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 December 12, 2020
Since my last week-in-my-life post didn’t include any time ‘at’ university, I thought I’d write another one this semester, one that included uni time and all that that entails.
After three really bad mental health days, I was a bit wary about the week ahead – starting it feeling so depleted. It ended up being a very mixed week, as they’ve all been recently. Maybe it’s an end of term thing: I start off strong but then I hit a wall somewhere in the middle and it doesn’t always take much. I’ve worked hard this semester so hopefully I’ll be able to finish all of my assessment stuff fairly quickly – it’s mostly just polishing now – and get some proper holiday time. Last year, I had to work every day of the Christmas break, only taking Christmas Day off. So some time off would be really nice.
The week in this post began on Monday 30th November and ended on Sunday 6th December 2020.
I slept badly so I took my time getting up and having a shower. I had some breakfast (and ALL of my pills – there’s so many at the moment, what with my normal medication, extra supplements, and some antibiotics) and then I got myself sorted for my session with Richard.
We spent about three hours on the call, working on the production for a new song I’d written, and then just chilling out together, chatting about our uni work, the various projects we’re working on, the tv shows we’re watching, and so on… We’re always texting and we have our Zoom sessions but we haven’t hung out together in months and I really miss that.
When we finally hung up, I was exhausted and what started as an episode of The Split while I recovered turned into finishing the second series. It was really, really good – even better than the first series. Nicola Walker and Stephen Mangan were particularly fantastic. I love Nicola Walker; she was incredible in Spooks, Scott & Bailey, River, and now in Unforgotten and The Split. Her performances throughout this second series have been breathtaking and the ending had me in floods of tears. She blows me away every time.
I spent what was left of the afternoon and early evening working on my assessment essay. Then Mum and I had dinner together before starting a rewatch of Unforgotten (yes, we’re on a bit of a Nicola Walker kick at the moment), while I did some diary writing. I’m so far behind, what with everything I’ve been dealing with healthwise and doing for uni. My anxiety over it is so high but so is my anxiety over my uni work so the two are constantly pushing against one another. I never have any respite from it and it’s exhausting.
I managed to go to bed reasonably early, which was an achievement, especially since I had to get up early the next morning for uni.
Again, I slept restlessly but with disturbing dreams that I couldn’t quite remember when I woke up; it just left me feeling kind of uneasy for most of the day, which wasn’t fun. I swear, I’ve had as many nightmares or disturbing dreams since the pandemic began than in my whole life up to that point. It’s horrible; I really feel for anyone who deals with this generally, independent of the pandemic.
I got up, got showered and dressed, had breakfast and pills before logging into my first class of the day. I could only stay an hour of the two (pre-arranged with my tutor) but we spent that hour identifying and discussing different kinds of hooks and how they’re used in songs. Then I had to sign off for a call about my rheumatology referral. It seriously cannot come quickly enough; the pain in my arm, hand, back and legs is only getting worse as time passes.
Before I got down to work, I checked my Spotify stats and saw that the Honest EP has surpassed 30,000 streams. It’s a weird feeling, knowing that so many people have heard these songs. A good feeling, but a weird feeling. I can’t really describe it.
I spent several hours working on my essay, all but finishing the first draft. So that was a good bit of work done – more than I can usually manage between classes. I had some lunch, some time to dedicate to my diary writing, and then I was signing back into class.
The afternoon’s workshop was a productive one. We got through a lot of songs and we had some really good discussions, despite only having an hour. Everyone was really lovely about my song, which meant a lot since it was such a personal one. I also had questions about the grading criteria and learning outcomes because I find the language very unclear and that lead to a good conversation about the assessment as well as inclusivity and accessibility of the course. So it felt like a really positive class, in all sorts of ways.
When my class finished, my Mum and I FaceTimed with my Granny for her birthday and I also got to see my aunt (they’re in a bubble together), which was really lovely. I don’t think I’ve seen either of them in person since Christmas, which has been hard, even knowing that it’s the right, responsible thing to do. It a weird world – a difficult world – when the best way to love someone is to stay away from them.
I also FaceTimed with one of my parents who’d had a particularly rough day. So it was a very social day! It was good to do but I definitely felt drained afterwards.
