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 August 29, 2020
I hadn’t intended to do another of these posts so soon but again, when I looked back at my diary at the end of the week, it felt like another very different week in my experience of lockdown. I guess I’m just trying to represent my experience of this time – and the variation within it depending on both the internal and external circumstances – as accurately as possible, for myself as much as anyone else.
The week in this post started on Monday 3rd August and ended on Sunday 9th August.
I was up by eight thirty and already at work. I planned out my week and then more specifically my day in my bullet journal before clearing my email inbox of rubbish and attending to the rest.
Next, I got to work on the ‘Back To Life‘ music video. Richard had sent me the first draft and I went through it clip by clip, making notes on what I liked, what I didn’t, any changes I wanted to make, any suggestions I had (all against their time codes). It’s not the most fun job in the world: staring at your own face for hours can get pretty draining, whether you’re a self conscious person or not, but I got it done and sent my notes back to Richard.
My main plan for the day was a writing session with Richard but I had a bit of time before our start time so I did some work on my next blog post before setting up our Zoom meeting. We’re working on multiple projects at the moment and we’d planned to work on some of my stuff that day. There was one song we’ve been working on for a couple of sessions now but while I liked the sound of the production, it just didn’t feel like it was the right mood for the song. So I made the slightly terrifying suggestion of starting over and coming at it from a different angle. That’s what we ended up doing, using different reference tracks and instrumentation. It sounded so much better by the time we called it a day.
We also spent a bit of time working on a second song, creating the basic shape of the track and deciding what sort of instrumentation fitted the mood of the song. So it was a very productive session, a very productive four hours.
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We hung up and I stretched out on the sofa, exhausted. I love writing sessions, whether they’re focussed more on the song itself or the production, but I do find them tiring and especially so when we’re working over Zoom. It’s just that bit harder to translate your ideas to the other person when the time lag complicates your communication or you can’t point to something on their screen and so on. I’m grateful that we can have our sessions at all but I do find them harder than face-to-face sessions and greatly look forward to it being safe to have those again.
I spent the afternoon and evening working on various blog posts with the TV on in the background. It was nice and gentle but I was still being productive, which definitely helps with my mental health and in turn, my ability to manage this period of time in general. Then I did some catching up with my diary before getting ready for bed.
I was just finishing up when I got a text from Richard with an MP3 attached, the song we’d spent most of our session working on. After our initial struggle with it, I was amazed by how good it sounded, how perfectly the new production fitted with the song. I went to bed, excited and proud of what we’d achieved.
Me and Mum got up early and headed for the nearby woods for a dog walk with one of our friends. She’s just recently gotten a rescue puppy (who is utterly gorgeous) and as well as seeing each other and catching up, she wanted some advice from us as (previous) dog owners. I had been really looking forward to it but I was also anxious about going out (a constant anxiety still) and then I almost had a meltdown, triggered by difficulties with managing my mask and my glasses. I don’t know if any of you fellow glasses wearers have struggled with this but my glasses rest right where the wire of the mask is and I constantly battle with keeping them both functional and at least somewhat comfortable. I’ve since bought a mask that doesn’t have a wire as my glasses keep the top in place but for this particular walk, I ended up doing a lot of it without my glasses, which (had everything been normal, wouldn’t have bothered me all that much) just added another layer of stress because I really had to focus on where I was putting my feet – I’m so short sighted that even the ground is very blurry without my glasses.
I hate sounding so negative over what was a really lovely walk – it was just an unexpectedly difficult start. It was wonderful to see this friend again and it was so nice to have some dog time, especially puppy play and cuddles. I’ve missed our dog so much since we said goodbye to him in January but I doubt any of us will be ready for another dog for a good while so this was a nice compromise. My anxieties aside, it was a very pleasant way to start the day, although I was a bit knackered afterwards. Exercise is an area that’s really suffered for me throughout lockdown so I think it was a bit of shock to the system.
We came home and I ended up having a pretty quiet day. I mainly worked on catching up with my diary – my Moby Dick – and spending time with my Mum. We’re usually pretty independent during the day and then come together in the evenings but that evening I had a movie date with a group of friends.
At seven, we started our video call and ended up spending an hour catching up and just chatting, which was really lovely. It’s been a long time since our last date for various reasons so there was a lot to catch up on and I think we’d all just missed each other’s company. Speaking for myself, I know that I’d really missed them and was just delighted to see their faces again.
Eventually we stopped rambling and got into the movie. We’ve been binging the Studio Ghibli films and this time, we watched Laputa: Castle in the Sky. I absolutely loved it. I loved the story and it was just so beautiful – I mean, they’re all beautifully animated but this one seemed particularly stunning. It’s definitely at the top of my list of Studio Ghibli films. We talked about it a bit afterwards and while we’d had differing opinions on the last film (Kiki’s Delivery Service), we all really enjoyed this one.
When we said goodbye and hung up, it was getting pretty late so I started getting ready to go to bed. I’m not sure if I’ve mentioned it already but over the last couple of months, I’ve been struggling with really bad pain in my arms, from shoulder to finger tips. That night, my right arm and shoulder were really, really hurting and even though my Mum gave me a massage, it was still really bad and made it difficult to get to sleep.
I slept really badly because my shoulder was so painful. Every time I rolled over and put my weight on it, I woke up and had to readjust my position and then get back to sleep again. It wasn’t a restful night and I really struggled to wake up. As soon as my brain was fully awake, I felt the anxiety kick in; I just felt so overwhelmed by how much I feel like I have to get done before university starts, in whatever form that takes.
