Posted on April 10, 2021
I love a good week-in-my-life post and I try to do one every semester or so, since that does tend to shake my life up. Now, the semester is coming to a close and the assessments are in sight so I’m busy with uni work, with cowrites, and with health stuff. There’s a lot to juggle right now.
The week in this post begins on Monday 15th March and ends on Sunday 21st March 2021. I’d thought I’d have this up on the blog earlier than this but when I was writing it, I wasn’t thinking about the timing and then there was Autism Awareness Week to post for. But here we are, just a bit later than planned.
I struggled to wake up with my alarm. My sleep isn’t great at the moment and my alarms really aren’t doing their job. Most of the time I’m sleeping through them completely, which isn’t exactly ideal.
For a moment, I forgot that it had been the Grammys the night before and then suddenly it came rushing back. I went online and found out who won what. I’m sad Ingrid Andress didn’t win any of the three she was nominated for, but I am glad that The Highwomen (Brandi Carlile, Natalie Hemby, Lori McKenna, and Maren Morris) won Best Country Song, although Maren Morris won’t get a Grammy since she wasn’t a writer on the song. And then there’s Taylor Swift. I’m so, so happy that she won Album of the Year for folklore. I think she deserved more than just the one award – I mean, how did she not win Best Pop Duo/Group Performance with ‘exile featuring bon iver’?! – but I do also think it’s a good thing when there’s no one person that walks away with five or six, meaning more artists/songwriters/producers/etc are being recognised for their work (I’m not saying the Grammys are fair – we know they’re problematic – but this is one aspect that makes them fairer).
I’m so happy for her, especially after everything she’s had to deal with with her masters and still working through the fall out of everything that happened/came to a head in 2016. And I know I’m biased but it’s pretty widely acknowledged what a big deal folklore was (and is); it was absolutely the album of 2020.
I was so busy catching up with the Grammys news that I was late for my online Occupational Therapy session. Fortunately my OT therapist understands my passion for music so she didn’t mind. We ran through my exercises and she wants me to do them for a little bit longer before moving on to a new set of exercises. Having fallen down the stairs at the weekend, she warned me to take things gently – to take a bit longer if that felt safer and more comfortable – and said that an injury, even to an unconnected area, could cause a general flare up of pain. So hurray for that. Everything hurt from the fall but I figured that that was due to the actual impact (well, multiple impacts) rather than anything chronic pain related. I haven’t been dealing with this – chronic pain – long enough to be able to predict stuff like flare ups. So we’ll just have to see things go.
And then we were done. The sessions are always exhausting, even if I’m not being asked to do much. So, before I could fall asleep on the sofa (it would not be the first time), I got up and recorded the new vocals for the song I was presenting in class the next day, ‘Last One Standing.’ I really love this song so I was really nervous to hear people’s feedback; I really wanted them to like it.
I finished that and, as predicted, I fell asleep on the sofa for a couple of hours.
I had a gentle rest of the day, doing various admin tasks before starting The One on Netflix. I was craving something new. I got into it really quickly, which was great – exactly what I wanted. I only stopped when 9pm rolled around and it was time for Unforgotten, a show my whole family has loved since it began airing. We all just love Nicola Walker and I particularly love her as Cassie Stuart. Having said that, I’m struggling with this series. I think the case they’re working is super interesting – maybe the most interesting one they’ve tackled – but with Cassie feeling so trapped and angry, it’s not as enjoyable as it has been in the past so I really that hope they’re heading towards a solution that brings some of her warmth back. (It’s safe to say that I wrote this before we saw the series finale.)
I was really stressing before class (we’re heading towards the assessment and I always get so anxious that I’m not doing enough) and somewhat frantically messaging with my friend. She suggested we have a a quick video chat before the class started and that really helped to ground me. Then we signed into our class.
We didn’t have our normal (awesome) tutor but we had another awesome tutor; I’ve had her as a tutor a handful of times since I first started at ICMP, on the BA, and she’s really great. Throw in the fact that we were presenting our ekphrasis songs (songs that were responses to other pieces of art, like visual art, films, etc) and it was a really interesting and thought provoking session. The brief had really stretched people and the songs were all so exciting and so different in the best possible way. I loved all of them.
I was last and VERY nervous because I was (and am) so attached to my song. Fortunately though, everyone really liked it and had some really great responses, some really interesting thoughts, and some good things to think about in the redrafting process. I was so happy with the positive response that I finished the class feeling like I was glowing. My first ‘glowy moment’ of the year – that’s what I used to call the really awesome moments. It’s been a really long time since I’ve felt like I had a reason to use the phrase.