I was having some downtime, doing some blog writing and watching TV, when another of my other parents called me and told me to change channel to a very cute programme about puppies. It was indeed very cute and it did make me wish for a puppy again, not that we intend to get one in the foreseeable future – we don’t have enough time to properly devote to one so it wouldn’t be fair. But I’m always up for any puppy time I can get.
But the best bit was how one of my cats, Mouse, reacted to it. She was fascinated by the puppies, even patting the screen, trying to touch them. It was utterly adorable. She sat patiently through the advert break and was just as absorbed by the puppies when they returned to the screen. She watched intently for the rest of the programme and then, when the credits rolled, she got up and walked away. It was the funniest thing.
So that was very adorable.
Mum and I had dinner with another few episodes of Unforgotten and I finished my essay. Well, the first draft anyway. It needed a read through and a tidy up before I sent it off but what I’d wanted done for my tutorial session was essentially done. A productive day’s work and in bed before eleven: not bad at all.
So Lockdown 2.0 has ended, not that it felt like much of a lockdown. If you’re going to call it a lockdown, then you have to do what you did in the first lockdown and shut everything down. Otherwise it’s not going to make a difference, people are going to have even less faith in it as a safety measure, and they’ll flaunt the rules because they don’t think it matters. It’s been driving me up the wall. I’m so frustrated: with the government, with the people ignoring the rules (and boasting about it), anyone who is putting casual convenience over the safety of others… Yes, that’s a generalised statement. I’m aware that there are important and necessary reasons to go out but there just seem to be so many people who just don’t care that we’re still in a pandemic and I find that incredibly distressing.
I woke up at eight and intended to get up but then suddenly it was quarter past nine so I must’ve accidentally gone back to sleep. I did manage to get up then and headed straight for my desk to record the vocals for the song I’d been working on with Richard. Even though I love it, for some reason, I find it really hard to motivate myself to start recording so it seems that the easiest way is to just get up and do it before I can get into a procrastinating mindset.
That done, I had breakfast and a shower, leaving me with just enough time to tidy up my essay and send it to my tutor before heading out to have a blood test. I had one a month or so ago and it showed dangerously low Vitamin D levels so I’ve been on a high dose Vitamin D supplement to try and build them up again. This blood test should tell us whether they’ve helped and what the next steps are.
It was almost dark by the time we got home so we settled down in the living room, lit a fire (one of my favourite things about this time of year and about this house – the fireplace) and continued watching Unforgotten. I also kept working on my Lockdown 2.0 blog post. I’d been keeping the list updated throughout the lockdown so it was just a case of tidying it up, adding all the right links, and writing an introduction and conclusion.
I had to stop in the middle to sign in to my tutorial. I had a really good session with my tutor. He was complimentary about what I’d already done and had some really good feedback so I feel pretty good about my next steps. I know what I need to do and now I just need to do it. Then I get one more tutorial before the holidays for any final feedback or guidance. The deadline is in sight, which is more than a bit scary. I just really, really want to do well.
I was exhausted afterwards but I still managed to finish and post the Lockdown 2.0 blog. So I guess it was a pretty productive day.
That done, I had a quick scroll through social media and saw that people had started to post their Spotify stats of the year, both as listeners and as artists. I always find this difficult, regardless of any rational talking to I give myself, regardless of whatever I’ve personally gone through or achieved that year; it just taps into my lifelong insecurity of not doing well enough, not being ‘good enough.’ So it’s not easy. This year should’ve been different, with four of the five tracks from my EP being released since January, but Spotify doesn’t count anything after 31st October and with ‘Honest‘ coming out on 30th October, only one day of its streams were counted. So my most successful song wasn’t a part of my Spotify Wrapped, making it completely inaccurate. So I haven’t shared it – haven’t wanted to – and I feel a little bit robbed of that. I have included the percentage increases here but in reality, they’re a good bit higher since ‘Honest’ did so well.
Hopefully next year, or whenever it is that I release more music, the figures will be more accurate and I’ll feel confident in sharing them. This ‘comparison anxiety,’ as my friend called it, was something I really wanted to work on in therapy this year but even when I’ve felt able to ‘go’ to therapy, it’s been difficult to get much further than damage control around the pandemic. That’s been really difficult – a real frustration – this year. I’ve just felt completely stuck at therapy: while I want to move forward, I’ve only felt able to maintain the fragile balancing act I’ve managed to create. And I haven’t even been able to do that a lot of the time.