The pain in my shoulder only got worse as I used my arm so my Mum worked out a schedule of painkillers to keep the pain at a minimum and keep me using it so I wouldn’t seize up or start compensating with the other shoulder. It’s been a problem for a while but since it’s only getting worse, we decided to call my GP the next morning and try to get a Zoom appointment.
I did some admin for the upcoming release of my new single, ‘Back To Life,’ and then settled in to work on my photo albums. After finally finishing the organisation of my photo library, I’d selected the photos I wanted for my physical photo albums (which were about eighteen months out of date) and sent them off to be printed. They’d arrived that morning and so I went through them, slowly getting them in chronological order. It took all afternoon and I still had to put them into the albums but it was very exciting to be so close to finishing such a mammoth job.
Early evening, I did some more admin work, replying to some emails, and listening to some songs a friend had sent me to give feedback on. I’d left it a bit late in the day to do the whole lot but I managed to do an initial listen to all of them to get the overall vibe and an in-depth listen of a couple, making detailed notes of my thoughts and suggestions. So it was a productive evening.
Then me and Mum had dinner in front of The Mentalist, which we’ve been rewatching for a couple of weeks now. I love the show but I particularly love its second life, with the FBI team rather than the CBI team. *Spoiler Alert* We’d reached the episode where Vega dies, where they attend her funeral, and Jane and Lisbon discuss the future of their relationship when they work such dangerous jobs. It’s a heartbreaking episode and even though we’ve both seen it multiple times before, we both sat there with tears streaming down our faces. What can I say, I get attached to fictional characters. Like, very attached.
It had been pretty hot all day so it took me a while to get to sleep. I don’t do well in the heat so I was dreading the predicted heatwave.
One of my cats, Lucy (or Queen Lucy as we often call her due to her being the cat we’ve had the longest and therefore the cat that rules the house), woke me up at four, yowling loudly as she played with a toy. At almost any other time of day, it would’ve been very cute but at four am, not so much. It took me ages to get back to sleep.
I got up at nine and finished listening to the songs I’d started working through the night before. I wrote down all my feedback for the remaining songs and then listened to them all again to see if any new thoughts came to me. I also included questions about various lyrics and production choices, challenging the meanings and choices so that everything would be really tight and cohesive. I was deliberately picky, as my friend had asked me to be (sorry, I’m being deliberately vague about who it is because I don’t want to announce anyone’s project before they have). As good friends, they trust my critique, rather than feeling like I’m being critical; we’ve worked together a lot so we trust each other to just want the song to be the best song possible.
That done, I spent a couple of hours catching up with my diary (I’m just so behind at the moment) and then had my therapy session at four. We spent most of the hour just catching up on the week and talking about how I’d managed the challenges and the difficulties that had come up. With the pandemic, we’re doing A LOT of distress tolerance. I do wish we could move forward and work on some of my long standing issues but from past experience, I know that when you start to unravel some of those things, you often feel worse before you feel better and I just don’t think I can handle that right now. I’m just about managing to cope day to day and I really don’t want to make things worse for myself when I’ve worked so hard to even get to this point with the pandemic going on.
I FaceTimed with one of my parents while my Mum had the Zoom appointment with the doctor. I still struggle with talking to doctors, I’m still figuring out how to do Zoom meetings with new or less than well known people, and I struggle with communication in general. So me and Mum talked about everything we wanted the doctor to know and then she did the call. She was on the computer for a long time but when she came back, she did have some good news although a large chunk of the plan does involve waiting, which I’m not super thrilled about. But my doctor has adjusted the medication plan a bit (she’ll prescribe me something stronger if it continues to get worse but for now, we’re sticking with over the counter stuff to avoid extra side effects) and referred me to occupational rheumatology where they’ll probably fit me for support braces or refer me on to physiotherapy or both. But that’s unlikely to happen for a while. So pain medication, massage, and trying to build or improve habits that at the very least don’t make the pain worse. I’m limited exercise wise by not being able to swim but we’ve set up a rough badminton court in the garden to allow for some gentle exercise, especially for my arms and shoulders.
Me and Mum had an early dinner with The Mentalist. *Spoiler Alert* We’d finally reached the final episode where Jane and Lisbon get married and it’s so lovely to see them all so happy, especially Jane, after going through so much sadness and struggle. I wasn’t convinced by their relationship at first but then I fell in love with it and watching the wedding scene usually results with me grinning like an idiot or actually crying at how sweet it is.
I was just thinking about going to bed when Richard texted me to remind me that we were announcing the release of ‘Back To Life‘ the next day, which had somehow completely slipped my mind. I swear, the pandemic has completely messed with my head – life pre-pandemic feels a bit like a dream and the way we did things feels kind of hazy. So suddenly I was in a panic about what to say when I announced the release of the song, especially one with the title ‘Back To Life’ during a pandemic (something that’s been bothering me for a long time). So I ended up spending more than an hour (at least) figuring out how to say what I wanted to say and how to say it in the best way possible.
I finally got to bed around midnight but it was so hot that, even after I discarded my duvet, it still took me a long time to get to sleep.
Lucy was gracious enough to let me sleep until five this time before waking me up, chasing a toy around my room, and then I couldn’t get back to sleep as hard as I tried. It was very frustrating.