I meant to have a nap between classes – that always makes it easier to concentrate in the second class, which is, after all, three hours long – but I accidentally ended up binge-watching The One. It’s so compelling and so thought-provoking, in so many different ways.
The seminar was on authenticity but having studied authenticity in song lyrics pretty extensively for my Musicology essay, it was all pretty familiar. So while it wasn’t too intellectually taxing, I was tired and it was hard to stay focussed. I didn’t mind three hour classes when I was actually in them but I do find three hour classes on Zoom a struggle.
When the class was over, I curled up on the sofa and finished The One; the last episode was just one mind-blowing revelation after another. It was so good. I found Rebecca a particularly fascinating character; there was so much to unravel. Both Hannah Ware (Rebecca Webb) and Zoë Tapper (Kate Saunders) deliver incredible performances and there’s so much potential for another series. Me and my friend, Luce, (who was an episode behind me) freaked out together when she finished it about an hour later.
I’m always exhausted on a Tuesday, even if I do manage a nap, and I was falling asleep on the sofa around ten. So I dragged myself up and headed for bed. That’s pretty early for me these days. I’ve been trying to get to bed earlier so that wasn’t the worst thing in the world.
I slept really badly but I didn’t sleep in. I was still in pain so I couldn’t get back to sleep anyway and at some point during the pandemic, I started feeling guilty if I slept in (this is super unhealthy, I know – I’m working on it in therapy) so I got up, had a shower and breakfast, and got to work. I did some uni stuff and then wrote down my thoughts to collect myself before a meeting with my course leader.
The meeting was about the final module of the Masters, which is called the Major Repertoire Project where we can research and create a body of work about anything we want. I know what I want to centre my project around (I’ll share soon but I want to get the current module done first) but you can take various approaches to the research and I wanted to talk to my course leader about that. We had a really in depth discussion and she gave me some really good ideas to think about. So I’ve got a lot to figure out but I’m really excited to get into it.
As good as the meeting was, I was really tired afterwards. I got comfortable and tried my best to concentrate on blog post writing. It took hours but eventually I managed to finish my blog post on being diagnosed with ADHD. At least I had a pretty good view while I worked.
Mid afternoon, I was supposed to have a phone call appointment with a neurologist. And I did, except they called two hours late, it wasn’t the person it was supposed to be, and then they basically spent twenty five minutes trying to convince my Mum and I that any tests they do as a department would probably be a waste of time and likely wouldn’t show anything. And that was it. The call ended and I just felt confused and upset. Isn’t the point of a doctor to help you, rather than convince you that trying to find an answer to your problems is a waste of everyone’s time? I mean, I was referred to the neurologist by my GP because she thought this was worth investigating. And then I finally get to see said neurologist after rescheduling and it felt like they were fobbing me off from the moment the call started. So, that was… yeah.
I was all over the place and Mum did her best to distract me. She’d seen bits of The One (although I’d managed to prevent her from seeing anything too spoiler-y) but she wanted to see the whole show so we started it again; she was hooked straight away, just like I was. As we watched, I started doing some basic research based on the Major Rep Project seeds that my course leader had planted in my brain; I didn’t get very far but it was definitely interesting and a good distraction from real life.
And then I went to bed, completely exhausted. It was barely ten thirty.
I struggled up with my early alarm but all of my careful planning for the day had fallen apart before ten am. I’d had two cowrites booked for the day but then one of them needed rearranging so I suddenly had to try and rearrange the whole day. I was majorly stressing that I was going to have to cancel on somebody but fortunately I was able to rework everything so that I could work with both people.
I had a shower and breakfast before finishing the lyrics to a song I’d been working on and speaking to Richard about the plans for the acoustic videos (the ones I’ve been releasing over the last few weeks). Then I worked on blog post stuff until it was time for my first cowrite. My friend, Anna, and I worked on a really cool song that she’d brought a draft of to the sessions and we were both so proud of it when finished. It has some really great metaphors and imagery and we tightened up this awesome outro that she’d proposed. I feel like we created something really special and that felt so good.
When we hung up, I had an hour to eat a really late lunch (and watch some more of The One with my Mum) before my second writing session, this time with my friend, Dan. He didn’t have a draft like Anna but we’d been messaging about what to write about: he’d sent me some themes, I proposed some more concrete ideas, and then he chose one that resonated for us to work on.
