either wasn’t sleeping or having vivid nightmares that left me feeling disturbed and unsettled throughout the next day. I’ve read that this has been a common complaint during the pandemic so I’m thinking that it’s more to do with that than the Pregabalin however, it did start just as I finally stopped taking said medication. It seems unlikely that there’s no link at all.
Now, a few weeks later, I think it’s safe to assume that I’m no longer being affected by the Pregabalin or any withdrawal symptoms. Having said that I am still pretty sleepy and drinking at least one can of Red Bull a day, usually two. I still feel pretty weak and shaky, especially if I have to stand up or exert myself for more than about fifteen minutes. I’m also still sleeping badly with nightmares almost every night. It’s pretty gruelling.
I’m continuing to review the medication situation with my psychiatrist – although it is more difficult while we can’t have face to face appointments – and there are multiple options to think about. I haven’t decided what to do yet. We’re also continuing to investigate physical causes for my fatigue, although that has been put on hold by the lockdown. The restrictions are loosening but I’m not sure what that means for this situation. So, for now, all I can do is research and hope to make the right decisions when the time comes.
Category: covid-19 pandemic, medication, mental health Tagged: anti anxiety, anti anxiety medication, anxiety, anxiety disorder, caffeine, coronavirus, covid-19, disturbed sleep, drowsiness, headaches, lyrica, medication withdrawal, nausea, nightmares, pandemic, pregabalin, red bull, redbull, sleep, sleepiness, withdrawal, withdrawal symptoms
Posted on May 9, 2020
When I’m not spiralling into an anxiety-induced meltdown over the pandemic, the resulting quarantine, and (particularly) the thought of a loved one getting sick, I can look at living in lockdown in a somewhat detached, practical sense (something that has taken over a month to be able to do). Intellectually speaking, we’re living in unprecedented times, experiencing something that our parents are experiencing with us for the first time – something that very rarely occurs. There are very few people alive who have witnessed the last pandemic of this scale: the Spanish Influenza in 1918. So this is a big deal, one that will be written about in history books and studied in the future – from political, sociological, and psychological points of view to name just a few. I’ve been thinking about that a lot recently and I can’t help thinking how often history is told from the point of view of the powerful and how terribly, appallingly wrong that is, especially given the number of mistakes being made by the people in power during this period (I’m speaking from the UK but I think we’re all aware of the mistakes being made by other governments, especially that of the US). So, if we want that to change, we have to write it ourselves, write our own experiences of living in lockdown, both for the history books but also for our own sake, so that we don’t forget what this experience has been like and how our lives have been changed by it. And as true as it is that we’re all in the same position – all in lockdown with limited access to our families and friends, the world outside, and our ‘normal lives’ – each of us will be experiencing this differently so I think the more experiences written about the better. So here I am, writing about mine, both for the reasons I’ve already listed but also to keep from drowning in it all, in the anxiety and the fear and the attempt to keep going as if this isn’t a traumatic experience.
I was aware of the Coronavirus before it even moved out of China but it felt like such a horror movie scenario and caused me such anxiety that I worked really hard not to think about it too much. It seemed unlikely that it would get all the way to the UK so I focussed on the anxieties in front of me and got on with my life. Besides, surely the government would be prepared should it reach us, given how much warning they had. I didn’t vote for this government nor do I trust them but I assumed that their egocentric motivations would have them preparing the country as best they could, for themselves if not for their people.
But then the virus started to move from country to country and more and more people in the UK began to take the idea that it might reach us seriously. I battled with my anxiety around it, trying to act responsibly without thinking so hard about it that it sent me into anxiety induced meltdowns. To an extent, I felt fairly unafraid of getting the virus as a young, physically healthy person but having said that, I was very aware that I was in regular contact with immunocompromised people and I was terrified of getting it and passing it on to them. So I was careful to wash my hands, use hand sanitiser, and avoid busy areas and travel times where possible. My anxiety had already been high before the virus made the news so it was a daily battle, as it often is.
Then everything seemed to happen at once. One day I was making plans with a friend for later in the week and the next she was on a plane back to her home country because of the travel ban. I didn’t even get to say a proper goodbye (that’s my little bit of self-pity done because I know, without a doubt, that she made the right choice and I absolutely support her decision). Before that week of classes began, our course came together (electronically) and decided that we didn’t feel it was safe for us or others if we were travelling to and from uni, etc, so suddenly my weekly routine was gone, my education disrupted, and my friends were all going home, again without any of us actually getting to say goodbye to each other. I know we can all talk via social media and video calls and that this isn’t forever but depending how long this goes on, we may never come together as a course again and that is an idea I find really difficult to get my head around emotionally.
I think it was the next week that we went into official lockdown. My university pulled out all the stops to support us and within days, our classes had been moved online but prerecorded lectures and a forum aren’t the easiest ways to have discussions and a sudden lack of access to the library and facilities wasn’t an easy adjustment. I found the online classes difficult. Don’t get me wrong – I really appreciate how hard they worked to keep our education up to date and as normal as possible – but it’s not the way I learn best. It’s just a personal thing. It also made working on the assessment essay much more challenging. Fortunately, I had a tutor who was incredibly supportive and with his help (and my Mum’s), I managed to get it in with good time, despite the added stress and the impact that had.
The essay, despite the anxiety it caused me, was actually a good distraction. As soon as it was done and submitted, I really started to feel the effects of being in lockdown. After all, up until then, I was pretty much doing what I would’ve been doing anyway: spending all my time on my assignment. But with that done, it all started to sink in.