When Mum got up, we had breakfast and rewatched *Spoiler Alert* the wedding scene in the final episode of The Mentalist, grinning like the sappy idiots we are. No regrets. It was a nice, positive way to start the day, watching characters you love get their happily ever after.
I spent the morning working on my blog post about JK Rowling’s recent transphobic comments and how complicated it is to reconcile a childhood hero with the problematic person they are in the present. I’m absolutely not condoning what she’s said or making excuses for her – if you’ve read the post, you’ll know that I refuse to support her while she makes such insensitive, harmful statements – but I also wanted to comment on some of the other connected issues. While her transphobia is without question the most important issue here, there are multiple points within the overall problem, like how her prejudices may have bled into the books and how difficult it is to make sense of these two different versions of her. I wanted to explore as many of these thoughts as possible.
It was so hot by the middle of the day that I felt like I was melting; I didn’t want any part of my body to touch any other part. It was horrible. Thank god for the fan I bought a few years back. I was reluctant because it was pretty expensive but having had several unbearably hot summers in a row, it’s been amazing; I would’ve been unable to function without it. I’ve only just been functional with it.
Early afternoon, I had a Zoom session with Richard and we mapped out a more detailed plan for releasing all the content around ‘Back To Life‘ before working on some of his music. We’ve always been a well matched pair because while his strengths are more musical, mine are more lyrical and so we’ve always been able to support each other really well. That’s one of the things that’s always felt really special about our working relationship.
Eventually I got too tired to do much good, so we scheduled another session and I had a rest, doing some blog writing with the TV on in the background.
In the evening, one of my parents – who, I guess, is in our bubble – came over and, while I don’t think you have to social distance if you’re in a bubble, we had dinner and hung out, still keeping a certain level of distance. The three of us are continuing to remain pretty isolated but it still feels sensible to stay somewhat distanced for the most part.
At seven o’clock, my alarm went off and I posted my announcement on my social media accounts…
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The fourth single from the Honest EP, written with the amazing @scottcolcombe (and produced by @laurend_d and @richardmarcmusic, who are both incredible), will be released on the 14th August! SWIPE TO SEE THE TITLE ➡️ Given the difficult and often distressing times we’re currently experiencing, I seriously considered delaying the release of new music, especially as we reach the more upbeat songs on the EP. But I didn’t want to leave the story half told. This song represents the upward turn after a painful chapter of my mental health and it feels important to include because while there are brutal lows, there are also wondrous highs. They’re all important and all part of the journey.
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That done, I felt able to be more present and enjoy the evening and although I was really tired, it was really nice to hang out with my parents. With times such as they are, I never take those moments for granted, especially since I’m not able to see all of my parents yet, together or apart. We don’t have to DO anything in particular; it’s just so nice to be together and talk face to face. It’s still so ingrained in me to greet people with a hug or squeeze their hand that I have to actively struggle against those automatic motions but it doesn’t make me want to burst into tears anymore. I’m just really looking forward to being able to do it again.
When she left, me and Mum settled down with Rizzoli and Isles, another show we haven’t watched in years, and I did some blog post writing. I absolutely agree with the philosophy that our productiveness isn’t tied to our worth as people – I wouldn’t debate that for a second – but I’ve also discovered that being productive plays a massive part in managing my mental health, even if it’s as simple as watching a movie that I’ve wanted to watch for a while but not gotten around to doing so. I guess it just depends on your definition of being productive – I don’t necessarily equate it with ‘producing’ something; it’s just doing something that I intended to do. If I intend to have a quiet and restful day and I do, then I have been productive.
I woke up far too early, which was annoying because I was still tired and sleepy but I definitely enjoyed the cool and the quiet. It’s my favourite time of day – before the world wakes up and starts rushing around, making so much noise – and we were due for another really hot day so I relished the cool air.
I had as quick a scroll through my social media as I could manage, having not been on it for a couple of days (apart from posting about ‘Back To Life‘). As I’ve said previously – during this time – it’s been better for my mental health to stay away from social media but then I do miss seeing what my friends and family are up to. So I’m trying to find a balance and for the most part, I think I’m doing okay.
That done, I settled into the living room and got to work, putting Friends on low for background noise. I posted my blog post about exam results and then spent the rest of the morning working on other blog posts.
By the middle of the day, I was really struggling to do anything because it was just so hot. I felt like I was melting and my brain seemed to be functioning very slowly, not unlike my laptop, which was definitely overheating with the fan whirring loudly. So I decided to take a break and work on something that required much less movement and brain power: slotting my newly organised photos into my albums. I also used the time to watch a film from my To Watch list – one of my New Year goals was to consume more new content rather than just familiar favourites and the lockdown has a good time to do that. It’s been good for me in other areas too. I’ve been challenging my songwriting skills and trying to write from the perspectives of different characters instead of just from my own life experiences and finding new characters and stories that inspire me has made it a really enjoyable practice.
I ended up watching Fantasy Island (mainly because I love Maggie Q), where a group of people arrive on a tropical island after winning a competition, their prize being to have their greatest fantasy fulfilled. I’d seen quite a few negative reviews of it but personally, I really enjoyed it. It wasn’t life changing but it was interesting and the twists and turns were cool. It was good entertainment and made for a mentally restful afternoon.
In the evening, me and my Mum had dinner together with a couple of episodes of Rizzoli and Isles and I spent a couple of hours working on blog posts. As usual, I put off going to bed, partly because my room was so hot. Again, thank god for my fan.