We decided to call it quits after a couple of hours and although we hadn’t finished the song we’d started, I feel like we’d made a really solid start on a really interesting song. I really liked what we’d come up with and Dan seemed to feel good about it too.
I feel like my writing has improved so much over the last few months and it felt particularly strong that day. I just felt like everything I was coming out with was good, not necessarily right for the song of the moment but still good. And that felt kind of amazing. Obviously not every day or every session is like that but every now and then it happens and it’s so, so satisfying; it gives you such a motivation boost. And remembering days like that one are really helpful on the days when it feels like everything you write is complete crap. So it was a good day, despite the stressful start, and I felt really positive about my writing and my friendships and my creative relationships and my course. It was a good day.
I was exhausted and starving by the time we finished but in a good way, in the way where you’ve worked really hard and you need to replenish, in the satisfying way. Mum and I finished The One with dinner and she was as blown away as I’d been. It was fun to have someone to talk about it and dissect it with; there are so many interesting and thought-provoking ideas in there.
Even though it was already late, I couldn’t help doing some more research into some of the ideas my course leader had suggested before forcibly reminding myself that that was not the time to be getting into complicated academic research, that I needed to disconnect and go to bed.
For the first time in a really long time, I slept super deeply and actually woke up feeling somewhat human and not a zombie.
After a quick shower and breakfast, my Mum and I headed down to the GP surgery for another set of blood tests. I’ve completely forgotten what they’re for or who requested them with so many people involved right now but apparently they might give us more insight into my fatigue. The nurse was lovely and the whole thing was super quick and efficient.
Back home, I did some work for uni and typed up my notes from my meeting with my course leader, including some of the resources I’d started to find the night before. I wanted to get it all down before I started to forget things. This project feels so huge right now – I’m sure it will start to feel more manageable and achievable once I’m actually working on it and not just thinking about it in broad strokes – so I don’t know what I’m going to need to remember at this point.
I worked up until my therapy session, which are still online at this point. I’ve said it before but I’ll say it again: in person is better and, personally, I find it more helpful but I’m grateful to still have access to therapy at all so I’m not complaining. Since I’ve been in a better place, we talked about that and what’s contributed to that. I told her about my first glowy moment – the first one in so long – and she was so excited so we enthused about that together. But we also talked about how difficult I’ve been finding it to start on the assessment work; maybe it’s my anxiety around assessments, maybe it’s the untreated ADHD, maybe it’s a combination of both. It’s also just irritating to have to focus on the paperwork side of things when I just want to keep writing madly.
It was an okay session. Between all of the pandemic stuff and having sessions online, I find it hard to get into things deeply enough to really move forward. So mostly it’s been about coping, which is necessary but also really frustrating. It’s felt like a year of treading water when I’m just so desperate to make some progress, of any kind.
I spent the afternoon doing various admin, like emails and so on, and more uni work. And then, early evening, I uploaded the first of the acoustic session videos. Working with Sunburst Sessions (back in February 2020), we’d made a video for each track of the Honest EP but I obviously hadn’t finished releasing the EP at that point, hence why they’re only coming out now. I’m going in order of the EP tracklist so the first one up was ‘Bad Night.’
The video up and shared to all of my social media and WhatsApp groups etc, I had a long catch up on FaceTime with one of my parents before having dinner with my Mum. It was pretty late by that point and we were both tired so we watched a couple of episodes of Episodes (it’s one of our comfort shows – it’s not emotionally heavy and both Tamsin Greig and Stephen Mangan are brilliant).
I’m still sore from falling down the stairs so Mum gave me a massage (I’m so freaking lucky to have a massage therapist for a mother) and then we both headed to bed.
I was awake on and off throughout the night and I was wide awake between four and six am. Ugh. And then, of course, I fell into a really deep sleep that was a really struggle to wake up from. And because I’d slept later than usual – later than I usually start taking my current daily painkillers – I was in so much pain that I could barely move. I had to eat and wait for them to kick in before I could manage a shower. So… not the best start to the morning.
When I finally made it to the living room, Mum and I did the Census and then I logged into the blog and posted my International Day of Happiness post.
I spent the rest of the morning working through the feedback I’d received on my songs from this semester, which made the task of choosing songs for the assessment portfolio much more straightforward: I don’t think any of the songs I’ve presented are bad but there were some obvious standouts, all of which were actually in line with my gut instinct about what to submit. I just needed to work on them, based on the feedback, and then pull the paperwork together: the various drafts, the feedback, my notes, etc.