Early evening, my Mum and I FaceTimed with my Granny before having fish and chips with one of my other parents. We watched the new episode of His Dark Materials (Series 2 Episode 4) and it was so good. Oh my god, that cliffhanger!
I was just getting ready for bed when I felt the pain in my back. It had been aching all afternoon but that’s not unusual right now but then it started to get worse, sharper and higher. It came on so suddenly that I couldn’t get from the bathroom to the bedroom without Mum’s help and then, when I collapsed on the bed, I couldn’t move because the pain was so bad. It seems to come in waves: there’s the pain and then it surges like a series of electric shocks before finally (FINALLY) receding back to the original pain level. And I never know how long it will go on for; sometimes painkillers seem to make a difference and sometimes it seems to go on for ages regardless. I’m not entirely sure how long this one went on for but it was at least half an hour. And then it always takes quite a long time for me to get my body to relax afterwards, my muscles having been so tense while the electric shock pain was so bad. So even though I was exhausted, it took me a long time to get comfortable and drift off.
It took me a long time to get up because I was so stiff and sore. The rheumatology appointment can’t come soon enough. I struggled through breakfast and a shower and then had a Zoom production session with Richard, continuing to work on the song we’d started on the Monday. Considering how out of our normal styles the song was, I think we did a good job, especially for a demo and I’m definitely interested to hear what my class have to say when they hear it.
We also had some chill time, just chatting and hanging out, almost like we would if we were actually together, which was really nice. We’re coping with remote sessions but I cannot wait to hang out again properly, have face-to-face writing sessions, and actually do things together. Or not do things together but do that together in the same room, if you know what I mean.
When we finished, I did a couple of FaceTime calls with family and then collapsed on the sofa. I was completely exhausted. Me and Mum watched the last episode of Unforgotten Series 3 and oh my god, it gets me every time (if you know, you know – I’m not going to spoil it but the acting is incredible). Nicola Walker does not get the credit she deserves, although from what I’ve read in interviews, she seems to be pretty happy just buckling down on great projects and not doing the whole spotlight thing. (I’m so annoyed with myself that I missed seeing her in The Curious Incident of the Dog in the Night-Time – I would love to see her on stage and it’s such a great book.)
Mum and I were having a relatively chilled evening until I asked her about her call with my doctor. There had been multiple things to update her on and ask about but some of the advice she’d given was just really triggering and upsetting. I will talk about it at some point because I think it’s an important thing to have conversations about but it’s not something I’m personally ready to talk about yet. But it really upset me and just killed the warm, cozy mood of the evening.
And then, to make matters worse, Mouse (the cat) brought in a dead mouse, which is something that almost always sets off a meltdown (fortunately Mum understands this and is okay with dealing with it while I do my best to avoid said meltdown). I managed to remove myself quickly enough that I didn’t have one but it was just the final straw on what I could handle that evening so even though it was still quite early, I went to bed. It was all just too much.
I slept for about twelve hours but I still woke up feeling exhausted, depressed, and miserable. I feel like I spent most of the first lockdown working really hard to get my mental health into some sort of box so I felt like I wasn’t constantly overwhelmed but most days, it still feels like I’m walking on a tightrope and it takes so little to knock me off and back into that suffocating depression. And that’s exactly what the night before did.
I really struggled all day. I just felt completely unmotivated and so, so tired. I was also having to deal with side effects of my antibiotics – they left me with a disgusting taste in my mouth all the time – which was just an extra strain. I only had one day left so I tried to focus on that but it just felt so much harder than it would’ve had I not already been feeling so awful. I did manage to finish and post the blog post about What’s Next for the Honest EP so that was good to do and helpful for my mental state – ticking stuff off my list always gives me at least a bit of a boost.