The most obvious struggle is that I miss and worry about my family. I have four parents, only one of which I’m living with, and the others are all on their own; my brother is living by himself in London; my Mum’s Mum is also living by herself, a significant distance from any of us, even if we were allowed to visit each other (I’m thinking more in the case of an emergency where we would obviously keep our distance from each other and be very careful); and I have multiple family members categorised as vulnerable. So I have a lot of people to worry about and worry about them I do. The constant anxiety is exhausting. And as grateful as I am for video calls, it’s just not the same. I miss BEING with them. I desperately miss HUGGING them. I try not to dwell on it – or stress about how much longer we’ll be separated – because that is only more damaging to my mental health but it’s hard. It’s really hard.
On a similar note, I also really miss my friends. We have video calls, regular calls, texting, social media, movie dates on platforms like Netflix Party, and so on but again, it’s not the same. It’s not the same as hanging out with them, or hugging them, or going on coffee dates, or having writing sessions. As I’ve already said, I’m trying not to think about how long it could be before I see them again. We’ll manage, thanks to the technology we have, but it will be really wonderful to see them again.
The other thing that I’m really struggling with right now is my mental health. For those of you who know me or have followed this blog for a while, you’ll know that, amongst other things, I struggle daily with anxiety and depression. These are the particular problems that have only gotten worse since the appearance of Covid-19 and the lockdown.
I’ve still been having therapy, but via Zoom instead of in person. In theory, it shouldn’t be that different but somehow it is. I’d never really considered how important it is to have a space to work through all the hard stuff and then be able to walk away from it, which you just can’t do when you’re having therapy in your living room. Plus, Zoom calls are exhausting – here’s a good article about that – which only adds to how exhausting therapy can be. Then, when it comes to the content of a session, it all feels a bit frozen: it’s hard to tackle difficult emotions when we’re in the middle of different difficult emotions. And when I’m just about coping, feeling so fragile, I don’t want to trigger something and make life even more emotionally difficult for myself than it is already. So the whole thing is really tricky and confusing. Having sessions is definitely better than not having them but it’s not straightforward. It’s not as easy as I thought it would be when we made the plan just before lockdown.
And just to add to that, I’ve been struggling with sleepiness as a side effect of my medication for months but that’s gotten a lot worse since self isolating (perhaps from the increased anxiety – I don’t know). I’m exhausted by the smallest things and I seem to need so much more sleep. And that hasn’t been helped by a sudden, intense bout of hay fever, which has bestowed upon me the additional symptoms of an itchy, blocked nose and sore, itchy eyes. It’s been so bad that even having the windows open makes it dramatically worse so going outside definitely hasn’t been an option (I can’t take antihistamines because of my other medication). So I can’t even go in the garden, making me feel all the more trapped. Inhaling steam helps but only for short periods of time. The recent rain has been a blessing, giving me several days of relief. I’m cautiously hopeful that it’s started to settle – I’ve managed a couple of trips into the garden without incident – but I don’t want to speak too soon.
And lastly, for now at least, I’m really struggling with how uncertain everything is, uncertainty having always been something that causes me anxiety. We don’t know when the lockdown will end, we don’t know when we’ll be safe again, we don’t know when we’re going to see our friends and family again. I don’t know what’s going to happen in terms of my university course. And so on and so on and so on. So on top of the ongoing fear, there’s nothing solid to hold onto. Many of my summer plans have become impossible or at least difficult, while some have been cancelled outright, which has obviously been very upsetting and left me without anything to look forward to or anchor me. I feel very lost. I’m sure that’s true for a lot of people at the moment. I try to focus on each day as it comes but it’s hard. We’re all so used to looking and planning ahead.
One more thing… I found this on Twitter the other day and wanted to share it:
Let me be clear (a thread):
Those "all over the place" feelings you've been having? They are symptoms of stress, NOT personal failures of yours.
Do you feel FLAKEY + INCONSISTENT? That's b/c your brain doesn't know what news to brace for next, or what next month will hold.
— Alexis Rockley (@alexisrockley) April 14, 2020
Feeling CREATIVELY BLOCKED? That's because your brain has temporarily diverted all its creativity (aka ability to solve novel problems) to "how do I avoid dying?" while in a narrowed, slow burn, fight-or-flight state.
— Alexis Rockley (@alexisrockley) April 14, 2020
Your plans, creativity, energy, focus + motivation are on a YO-YO right now, b/c your brain believes you need to be EXTREMELY ADAPTIVE.
You will not be on this rollercoaster forever. Be patient with your brain.
a positive psychology-certified coach + fellow human
— Alexis Rockley (@alexisrockley) April 14, 2020
I found it really helpful to have various explanations as to why I’m struggling, to know that my brain isn’t actually broken. Of course, knowing this stuff doesn’t actually fix the problems but being able to take a breath and reassure myself that there is a reason and that it won’t last forever has been helpful.
I hope you’re all safe and coping the best you can. And if you’re in the UK and they do loosen the lockdown this coming week, please continue to be careful. I hate being in lockdown but I’m absolutely terrified of what will happen if the government relax the rules, of how many more people will get sick and die. I’m scared out of my mind that someone I love will catch it. I can only speak for myself but I’m sure I’m not the only one with such fears. So please, please be careful. For all of us.
Category: covid-19 pandemic, death, medication, meltdowns, mental health, music, sleep, therapy, university Tagged: anxiety, assessment, collaboration, concentration, coronavirus, covid-19, cowriting, depression, drowsiness, emotions, essay, exhaustion, family, fatigue, focus, friends, hay fever, history, lockdown, masters degree, masters degree in songwriting, mental illness, netflix, netflix party, online classes, pandemic, planning, plans, quarantine, self isolating, sleepiness, social history, songwriting, summer, technology, travel ban, trigger, twitter, uncertainty, video calls, writers block, writing session, zoom, zoom calls
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…