Early afternoon I had a writing session with my friend, Phill, but we ended up deciding that we’d gotten as far as we could online and so we’re gonna continue working on the song when we can meet up in person. We’re just having trouble with the lag time. I’m happy to do that and although that was the writing session effectively over, we stayed on the video call and just had a really fun and chilled out chat, which was really nice. Because socialising has to be so organised now, I’ve definitely found myself having fewer spontaneous and casual chats with people and I’ve missed that. So it was a really nice few hours.
After we hung up, I had some chill time. I was having a quick scroll through Instagram when I saw that Natalie Hemby, a songwriter I really admire, had posted about Travis Meadows, another songwriter I really admire, and how he’s been through A LOT recently…
I love Travis Meadows and his music so I went straight to the gofundme page. The video he’d made the week before, sharing for himself what had happened, was incredibly moving. I donated what I could and shared the fundraiser on all of my socials. (The fundraiser has since met its goal but is still open – I’m sure the hospital bills, past and ongoing, are much more than the original goal set.)
One of my parents came over for a bubble dinner and we watched Lucifer together and then I watched my friend Luce‘s online show. She played some great covers and acoustic versions of the songs she’s already released but she also played some new songs and they were incredible. They were so powerful. I can’t wait for everyone to hear what she’s working on because it’s truly amazing.
When her show finished, I had a couple of FaceTime calls with various family members and then went to bed. It was still really early – not even ten thirty – but I was exhausted.
I didn’t wake up until half nine and when I opened my eyes, I found three of the five cats watching me. Clearly it was long past breakfast time and they were impatiently waiting for me to deliver. So I dragged myself up, fed the clamouring masses (this is sarcasm just in case you couldn’t tell – I adore them), and had a shower, before settling in the living room.
I ate breakfast in front of the Netflix short Creating The Queen’s Gambit. I loved it, loved seeing how the whole thing came together, from the really obvious creative choices (like Beth’s hair and the sets) to the tiniest of details (like the interactions between the characters); it just made me want to watch the show again but I just don’t have the time right now. I would want to pay attention to all of those details and right now I have too much to do; the TV is pretty much just there for background noise at the moment.
I spent the morning working on my notes for my assessment portfolio. I was due to have a cowrite in the afternoon but then that got rescheduled to the next day. But I made use of the time: I spent several hours working on a research proposal for a Musicology conference. I’d absolutely love to present at this conference, so much so that it’s probably making me super perfectionistic about it. So I’m trying – I really am – to dial that back so that I can actually write the damn proposal. Because if I don’t write the proposal, I definitely don’t get to present at the conference.
After a few hours on that, I went back to my portfolio notes. It wasn’t a particularly interesting day but it was busy. I got a lot done.
Then, in the evening, I had another bubble dinner: pizza, Lucifer, and catching up. It was really nice. I couldn’t totally relax – I did a bit more uni work and some writing for various blog posts – but I had a really good evening. And then I went to bed early, completely knackered.
So it was a super busy week. But that’s not exactly new. I’ve been battling all semester with the danger of burning myself out before the assessment. I know that I really need to manage myself better. It’s just that sometimes my enthusiasm gets the better of me, especially when it comes to music things.
As I post this, classes have ended and the assessment deadline is coming up so I really need to concentrate on that. I just wish concentrating was easier. The practical work I don’t seem to have a problem with but the analysis – an essay that’s not really an essay – has me banging my head against my desk. It’s such a simple, straightforward task and yet I’m finding it so difficult. And on that note, I’m going to post this and go and work on it. Because there’s a hundred and one more things to do after I do that.