The good news of the day was that Kalie Shorr had re-released (I guess) her debut album, Open Book (which I wrote about here), but as Open Book: Unabridged, the original album plus four more songs. ‘My Voice’ and ‘Lying To Myself’ had already been released as singles and she’d played ‘Eighteen’ during her livestream concert but ‘Out Of It’ was completely new, which was really cool. They’re all stunning songs and all in their own way. ‘My Voice’ is empowering and unapologetic, as well as a very effective middle finger at the Country labels in Nashville. ‘Lying To Myself’ paints an aching authentic picture of insecurity after a break up with incredible lyrics like, “I picked out all my favourite things you said, then like a delusional architect, I built you up like a house of cards” and “You liked it up on that pedestal ’cause damn, you looked incredible, but coming down’s inevitable.” ‘Eighteen’ is a brutally honest, heartbreaking song about looking back at a relationship that really wasn’t okay, where you were all in but you were only ever treated badly. And ‘Out Of It’ is similar to a previous Kalie song, ‘Awake,’ but this time, she’s saying ‘no’ and isn’t going to get pulled into the bullshit; this time, she’s cutting the cord between herself and the other person. And because I’m a lyric nerd, here is my favourite (or one of my favourites) from each song:
My Voice: “Too rock for country, too country for punk / But who said I had to pick either one / Tattoos at the Opry / I could cover em up but it’s not me”
Lying To Myself: “I’m a little out of touch with reality, it’s never been that nice to me / I like the pictures I paint the best”
Eighteen: “I see you out with younger versions of me / While I’m trying to find who I used to be / I’m terrified that you and I will always be chasing eighteen”
Out Of It: “Your mom and dad put you through hell / You tell your secrets ’til you scare yourself / It’s a big dramatic entrance then you leave / And now I’m the girl I said I’d never be”
Late afternoon saw me dragging myself through some preparation for a mental health assessment that I have coming up, which was another thing I needed to do. But I was so tired that it took forever and I spent a lot of the time it took with my head on my arms, just trying to think. It was just a really bad mental health day. There was no way around it so I just tried to get through it. I was too tired to do anything really but I still tried to write my blog post about the UniversitiesUK Conference. I find it so hard to just do nothing; it causes me a lot of anxiety so even when I’m exhausted, I’m still desperately trying to do something.
By necessity, it was a quiet evening and I went to bed early, all too aware of how soon I had to wake up again to watch Maren Morris’ livestream concert.
After MANY alarms, I struggled up at 2am to watch Maren Morris’ livestream concert. It felt very strange to not be a part of the crowd, singing (or screaming) along with her but it was so good to see her perform and hear her gorgeous voice again. It was very comforting, like a reminder that some things don’t change. The world might’ve turned upside down but Maren Morris is still Maren Morris, an exceptional songwriter, singer, and performer. So I was really grateful that she and her team put together this show for us.
I didn’t get back to sleep until about five and couldn’t be roused for anything. I eventually woke up at twelve and then I felt so tired and heavy that I could barely get out of bed. I spent several hours unable to do anything but lie on the sofa and watch TV. Disrupting my sleep patterns always throws me for six and with the depressive feelings still very overwhelming, I was really struggling.
Eventually I managed a shower, which completely exhausted me. It also makes me feel sick and dizzy to stand up for the amount of time it takes to sort the shower, have the shower, and then get dried and dressed. One more thing on the list of things being investigated.
Back in the living room, I put on Lucifer and attempted to do something productive. Mostly I ended up jumping between this and my diary, writing a few sentences here and there before switching back, just too tired to think enough to write anything decent. So that was frustrating, plus I had the nerve pain in my leg again – not the electric shock version but the bit that always comes before that (even if it doesn’t turn into said electric shock feeling) where it aches deeper than feels physically possible. So that didn’t help.
Mum and I had an early dinner and then she went for a swim. I really wanted to go and felt like I should – I’d been looking forward to it ever since the pool closed for lockdown – but I just had absolutely no energy. So she went and hopefully I’ll feel able to go next time. I got some good writing done though, so at least the time didn’t go to waste.
Having gotten up so late, I ended up going to bed too late, which was a bit of a pain. My sleep schedule is so easily knocked off course and then so difficult to correct. It was worth it though. Seeing Maren Morris perform is always good for my soul.