I slept long and deep, a welcome experience after months of restless sleep at best. I did have some strange dreams, but not disturbing ones. One included a storm cloud on fire, which was incredibly beautiful – much better than some of my previous dreams. I didn’t get up until almost ten but then I dived into the day, intent on being as productive as possible.
I finished my previous week-in-the-life post and then had a music lesson with one of my parents. We worked on the chords for two of the songs I’m working on and then had a long conversation about reharmonisation and how that works. I learnt about that during my BA by only briefly and that was several years ago so, with the Musical Language module coming up, I definitely needed a refresher. We might need to go over it again just to give me a quick reminder but I feel like I’m pretty solid on the basic principles. So that was good to do.
By the time we finished, it was so hot that I didn’t want to move. I lay on the sofa and watched the second series of Liar. It had been airing when we went into lockdown and it just slipped my mind; it only came back to me a month or so later and by that time, it was gone from ITV On Demand. I’d resigned myself to never knowing how it ended but then it popped up on Virgin On Demand. So I watched that through the heat of the day. It wasn’t the best show ever – I felt like there were quite a few inconsistencies and plot holes – but I was glad to see how it ended. Plus I used the time to continue adding the captions to the photos in my albums. So, considering the heat, I feel like I was pretty productive. Oh, and I also posted the first teaser for ‘Back To Life‘ on my social media.
We ended up eating dinner outside on the deck in the cool darkness and then we went inside to watch Rizzoli and Isles with some much appreciated ice cream. I kept working on the photo album captions, making it to March 2020. I was almost giddy with glee at being so close to the finish line.
That giddiness shot through the roof when I checked Instagram to see how the teaser was being received and saw that Desmond Child (writer of Bon Jovi’s ‘Livin’ on a Prayer’ and Ricky Martin’s ‘Livin’ La Vida Loca’ to name just two of his more famous songs) had liked it. I have no idea how he found it but it all but short-circuited my brain. I mean, he’s in the Songwriters Hall of Fame! So that was very, very cool.
This is the screenshot I sent to Richard…
It took me a long time to come down from that high so I didn’t get to bed until midnight. I’m really not doing well with this whole go-to-bed-early plan.
I’m always hesitant to say stuff like this – probably because of a leftover childhood superstition that I’ll jinx things – but I do feel like I’m coping better mentally, that I’ve found a way of managing things day to day. I mean, I’m still not able to read or focus on anything involving big chunks of new information for extended periods of time but generally, I feel like I’ve found a routine that’s working for me. I’m still really struggling emotionally but I don’t think that’s really going to change until it truly starts to feel safe again. The fear and anxiety is just a constant presence in my life that I try to manage, to varying degrees of success.
Category: animals, anxiety, autism, covid-19 pandemic, emotions, meltdowns, mental health, music, sleep, therapy Tagged: a week in my life, actuallyautistic, anxiety, asd, autism, autism spectrum disorder, autistic meltdown, back to life, back to life music video, blog writing, blogging, castle in the sky, cat, cat family, coronavirus, covid-19, cowriting, dbt, degree, degree in songwriting, desmond child, dialectical behaviour therapy, diary, diary writing, distress tolerance, doctor, doctors, dog, dreaming, dreams, face covering, face coverings, face mask, face masks, facemask, facemasks, facetime, family, fantasy island, fatigue, film, friends, glasses, heatwave, indie artist, indie pop, indie release, jk rowling, journaling, laputa: castle in the sky, liar, liar season 2, lockdown, lockdown 2020, massage, masters, masters degree, masters degree in songwriting, masters degree year two, meltdown, mental health, movie, music lesson, music video, musical language, netflix party, new music, new music uk, new release, new single, pain, pandemic, pandemic 2020, pandemic anxiety, pet, photo albums, photo library, pop, production, productivity, reharmonisation, remote writing session, rescue dog, richard marc, richard marc music, richard sanderson, rizzoli and isles, self isolating, self isolation, singersongwriter, singersongwriter life, sleep, social distancing, social media, songwriter, songwriters hall of fame, songwriting, songwriting degree, studio ghibli, the mentalist, therapy, transphobia, tv show, unsigned, unsigned artist, video editing, week in my life, writing session, zoom, zoom calls
Posted on August 15, 2020
It hasn’t been that long since my last week-in-my-life post but life is so different week to week at the moment that I thought I’d do another one once I started to see how the week was turning out. I thought, if anything, it would be interesting to be able to look back and see how different different periods of time could be during this pandemic and the subsequent lockdown.
The week in this post started on Monday 20th July and ended on Sunday 26th July.
I got up around eight, determined to be productive: do admin, send emails, work on blog posts, and so on. But I quickly discovered that the internet was down for the whole street and so I had to adjust my plans. I went back to my photo library and managed to finish sorting out my photo library: I can’t remember if I’ve mentioned this but when I loaded my photo library onto my new laptop, there were multiple duplicates of every single photo and the only way to be sure that I was getting rid of all of them (and not losing any of the originals) was to go through it manually. It took about two weeks of dedicated work but that morning, I finally finished deleting the duplicates, cutting the library down from 85,000 to 30,000 – no wonder Photos was running so slowly… I wasn’t quite done: I had to finish organising the remaining original photos into albums but it was real progress and that was very satisfying.
Since I was filming the music video for my next single, ‘Back To Life,’ the next day, I’d recoloured my hair a couple of days earlier (it had grown out A LOT) but since my usual dye had been discontinued, I’d had to guess at a new one and I wasn’t super happy with it so with my Mum’s help, we dyed it again, using a much redder dye than the previous one. It still wasn’t quite what I wanted but it was better than before.