Category: adhd, animals, anxiety, autism, covid-19 pandemic, emotions, heds, mental health, music, sleep, therapy, university, video, writing Tagged: a week in my life, acoustic sessions, adhd, assessment, attention deficit hyperactivity disorder, blog writing, blogging, blood test, cat, cats, chronic fatigue, chronic pain, conference, coronavirus, covid-19, cowriting, cowriting session, creating the queen's gambit, dbt, dialectical behaviour therapy, ekphrasis, episodes, facetime, family, family of cats, folklore, friend, friends, glowy moment, grammys 2021, heds, honest ep, honest ep (sunburst sessions), hypermobile ehlers danlos syndrome, luce, major repertoire project, march 2021, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, musicology conference, my cats, natalie hemby, neurologist, nicola walker, occupational therapy, online classes, online concert, online learning, online university, pain, pandemic, pandemic 2020, pandemic anxiety, part time masters student, perfectionism, perfectionist, remote therapy, remote writing session, research conference, research proposal, seminar, singersongwriter, sleep, songwriter, songwriting, sunburst sessions, taylor swift, the highwomen, the one, the one netflix, the queen's gambit, therapy, travis meadows, unforgotten, university, university assessment, week in my life, writing session
Posted on March 27, 2021
This post feels like it has been a long time coming but I didn’t want to post anything before I had more to say than ‘I’m in pain’ and, at long last, I do. But first, context: I started struggling with chronic pain about halfway through the first UK lockdown, early last year, and it’s been really, really tough. But recently I finally got some answers and started to get some support. And while it’s not a journey that’s over – if that’s even a possibility – I’ve come far enough that I feel like I can talk about it with a certain level of knowledge and emotional distance. So, here we go…
It started out as sporadic pain in my left hand and arm. I’ve experienced this on and off before, due to my extensive writing and my compulsive hair pulling, so I wasn’t overly concerned. Waking up to my hand being numb and tingly was unusual and a bit unnerving but given how much I was writing and how much hair I was pulling out – both of them being outlets for stress – during that first lockdown, I figured that I was just straining that arm a bit more than usual and that it would probably go back to normal as my anxiety decreased.
But then I started developing an ache in my left leg. I don’t really know how to explain it but it felt like it was coming from somewhere deeper than the centre of my leg, deeper than was physically possible. And then what started out as a painful but sporadic ache turned into attacks of debilitating pain, like electric shocks shooting through my leg at random. They were (and are when they still happen) excruciating and had me collapsing on the floor every time, sobbing or even screaming. There were a few so bad that I ended up hyperventilating so hard and long that I nearly passed out. And if that wasn’t bad enough, both the ache and random electric shock attacks spread up to my lower back. None of the common painkillers did anything and I was living in constant fear of the pain hitting me with no warning.
Eventually I was prescribed painkillers but I could only take them for a few days at a time to avoid their addictive nature. They actually – FINALLY – helped; it was such a relief. But the days in between were miserable and the painkillers I was taking in between was barely making a dent. I was also referred to Rheumatology at the hospital.
That was in May (of 2020) and I had to wait until December for an appointment. While, objectively, I can completely understand that, given how overworked hospitals are due to the pandemic, the waiting was also horrendous: I was in constant pain and desperate for help. It was hard to be patient, especially when it was affecting my education because the pain was so bad that I could barely play any of my instruments. It was a really hard time, and that was without all of the COVID-19 and other life stuff.
Eventually the appointment arrived. We didn’t learn much but it got things moving. The hypermobility diagnosis was confirmed and the possible diagnosis of Fibromyalgia was dismissed. I was referred to various departments, including Occupational Therapy, Hydrotherapy (although the consultant wasn’t sure when it would be available due to the pandemic), and, after discussing multiple different medications (many of which I’ve already taken and had negative reactions to), Pain Management. The consultant recommended I have an ECG every five years or so as heart problems can occur with connective tissue disorders and booked my first one for me, as well as an MRI, just to double check my back. She said we’d have another appointment in three months, after the ECG and MRI (it’s been more than three months at this point but I’m hopeful it will be soon since I’m still in a lot of pain).
After the wait for that appointment, I was expecting to wait for ages but we received a call about the MRI less than a week later. The woman who arranged it for us was really thorough and really aware of what might be helpful for me as an autistic individual, suggesting and putting in place so many things to reduce any of my anxiety; for example, I could have Mum in the room with me, I could play music, I could hear the sounds the MRI made before getting in it, she suggested taking Diazepam first, and so on. So that was really helpful. Surprising (I don’t think that’s ever happened before an appointment or procedure before) but very helpful.
The MRI itself was actually a really interesting experience. It was completely manageable and I actually found it quite soothing in a weird way. And, of course, my musician brain couldn’t help but wish I could sample the different sounds the MRI made to use in various tracks. It was over pretty quickly and the whole process was super efficient. I really want to see the images; I don’t know if she’ll bring it up but I’m gonna ask the consultant if I can see them at the next appointment. I’m weirdly intrigued. I mean, I’ve always been kind of fascinated by how my body works specifically (seeing my brainwaves was super cool, for example, and one day I’d love to see images of my brain) so I’m just really curious about what my spine looks like. Like every other spine, I’m sure, but I’m still curious.
(Throughout this time I had been swimming where possible – according to what felt safe and as lockdown allowed – and I’d started incorporating the basic hydrotherapy exercises that the hypermobility specialist had recommended.)