I slept restlessly and struggled up around ten. I still felt incredibly depressed and it took a huge amount of effort to just get out of bed, into the shower, and up into the living room. I had a quiet day, not that that I think I could’ve managed anything else. I managed to finish and post my blog post about speaking at the UniversitiesUK Conference. I also finished all the paperwork for the upcoming mental health assessment and worked on the interview questions my university had sent me about doing the conference (that interview has since been posted). So, considering how awful I felt, I did manage to get something out of the way and check some things off the ongoing list, which – as I think I’ve said – at least helps me to keep my mental state from sinking lower. Having said that, I don’t want to promote the idea that being constantly productive is essential for your mental health; I’ve just found that, if I can tick something off of my to do list, even if it’s something tiny, then that can help me to keep moving forward, help me not to get stuck in my depression. It doesn’t always work; sometimes I just have to surrender to a bad day and hope that the next one will be better. But trying , even if not succeeding, does seem to do something positive.
In the evening, one of my parents came over and the three of us had a chilled evening, eating dinner in front of the fire and continuing our rewatch of Lucifer. It was gentle and undemanding and I did feel better for it. I often simplify my mood into two levels: surface and deep. And in this case, even though my deep mood was still very depressed and twisted up, my surface mood was a bit lighter. Calling it a surface mood doesn’t, to me at least, make it any less important than the deeper mood; it just means that it’s the mood that deals with the day to day stuff while the deeper mood is the one that you carry inside you and the one that sits with all the big, important stuff in your head and in your life. I guess, I see this mood as the one that’s so intricately intertwined with a person’s overall mental health. For example, in the previous few days, I was depressed on both levels (I’m not sure how good a job I’ve done of illustrating that but it’s the truth) but after the Sunday evening, my surface mood started to lift out of that depressed place. My deeper mood was still there though (and still is as I post this). But the lightening of my surface mood did make it a bit easier to face Monday and the coming week.
I tried to go to bed early but as usual, failed. I swear, I’m desperate to sleep all day and then, at about seven o’clock in the evening, my brain snaps on and starts firing wildly, almost too fast for me to keep up with my own thoughts. It’s so frustrating. It’s almost as if my brain has got day and night confused.
So there you have it: another week completely different from the last. I think I’m grateful for that – it must be better than feeling like you’re stuck in a hamster wheel surely – but it’s not without it’s difficulties. When planning is the thing that makes life easier to bear, it can be hard when each new week seems to bring something unexpected.
You guys seem to like these posts so I’ll be sure to do another one soon but probably not until the new year. Touch wood, I can get all of my coursework done in the next ten days and then I can have some time off (although I’m not exactly sure whether it will feel like time off – my brain already has an anxiety fuelled to-do list waiting for me – but I’m going to try my best.) Anyway, I hope you enjoyed reading this and I hope to see you in the next post.
Category: animals, anxiety, body image, chronic fatigue syndrome, covid-19 pandemic, depression, emotions, favourites, holidays, medication, mental health, music, ocd, sleep, therapy, treatment, university, writing Tagged: a week in my life, anxiety, asd, assessment, autism, autistic, autistic adult, autistic spectrum disorder, autistic student, blog writing, cat, cfs, christmas, christmas holiday, chronic fatigue, chronic fatigue syndrome, chronic pain, comparing, comparing myself, comparison anxiety, compulsive writing, concert, coproducer, coproducing, coronavirus, coursework, covid-19, depressed, depression, diary writing, doctor, emotions, essay, essay writing, facetime, family, family of cats, fatigue, favourite lyrics, feedback, his dark materials, holidays, home recording, honest, honest ep, insecurity, interview, kalie shorr, livestream, lockdown, lockdown 2.0, lockdown 2020, logic pro x, lucifer, lyrics, maren morris, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medical advice, medication, mental health, mental illness, mood, my cat, nerve pain, nicola walker, obsessive compulsive disorder, ocd, online concert, open book, open book: unabridged, pain, pandemic, pandemic 2020, part time masters student, part time student, production, productivity, recording, remote writing session, richard marc, richard marc music, sleep, songwriting, spotify, spotify streams, spotify wrapped, the split, triggered, unforgotten, university, vitamin d, vitamin deficiency, week in my life, writing, writing partners, zoom, zoom calls, zoom writing
Posted on November 21, 2020
As I’ve mentioned before, I’ve struggled with extreme fatigue all my life (I talked about this in my ‘Tired‘ blog post); Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (often referred to collectively as ME/CFS) have been tossed around since I was twelve years old but I wasn’t officially diagnosed until last year. This kind of acute ‘unexplained’ fatigue – unexplained as in there is no obvious cause, such as exercise or lack of sleep – is also a common experience for autistic individuals, as well as related symptoms like headaches and bodily pain.