I spent the afternoon working on (and finishing!) my next blog post, My Lockdown Favourites, and then, in the evening, I tried on the outfits and jewellery for the video, just to make sure that everything matched and was comfortable enough to move freely in. I avoid weighing myself because of my struggles with food – I don’t believe I have an eating disorder but I have gone through phases of disordered eating so I’m careful to avoid things that trigger that, like keeping a frequent eye on my weight – but I don’t think I’ve gained much, if any, weight during lockdown. My weight fluctuates within a certain range and I’m currently wearing the bigger size of jeans but that did happen pre-lockdown times. So I was relieved that everything was comfortable and that I don’t need to spend money on new clothes.
I was happy with the two different looks and as comfortable with our safety plan as I could be, given that I find just going out incredibly stressful, but I still felt very anxious about making the video. We were shooting early to avoid as many people as possible, would be masked (apart from me when I was on camera), and would be socially distanced, but I was still anxious about being out, about acting relaxed and happy for the upbeat song while feeling so anxious, as well as all the normal anxieties about making music videos and being filmed. So it’s safe to say I was struggling. But if we didn’t shoot the video, we couldn’t move forward with the EP, and I would continue to carry all of that anxiety.
In an attempt to relax a bit before bed, I caught up with one of my parents over FaceTime and watched an episode of The Mentalist with Mum. Then we went to bed early, given that we had to get up pretty early for the video shoot. I don’t know how I’ve managed to come up with three music videos (four shoots in total), all that have involved getting up at vaguely ridiculous hours.
My alarm was due to go off at six but I woke up at five thirty. That was positively luxurious compared to Richard’s ‘call time,’ since he’d had to leave his house before five (he was catching the first train from London – we’d talked about this a lot before we even started planning but he said he felt safe doing it, otherwise we wouldn’t have gone forward with the filming). But that extra time was good: it gave me some time to settle myself and collect my thoughts.
When my alarm went off, I got up and got showered, made up, and dressed in the first outfit I’d be wearing. I had a bit of breakfast and it was all going really well when, of course, I discovered a problem: a white residue had appeared on the frames of my glasses. It’s happened before but Mum had managed to get rid of it using a general household cleaner but nothing seemed to be working this time. We were supposed to be picking Richard up from the train station but I couldn’t do the video with my glasses looking the way they did (it was really noticeable and would look horrible) and I was rapidly spiralling into a meltdown, which I really couldn’t afford to have if we were going to film the video. In the end, Mum had to go and get Richard while I desperately tried to clean them, using anything and everything I could think of. A combination of googling and just experimenting later, I discovered that a thorough scrubbing with toothpaste was the answer. So, just in case you ever find yourself with the same problem…
PRO TIP: If your glasses develop a white residue on the frames, a good scrubbing with toothpaste will make them look as good as new.
I was just finishing when Mum and Richard got back and we headed straight out to the beach. I’d expected it to be pretty quiet, given that it was eight in the morning and a section of the beach a good distance from Brighton, but it was actually quite busy: there was an almost constant flow of people, most of whom weren’t wearing masks. This only added to my stress, in terms of safety and in terms of filming.
I don’t want to give too much away since this post will go up before the video is released. But we shot footage in three different locations (which included a somewhat awkward outfit change) and got everything we needed. I’d been worried about singing and making eye contact with the camera, something I’ve never done before, but that turned out to be much easier than before. It was hard work though, especially considering I’ve been inside for the last several months and my high level of anxiety. But we got it done and I’m cautiously optimistic about it as a finished video.
Here’s what I posted on Instagram afterwards…
After so much physical exertion (for the last year or so, even standing for extended periods of time can make me feel lightheaded and dizzy), it was a struggle to get back to the car. My whole body hurt, particularly my hip and knee joints and my steps got shorter and shorter. It felt like there was broken glass between the bones at each joint. It was horrible.
Eventually we made it back to the car and then home. We sat socially distanced in the garden for some lunch and then, as I watched Richard attempt to reconnect with the cats, I ended up falling asleep in my chair, completely exhausted by the emotion, the anxiety, and the physical activity. Fortunately Richard understands that this does happen – it’s happened before. I didn’t sleep for long and then we had a good catch up before dropping him back at the station around four. We were both really wiped from the early starts and the shoot.
Home again, I flopped down on the sofa and caught up with my other three parents who were all eager to hear how it had gone. Then me and Mum watched a couple of episodes of The Mentalist, had dinner, and went to bed early.
It was a really tough day because I was in a lot of pain after the shoot the day before. My whole body hurt, every single time I moved, every time I even shifted my weight. It was hideous. No one has managed to explain why I experience this level of pain after ‘normal’ levels of activity and our investigation has been stalled by the pandemic. Hopefully one day we’ll be able to find out, or at least find some solid ways of managing it so that I don’t feel so limited (I think the lack of exercise – swimming is the only form of exercise that I can do without pain – hasn’t helped).
I’d planned to have a very gentle day anyway, knowing I’d be tired, so I settled in to watch Absentia Season 3. I knew from watching the first two seasons that I would get so absorbed that I wouldn’t want to stop until I finished it so I dedicated the day to binging the whole thing. I’m finding this to be a really good form of escapism at the moment, especially because I don’t have the concentration to do anything but watch it. Anyway, it was really good and I really, really enjoyed it. Having only started it a month or so ago, it’s already one of my favourite shows. I think the first season is my favourite but I’ve loved all of them and I love Emily Byrne (played by Stana Katic). She’s such an interesting character with such a complex history that I could just watch endless episodes of her. It’s definitely a show that I’ll watch over and over again.
