What I Did In Lockdown – Part 3

So, on the 4th January, England went into another national lockdown and this list was once again revived. This one felt much more like the first lockdown than the second, where many schools, businesses, etc were still open. When schools and universities started to open, my course remained online (it was one of the courses that could function solely online and meant less people going back to the uni) so lockdown continued for me. My life has only just started to involve going out again – swimming, getting a haircut, (safely) seeing a few people – and that’s why I’ve kept this list going as long as I have…


  • Uploaded all of my assessment work for the Musical Language module.
  • Suggested a topic for Kalie Shorr’s podcast, which she used, and then mentioned me and my music during it, which meant a lot to me.
  • Followed the news about the riots at the Capitol building in Washington D.C.
  • Started building my family tree on AncestryDNA and learning about who my relatives are, especially on my father’s side. This included messaging with distant relatives (cousins multiple times removed, for example), which was a pretty surreal experience.
  • Listened to and fell in love with the bonus tracks from Taylor Swift’s evermore.
  • Started a new (very beautiful) subscription of Vitamin D supplement.
  • Had a socially distanced chat and exchange of Christmas presents with one of my best friends.
  • Had a bit of a reset therapy session: we caught up and then set some goals to work on.
  • Had multiple writing sessions with Richard.
  • Wrote and posted a blog post about the third semester of my Masters.
  • Tested out a new method of overcoming my Trichotillomania: using a strip of elastic to tie my hand to my portable desk, preventing my pulling hand from reaching my hair.
  • Finished my ADHD assessment and was diagnosed with ADHD, although it’s a complicated one as there is much overlap between Autism and ADHD.
  • Had a Netflix party with some friends where we watched How To Train Your Dragon.
  • Started my new university module, The Writer’s Voice (online, of course).
  • Binge-watched The Wilds.
  • Had a productive meeting with one of the careers team at my university.
  • Had multiple writing sessions with my friend and coursemate, Luce.
  • Watched and critiqued the first draft of the acoustic session videos.
  • Watched the film, How It Ends.
  • Watched the film, Ava.
  • Due to technical issues, my friend, Aislin, and I wrote a song using basically texts and a google doc; and not only that, it was a song we loved and felt really proud of, regardless of the circumstances.
  • Watched Joe Biden’s inauguration; I found it very inspiring and emotional.
  • Had a consultation with an Occupational Therapist (via phone) for the pain in my hands.
  • Continued with my therapy sessions.
  • Worked on a couple of songs with my friend and coursemate, Dan.
  • Got my AncestryDNA results back, which was really interesting in some ways and frustrating in others.
  • Had a long catch up call with one of my best friends.
  • Had my first session for a new mentoring programme.
  • Had a meltdown after an unexpected change with a university class and ended up missing the class entirely.
  • Watched the series, Tiny Pretty Things.
  • Had a COVID test.
  • Had my COVID test come back negative.
  • Had multiple sessions with my friend and coursemate, Anna.
  • Watched one of my best friends, Luce, do her second online show.
  • Finished the acoustic session videos.
  • Began Occupational Therapy for the pain in my hands.
  • Wrote a blog post about the first year without our dog, Lucky.
  • Wrote multiple songs by myself.
  • Started FAWM – February Album Writing Month, a challenge to write fourteen songs in twenty eight days.
  • Had a phone call with the Chronic Fatigue Service that proved to be not only unhelpful, but deeply troubling: we discovered that I’d never received the results of blood-work from two years ago that showed multiple (potentially dangerous) abnormalities that should’ve been investigated and he told me my case was too complicated for them, that they didn’t feel they could help me.
  • Ran into a friend that I haven’t seen for ages and we planned a call and (online) movie night.
  • Had an ECG: hypermobility can result in heart problems (in a small percentage of people) so I’ll have to have regular heart check ups.
  • Had a writing session with my friend and coursemate, Amy.
  • Continued to spread awareness of how ableist, offensive, and dangerous Sia’s film, Music, is.
  • Posted my blog post about the first year with our lovely dog, Lucky.
  • Watched the film, Peppermint.
  • Celebrated the beginning of Taylor Swift releasing her rerecorded albums, starting with ‘Love Story (Taylor’s Version).’
  • Wrote with my friend and coursemate, Harrison.
  • Watched the film, The Dig.
  • Had a long overdue movie night (in the middle of the day) and catch up with two of my best friends.
  • Posted two blog posts on the same day about Trichotillomania. (x) (x)
  • My Mum had her first COVID vaccination.
  • Had a difficult video call with one of my tutors about one of the Masters modules, in which I got very upset.
  • Watched Series 1 and 2 of The Bay.
  • My Mum trimmed my fringe for me.
  • Received the about-face makeup (by Halsey) I’d bought and tested it out; I particularly liked the matte lip product.
  • Rewatched Criminal Minds from start to finish.
  • Had several writing sessions with my new friend and coursemate, Phill.
  • Received the Chronic Fatigue Service’s post-session report before they sent it to my GP and corrected all of the errors in it (such as when I was diagnosed with ASD).
  • Watched the film, Taking Lives.
  • Rewatched all three seasons of Absentia.
  • Had another mentoring session, which was really thought-provoking and productive.
  • My university had a reading week so I didn’t have any classes.
  • Had a planning session with Richard after one of our writing sessions.
  • Found the new COVID-19 plan announced on the 22nd February thoroughly unclear and confusing.
  • Watched New Amsterdam Season 1.
  • Wrote several songs based on fictional stories and characters, which isn’t my writing comfort zone but was really fun.
  • Started watching Unforgotten Series 4; I’m ecstatic to have Nicola Walker on my screen again, especially playing such a great character, but given the end of the last series, I can’t help but worry that this will be the last.
  • Had multiple sessions with my friend and coursemate, Simon.
  • Watched the film, Escape From Pretoria.
  • Completed FAWM (February Album Writing Month), actually writing 14 songs in less than 28 days.
  • Had a socially distanced catch up with one of my oldest and best friends.
  • Had a second COVID test.
  • Did several Autism research studies (from home, of course).
  • Dyed my hair.
  • Had a writing session with my friend and coursemate, Joy.
  • One of my best friends, Richard Marc, released his debut single, ‘Put It In A Postcard,’ which I helped write.
  • Had my COVID test come back negative.
  • Learned that my ECG had come back clear.
  • Had official confirmation that I’ve been diagnosed with Hypermobile Ehlers-Danlos Syndrome.
  • Had a meeting with uni staff to discuss the options around the process of changing my antidepressants in order to take medication for my ADHD.
  • Watched New Amsterdam Season 2.
  • Met a potential DSA mentor (it didn’t work out).
  • Was unexpectedly triggered during a seminar and got extremely upset, although I was somehow able to pull myself together enough to manage the class.
  • Bought tickets for me and my family to see Tim Minchin when he (hopefully) tours the UK at the end of the year.
  • Announced the Honest EP (Sunburst Sessions).
  • Fell down the stairs but fortunately wasn’t too badly banged up.
  • Sweep had to go to the vet because she seemed to be having trouble moving around comfortably but the vet wasn’t worried and thought she’d probably been knocked around in all the wind we’ve been having and has given her some painkillers. We also asked if she had any guesses as to what breed Sweep is since we have no idea and her guess is Long Haired Domestic Cat with potentially some Norwegian Forest Cat, so that’s what we’re going with unless we decide to do one of those pet DNA tests.
  • Had a good catch up call with one of my oldest friends.
  • Caught up with The Grammys, celebrated Taylor Swift’s folklore winning Album of the Year, and cried over all of the acceptance speeches.
  • Watched The One (Season 1).
  • Had a particularly good response in class to one of my songs, which is one of my favourite songs I’ve written recently.
  • Had a really productive meeting with my course leader about my Masters final project.
  • Had an upsetting and thoroughly unhelpful appointment with a specialist I’d been referred to.
  • Had 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 they might give us more insight into my fatigue.
  • Posted the first of the Honest EP acoustic sessions, ‘Bad Night (Sunburst Sessions)’.