I’ve been managing these high levels of fatigue for most of my life, trying various things to improve my quality of life. And I continued searching for a cause. I had test after test but nothing ever gave us an explanation. I resisted the ME/CFS diagnosis even as it seemed more and more likely because there’s no cure, not even a reliable method of management, but eventually it seemed the only way to move forward. So, after a long talk with my GP, she officially diagnosed me with Chronic Fatigue Syndrome and we began discussing various options for next steps and support. She referred me to the local Chronic Fatigue Clinic and I anxiously awaited my session.
It was a bitter, heart-wrenching disappointment. I left in tears. Maybe it would’ve been helpful when I first started experiencing these symptoms (I think the longest any of the others there had been struggling was two years) but twelve years in, I knew more than the person delivering the information, had found everything suggested to make no difference or be outright unhelpful, and I just felt so patronised. It was an awful experience and I couldn’t help but feel so angry that this was the best on offer for what I was trying to manage and had been trying to manage alone (in terms of the health system) for more than a decade.
When we spoke to them after said awful session, they referred me to a doctor that we realised I’d previously seen – years and years ago and had a very traumatic experience with. I was obviously very reluctant to go. My Mum and I spent a lot of time talking about it, about the pros and cons of going and not going. The scary thing is that it’s so easy to get kicked off every list with one refusal so I said that I would go, despite having had such a distressing appointment with him – one I’m sure he doesn’t even remember. But before we contacted that clinic, we spoke to my GP again. We explained how upsetting the experience had been and how worried we were that it was only going to be worse this time, considering I would be going in with the baggage of the previous appointment; we told her that I would go if that was how it had to be to continue on this path but she felt that we were right, that it wouldn’t be helpful given the circumstances and as I’d technically already seen him, it wouldn’t cause any problems in the system. We asked if there were any other options and this was when she referred me for the hypermobility assessment (these posts are now out of order, not only because it’s been such a confusing and complicated process, but also because I’ve had trouble keeping things like this clear and ordered in my head since the pandemic started).
I’ve now had this appointment and been diagnosed with hypermobility, which potentially explains (at least in part) my problems with fatigue and pain. (At some point, we’re going to need to lay out all of these diagnoses and work out whether there’s any overlap, whether any of them are now redundant. But that’s a job for another day.) Apparently those with hypermobility are seven times more likely to be autistic, which is a very interesting piece to add to the whole puzzle. The post goes into it in more detail but basically, we’re now waiting to find out whether or not various routes are possible. For example, I’ve been referred for hydrotherapy but we don’t know whether I’ll get it and if I do, when it will be possible with the pandemic and lockdown. That has really stalled things. So it’s one waiting game after another.
But we’re not simply waiting. We – my Mum in particular – are also looking into other angles, other medical professionals who specialise in fatigue or who have studied fatigue in depth. We’ll take any advice we can get. I resisted a diagnosis of CFS for so long because it felt like admitting defeat – an expectation that I would just have to live with it with limited options – but I don’t accept that, not anymore. I’m participating in every research study I can find that I qualify for and my family and I continue to research potential specialists and potential avenues of treatment or even simply more effective management of the symptoms. The pandemic makes it hard but I am not willing to accept that this is going to be my life, that there’s no hope. Not that long ago, NICE (The National Institute for Health and Care Excellence) removed ‘graded exercise therapy’ as a treatment for ME/CFS, after both research and those suffering with the condition proved that it was actually unhelpful at the very least. It’s slow but it’s progress. And I’ll take all the progress I can get.
Category: autism, chronic fatigue syndrome, covid-19 pandemic, diagnosis, sleep, treatment Tagged: asd, autism, autism spectrum disorder, autist, autistic adult, cfs research, change, chronic fatigue, chronic fatigue clinic, chronic fatigue syndrome, chronic pain, diagnoses, diagnosis, doctor, fatigue, gp, graded exercise therapy, hydrotherapy, hydrotherapy referral, hypermobile, hypermobility, hypermobility diagnosis, lockdown, lockdown 2020, me/cfs, multiple diagnoses, myalgic encephalomyelitis, NICE, pandemic, pandemic 2020, progress, referral, research, research study, research volunteer, tired, treatment
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…