This is the trailer for Season 1 even though I was watching Season 3 – I just don’t want to spoil the show for anyone.
I was so overwhelmed when I finished it that all I could really do was sit and absorb it. But eventually my brain started working again and I had a quick scroll through social media (I haven’t been spending much time on it recently but I do try to check in every now and then so that I’m update to date with what and how my friends are doing) before doing a bit of work, despite my dedication to a day of relaxation. A Dutch journalism student had reached out to me, asking if he could interview me as a new artist dealing with the pandemic. I’d been happy to help and he’d sent me a series of questions that I’d been thinking about so I pulled them up and wrote out my answers before sending the document back to him.
I FaceTimed with one of my parents (it’s hilarious – we talk more now than we did pre-pandemic even though we’re currently doing less and therefore have less to talk about, leading to some pretty bizarre conversations) and then me and Mum had dinner with The Mentalist. And after taking some time to digest, she gave me a massage (I think I’ve mentioned previously that she used to be a massage therapist) to help with all the pain I was in. It wasn’t exactly comfortable but I think it helped in the long run.
Lying on the carpet post massage, I was so relaxed that it was very hard to get up. I didn’t end up going to bed until around eleven.
Despite the less than early night, I woke up at six and couldn’t go back to sleep. I was still tired but I enjoyed the cool and quiet of the early morning. It’s the time of day when I feel most calm, I think.
I stayed curled up in bed but I got to work, answering all of my outstanding messages (and there were A LOT of them). Over the last month or so, I’ve found that taking a couple of days away from social media can be really good for my mental health but then almost all of my socialisation with my friends is through social media so I’ve been working at finding a comfortable and healthy balance. The messages do pile up every now and then though so I’m not there yet. But I’m trying.
That done (and it felt like a real achievement considering how many messages there were), I got up and went downstairs to feed the cats. I was still in pain but it was mainly just in my joints and where the body bends, rather than absolutely everywhere like it had been the day before. So that was progress.
I spent the morning updating my bullet journal and working on various blog posts with Friends on the TV with volume turned down low (background noise helps me work and it seems to be the only thing that doesn’t distract me). I was just getting on with that when I got a handful of notifications from Taylor Swift’s social media accounts, announcing that she was releasing a new album at midnight (or 5am for me in the UK).
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Most of the things I had planned this summer didn’t end up happening, but there is something I hadn’t planned on that DID happen. And that thing is my 8th studio album, folklore. Surprise 🤗Tonight at midnight I’ll be releasing my entire brand new album of songs I’ve poured all of my whims, dreams, fears, and musings into. I wrote and recorded this music in isolation but got to collaborate with some musical heroes of mine; @aarondessner (who has co-written or produced 11 of the 16 songs), @boniver (who co-wrote and was kind enough to sing on one with me), William Bowery (who co-wrote two with me) and @jackantonoff (who is basically musical family at this point). Engineered by Laura Sisk and Jon Low, mixed by Serban Ghenea & Jon Low. The album photos were shot by the amazing @bethgarrabrant. Before this year I probably would’ve overthought when to release this music at the ‘perfect’ time, but the times we’re living in keep reminding me that nothing is guaranteed. My gut is telling me that if you make something you love, you should just put it out into the world. That’s the side of uncertainty I can get on board with. Love you guys so much ♥️
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My brain basically short-circuited. It was such a shock – a good one, yes – but a shock nonetheless. I was incredibly excited but I also had this weird mix of adrenaline and anxiety rushing through my system; I think the only way I can describe it is that it’s like when my plans suddenly get derailed and I’m left scrambling to try and figure out what the new plan is. It’s not a comfortable feeling. Having said that, I don’t want to come across as negative because I was genuinely immensely excited but sudden changes are a lot to handle when you’re autistic so I was dealing with a lot of overwhelming emotions.
Given this news, my concentration was shot for the rest of the day. Usually, we have a lot longer to wait between announcement and release so the anticipation builds over months but this time, it felt like it was all compressed into less than a day. It took hours to get back into a headspace that wasn’t just ‘OH MY GOD! OH MY GOD! TAYLOR SWIFT IS RELEASING A NEW ALBUM AND WE’LL HAVE IT IN LESS THAN TWENTY FOUR HOURS!’ and even then, the thought would leap up out of nowhere and smack me in the face, derailing my thought process. So it wasn’t the most productive day ever.
I spent (or tried to at least) the rest of the day trying to catch up with my diary so that I could immediately write down my thoughts on the new album the next day. I didn’t quite make it but I got close enough that I would still be writing about it on its release day.
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folklore will have 16 songs on the standard edition, but the physical deluxe editions will include a bonus track called “the lakes.” Because this is my 8th studio album, I made 8 deluxe CD editions and 8 deluxe vinyl editions that are available for one week😄 Each deluxe edition has unique covers, photos, and artwork. Available exclusively at taylorswift.com
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Something that I started doing with the ‘Red’ album was predicting which songs I would like based on the titles. Obviously that’s not much to go on and there’s no logic to it really but it’s a fun exercise. My guesses for ‘folklore’ were ‘the last great american dynasty,’ ‘exile’ (I mean, a collaboration with Bon Iver?!), ‘my tears ricochet,’ ‘seven,’ ‘august,’ ‘this is me trying,’ and ‘epiphany.’ So I wrote those down, set multiple alarms to wake me up for my traditional 5am first listen, and went to bed early.