  • Learned about Travis Meadows’ surgery, donated to the gofundme, and shared the link.
  • Watched one of my best friends, Luce, do an awesome online show.
  • Posted my blog post about being diagnosed with ADHD.
  • Watched Creating The Queen’s Gambit, which just made me want to watch the show again.
  • Joined the judging panel for a songwriting competition.
  • Screeched at the penultimate episode of Unforgotten Series 4.
  • After a really fascinating seminar on Jungian archetypes, I spent hours reading more about them.
  • Suddenly found out quite a lot about my Dad’s side of the family, which was amazing but pretty overwhelming.
  • Had another meeting with one of the tutors to fine tune the approach to my Masters final project.
  • Did an interview with an Autism publication.
  • Attended Betsy Lane’s Zoom party to celebrate her (awesome) new single, ‘Plan For Paris.’
  • Rewrote my professional bio, or attempted to at least.
  • Had a long phone call with one of my best friends, which I think I really needed (plus she said something to me that may be the most special and important thing anyone has ever said to me).
  • Worked on multiple blog posts for World Autism Awareness Week 2021.
  • Had an excited little freak out about Lexie Grey (played by Chyler Leigh) appearing in Grey’s Anatomy again, even though I’m not watching the show at the moment (I just can’t manage living the pandemic and watching entertainment about it – but I loved Lexie so I look forward to watching it one day).
  • Worked with Richard on my next release.
  • I posted the second video in my acoustic session series, ‘Clarity (Sunburst Sessions).’