I was prescribed a new daily pain medication but I didn’t really feel like it helped (and I’m still not convinced that it’s actually doing anything helpful). The only thing that helped – and still the only thing that helps is the painkiller that I can only take for a few days at a time; it’s the only thing that has consistently given me pain free periods of time. But, as I said, I can only take it for a few days at a time and the other days are pretty awful.
Around New Year (2020-21), I noticed that the pain was spreading and by the end of January 2021, I was struggling with pain from my toes all the way up to my neck. I rarely experienced pain in my whole body all at once but it had reached a point where there was practically no area of my body that didn’t experience this specific type of pain and often for extended periods of time. My hands, arms, lower back, and lower legs were the worst.
I began Occupational Therapy in February for the pain in my hands. The therapist gave me compression gloves (I have tiny, skinny hands and so they turned out to be too big and I had to buy a smaller pair) and a series of ‘gentle’ exercises that would supposedly allow me to control the hyperextension in my fingers. Right from the start they were painful and I had to drop one of them straight away; it just hurt too much. But I worked hard at the others, whilst simultaneously trying not to work too hard and accidentally regress.
The therapist also discovered that the Pain Management referral hadn’t gone through and put a rush on it – apparently, because the pain is directly affecting my education, I should move me up the waiting list more quickly than if I wasn’t currently doing my Masters. So I guess that’s good news. Hopefully it makes up for the time lost with the referral not going through. She also had some suggestions around swimming during lockdowns, which unfortunately didn’t come to anything but it gave me hope and it was something to work on. That was better than just waiting.
In the following OT session, we talked about the pain caused by the exercises and she reduced them to every other day, which has been better, but I’m still in pretty much constant pain to some degree. But she was pleased with the progress I’d made. Unfortunately though, she thinks I’m probably in the group of people that take the longest to see real change. That’s not massively surprising to me – I’ve been in similar positions before – but it’s still frustrating. Like, out of all of this stuff, couldn’t one thing not be super hard? Couldn’t one thing have the best possible outcome? Anyway. It’s pointless to speculate about that stuff; it’s not like I can change it.
I’d been doing some research on hypermobility but as far as I can tell, it’s a symptom rather than a condition or disorder, like Joint Hypermobility Syndrome or Hypermobile Ehlers-Danlos Syndrome. And since only ‘hypermobility’ had been mentioned up to that point, I asked what my actual diagnosis was and after some conferring between the various people involved, they agrred on a Hypermobile Ehlers-Danlos Syndrome, which explains both the chronic pain and the chronic fatigue (I don’t know what this means for the Chronic Fatigue Syndrome diagnosis – at some point, we’re all going to have to sit down and work out which diagnoses are still relevant and which are now out of date), as well as multiple other problems. So there was this huge rush of relief and that lasted several days before I just felt overwhelmed. It’s an experience I’ve had before: finally knowing is amazing but then the reality of it all sinks in and it’s just a lot to process. Life is suddenly different. It’s not what you thought it was. So, yeah, it’s a lot. I’m sure you know what I’m talking about if you’ve been through a similar experience. But I’m getting there. The dust is starting to settle.
We’re still waiting on some of the other things, like the Pain Management referral and the second appointment with the Rheumatologist. And I’m continuing with the OT; I’ll be graduating to a new set of exercises soon. I’m also super excited to swim again when it becomes possible. We’ve already got several slots booked at our favourite pool. Plus, I’m due to get my first COVID vaccine soon, which will make me feel safer about swimming, even at this pool that takes the safety precautions so seriously.
So this is where we are. As I said, I didn’t want to write this post until there was a natural stopping point in the writing of it. And this seemed to be that moment: we have the beginning, the diagnosis (or diagnoses), and now we have the treatment. Obviously that’s ongoing and there are still different areas to pursue for support. So, I guess, all we can do now is see how things go and hope the pain improves.
Category: chronic fatigue syndrome, covid-19 pandemic, diagnosis, medication, mental health, treatment, trichotillomania, university Tagged: career, cfs, chronic fatigue, chronic fatigue syndrome, chronic pain, compression gloves, coronavirus, covid-19, covid-19 vaccine, diagnosis, ecg, eds, ehlers danlos syndrome, fatigue, heds, hydrotherapy, hypermobile ehlers danlos syndrome, hypermobility, lockdown, lockdown 2020, masters, masters degree, medication, mri, music, occupational therapy, pain, pain attacks, pain management, pain management referral, painkillers, pandemic, pandemic 2020, physical pain, rheumatology referral, singersongwriter, songwriting, swimming, university
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.
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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…