My alarm went off at 4.45am and I flipped through various apps on my phone, just trying to wake myself up for the 5am release. But when the time came around, the album wasn’t available on iTunes. Fortunately lyric videos for each song had been uploaded to YouTube so I watched those according to the track listing. It’s always really important to me to listen to a new album in order because that’s a creative decision the artist made when they put it together. I often continue to listen to albums like that (unless I’m in a specific mood and need the validation that songs of a similar emotion provide).
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In isolation my imagination has run wild and this album is the result, a collection of songs and stories that flowed like a stream of consciousness. Picking up a pen was my way of escaping into fantasy, history, and memory. I’ve told these stories to the best of my ability with all the love, wonder, and whimsy they deserve. Now it’s up to you to pass them down. folklore is out now. 📷: Beth Garrabrant
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As I listened, I noted down my thoughts about each track. I love how our relationships to songs change over time and as we discover all the layers within them so I always find it really interesting to look back and see what my original thoughts were for comparison. I don’t know if anyone cares but I’m going to stick them in here because I love the album and loved it from the first listen.
I’m really looking forward to hearing ‘the lakes’ and seeing how that fits into the album and I’m just really excited to listen to the album over and over and over again, until I know every little detail. Again, because I love it so much (and because I’m a Songwriting Nerd), I’ll probably make a whole post about it at some point once I’ve listened to it more and have a better understanding of the stories. If that’s not your thing then I absolutely won’t be offended if you skip that post.
I bought some merch (the international shipping is atrocious but I’m trying not to beat myself up since I’ve barely spent any money since lockdown began) and spent the morning on Tumblr, reading people’s reactions and theories and analyses of the new songs. This is always one of my favourite parts of a new Taylor album, everyone coming together to peel back all of the layers in each of the songs. It reminds me of this Daisy Johnson quote from Agents of Shield (my favourite TV show): “Usually one person doesn’t have the solution, but a hundred people with one percent of the solution? That will get it done. I think that’s beautiful… pieces solving a puzzle.”
Early afternoon, I had a Zoom session with my therapist. We talked through the week since my last session, discussing the difficulties and how I’d dealt with them. She also let me ramble about Taylor Swift for a little bit because she knows how much I love her and how important her music is to me, both as a person and as a songwriter. For the most part though, we talked about how much I have and still am struggling with the different reactions people have had and are having to the pandemic and lockdown. I’ve never been able to get my head around the way some people have managed to be super motivated and productive during this time while I feel like I can’t move past the fact that we’re in a pandemic, that tens of thousands of people have died, hundreds of thousands of people are mourning, and so on. It’s like this giant roadblock that I just cannot navigate around. Yes, I’ve been able to do bits and pieces here and there but this is always in the middle of my brain, making it impossible to be much more than minimally functional. I don’t think a person is bad or wrong for being able to compartmentalise or manage however they are managing; I just don’t understand how someone actually does it. Usually I can understand how someone might approach a situation differently even if I can’t actually do it myself but right now, I can’t. I wish I did; I wish I knew how to not feel constantly overwhelmed by distress and grief and fear.
By the time we finished, I was really starting to flag; the early start, the emotions of ‘folklore,’ and the difficult discussions in therapy. I was TIRED; I was struggling not to fall asleep on the sofa. I lay there for a while, just processing everything, and when Mum came upstairs to check on me, we ended up watching The Mentalist together while I did some diary writing. My emotions were all over the place and I just needed some gentle time.
Dinner and another episode later, me and Mum got in the car and went for a drive. I always introduce her to new albums on long drives and it’s a tradition we both really love (something we haven’t done since before we went into lockdown). We didn’t have anywhere to drive to so we just decided to drive up to a particular junction on the motorway and back, listening to the album beginning to end. For some reason, it feels like an album that sounds best in the dark, hence why we’d waited until the evening. It was really fun and we both really enjoyed it. Mum’s initial favourites were ‘illicit affairs,’ ‘this is me trying,’ and ‘mad woman.’ After a day of listening to it, my top three were ‘this is me trying,’ ‘mirrorball,’ and ‘exile.’ But I really, really love a lot of them. It’s mostly a case of which ones do I love more or less and which ones do I connect to more or less.
There was a diversion due to roadworks so we ended up getting home pretty late. We were sorting out the cats and getting ready for bed when we came to a decision on something we’ve been discussing for a while: we decided to buy the one thing I wanted for my birthday, a Gretsch hollow body electric guitar. I’ve wanted one for months and it was going to be my birthday present but me and Mum had discussed it and decided to buy it a couple of months early so that I can make the most of it before university starts again in early October (my birthday is at the very end of September). I want to improve my skills and also just play for fun as much as possible before I have to start factoring in university work, in whatever form that takes. We’ve been talking about it for a while now but that evening, we decided to finally stop talking about it and actually do it. It was very exciting and would be arriving in just a few days (the picture below is from when it arrived).
I woke up feeling tired and unsettled and anxious and it just got stronger and stronger throughout the day. I just felt really overwhelmed by all the things I feel I still need to do before uni starts again, which ironically and frustratingly made it harder to get anything done.