  • Had a lovely, long call with one of my best friends.
  • Received a late Christmas gift from one of my parents: a vinyl of the Honest EP!
  • Got a very sweet comment from Natalie Hemby (one of my favourite songwriters) on Instagram.
  • Wrote and submitted a research proposal for a conference.
  • Got my first COVID vaccine!
  • *SPOILER ALERT* Was deeply, deeply upset when Cassie died in the Unforgotten finale – I’m not sure I’ll ever feel the same way about the show and I don’t think I’ll be able to watch the next series.
  • Wrote a song about grief called ‘Incomplete,’ inspired by Unforgotten but informed by my own experience.
  • Had the initial meeting about the next and final module of the Masters, called The Major Repertoire Project.
  • Worked on a really special song with my friend and coursemate, Anna.
  • Went to a drop-in session (online) with my tutor to get some advice on my assessment work.
  • Posted the third video in my acoustic session series, ‘Sounds Like Hope (Sunburst Sessions).’

  • Had several video calls with my friend, Luce, where we worked on our songs for our assessment portfolios.
  • My Mum cut my fringe again. It was alarmingly short this time.
  • Put up a blog post for every day of Autism Awareness Week.
  • Had my last workshop of the semester, which felt quite emotional.
  • The research proposal that I submitted for the conference was accepted!
  • Celebrated Taylor Swift re-releasing her album Fearless as Fearless (Taylor’s Version).
  • Posted the fourth video in my acoustic session series, ‘Back To Life (Sunburst Sessions).’

  • Rewatched The Wilds while I worked on various things.
  • Started watching The Shires’ online concert but couldn’t finish it because of family commitments.
  • Got some really exciting news about a creative project I’ve been involved with (I can’t talk about it yet since it isn’t my project to announce).
  • Got a new fidget toy that also seems to be complimentary to my Occupational Therapy exercises.
  • Finished my marking for the songwriting competition.
  • Rewatched Dare Me while I was working on various tasks.
  • Met and had my first discussion with my Major Repertoire Project (the final module and project of the Masters) supervisor.
  • Posted the fifth and final video in my acoustic session series, ‘Honest (Sunburst Sessions).’

  • Ended up spending the day in A&E after three days with a migraine had my doctor concerned that I might be experiencing side effects from my COVID vaccine.
  • Dyed my hair again.
  • Finished my coursework for The Writer’s Voice module.
  • Worked on a song with my friend and coursemate, Alessandro, which incidentally meant that I’d written with every person in the group.
  • Submitted my coursework for The Writer’s Voice module.
  • Celebrated one of my parents’ birthdays.
  • Attended several (online) networking meetings organised by my university.
  • Rewatched Blood & Water (Series 1).
  • Upped my Occupational Therapy regimen.
  • Got a haircut for the first time in MONTHS. 
  • Had another migraine that lasted for several days.
  • Released the Honest EP (The Sunburst Sessions).
  • Had a very distressing and unhelpful follow up appointment (by phone) with a rheumatologist (different from the original one).
  • Hit a stumbling block in getting treatment for my ADHD.

As I said in the last part of this list, hopefully there won’t be reason to continue this post; hopefully there won’t be any more lockdowns. But I guess only time will tell. I’ve found it strangely comforting to keep this list; it’s kind of like a time capsule for these strange periods of time, if that makes sense.

I hope you’re all keeping safe and well and I’ll see you in the next post.

A (Fairly) New Development: Chronic Pain

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.