It was a rainy day so the cats spent a lot of time indoors with us, which was a comfort. They’re usually busy playing in the garden so it was nice to have them around. They were all pretty affectionate but Sooty was especially snuggly and I gratefully accepted every invitation to cuddle.
I posted my weekly blog post, My Lockdown Favourites, and then spent most of the day catching up with my diary. It’s so easy to get behind and that causes me such anxiety. I also spent a bit of time at the piano and continued messing around with a couple of song ideas I’ve been working on recently. I’ve been experimenting with writing from the point of view of fictional and historical characters over lockdown and although I find it much harder than writing about my personal experiences, it’s a fun challenge and one that I think is improving my songwriting skills, as well as resulting in some interesting songs. So, all in all, it was an okay day.
In the evening, one of my parents came over for dinner in the garden. We’d also planned to watch Hamilton together but given how stressed and anxious I’d been, we decided to postpone that until next time so that I’d actually be able to enjoy it. I’ve really been looking forward to seeing it so I was grateful for the flexibility; I wanted to be able to really get stuck in and engage with it and I just didn’t feel able to that day. Still, it was really nice to see her in really life and hang out together.
When she left, me and Mum watched a couple of episodes of The Mentalist while I did some diary writing and then we went to bed, far too late as usual. Sleeping badly has got me all twisted up about going to bed so I dread it and put it off and usually end up sleeping worse because of it. It’s a habit I’m trying to break but so far I haven’t done very well. It’s just so easy to get sucked into trying to finish whatever I’m doing.
I slept restlessly (as is my new normal) and woke up feeling tired and low. But I dragged myself up and me and Mum fed the cats – it really is a two person job with five very eager cats. They’re so cute though and watching them practically inhale their food and then skip out into the garden to play is a good way to start the day.
Mum headed out straight away and drove to our gym since she hasn’t been able to get anyone on the phone. Because of my Chronic Fatigue and the ongoing problems with my joints, weight bearing exercise can be really painful so swimming is really the only serious exercise I can do. I’m really concerned that gyms are opening too early but as they are, I at least wanted to know what the safety precautions are and what my options might be. Our gym has a therapy pool that was always empty first thing in the morning so we would use that but when she returned, she reported that the therapy pool wasn’t an option because they didn’t have enough life guards yet. And when it came to their safety precautions, I just didn’t feel like it was worth the risk. But we’re going to keep talking to them and try to work out an arrangement as a disabled member. So it’s not the end of the road but it was very disappointing and didn’t help my mood.
I was supposed to have a music lesson (via Zoom) but my anxiety was even worse than the day before so, in the end, I cancelled it. Fortunately my teacher is one of my parents and so she understands that if I say I can’t do something, I really can’t. I’d really tried to motivate myself and push through my anxiety but I just felt like I was going to start crying at any moment. It was just too much.
So I curled up on the sofa with the TV on low and continued catching up with my diary. I always get behind when Taylor Swift releases an album because I end up writing so much about it – the lyrics, what I like and what I’d do differently, the production, my overall thoughts – and sticking in interesting analyses from Tumblr. I’m always amazed at how quickly some people are able to analyse a song and see all the layers while I’m still overwhelmed by the amount of layers and all the emotions the songs evoke.
I also did a bit more work organising my photo library but I hadn’t got very far before I was interrupted (very pleasantly) by one of my parents dropping in to say hello. She hadn’t planned on staying long but then we got talking about ‘folklore.’ She’s a huge music nerd so she’s always interested to know what I’m listening to. I played her a couple of the songs and that turned into a full album listening party, which was really fun, although I’m always a little anxious about playing her music that’s special to me because she can have really strong opinions. But she was really into it (she particularly liked ‘mad woman’) and asked me to share it with her so she could listen to it some more. So that was very cool.
I ended the day having dinner and watching The Mentalist with Mum (we are both complete saps when it comes to the Jane and Lisbon relationship in the final season) while I continued writing my diary.
So that’s another week of my lockdown experience. I feel like, aside from unexpected difficulties with my mental health or an autistic meltdown, I’m finding a groove where I’m as productive and comfortable as I can be. It’s far from what I would’ve wished for during this period (apart from the new Taylor Swift album) but I’m cautiously optimistic that I’m managing a bit better, in the sense that I’m better at taking things day by day.
So I hope this was interesting to read, interesting to see someone else’s experience and maybe escape your own life for a bit. I hope you’re all doing well, staying safe and coping the best you can.
Category: autism, body image, covid-19 pandemic, emotions, event, favourites, meltdowns, mental health, music, therapy, video Tagged: a week in my life, absentia, agents of shield, anxiety, back to life, behind the scenes, blog writing, blogging, cat, cats, cfs, chronic fatigue, chronic fatigue syndrome, coronavirus, covid-19, daisy johnson, dbt, diary, disordered eating, disturbed sleep, ep, face mask, facemask, facetime, family, fatigue, folklore, food, friends, glasses, gretsch, guitar, gym, hair dye, honest ep, interview, journal, laptop, lockdown, low mood, making a music video, mask, massage, me/cfs, mood, music lesson, music theory, music video, music video shoot, new guitar, new music, new single, organisation, pain, pandemic, photo albums, photo library, pool, quarantine, quote, safety, safety precautions, singer, singersongwriter, singersongwriter life, sleep, stress, swimming, taylor swift, the mentalist, tumblr, tv show, university, video shoot, wear a mask, week in my life, weight
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.