Seeking Help For Chronic Pain (Year One)

After the Hypermobile Ehlers-Danlos Syndrome diagnosis, one of my many referrals was to the Pain Clinic (something I didn’t know existed). At that point, I’d been in pain for about eight months and the fact that this thing even existed had me feeling optimistic for the first time in ages. But then the weeks started passing and that feeling faded. In that time, I believe there were a number of other referrals from the Physiotherapy and Occupational Therapy services so I don’t know how many times they actually had requests about me but someone finally got in touch five months after the initial referral.

This post spans from May 2021 to April 2022.


MAY 2021

The initial contact was over the phone. We got a call from one of the Pain Clinic team and we had a long conversation; we were on the phone for an hour. She asked me loads of questions and got a detailed history; she also talked me through what the Pain Clinic does and what they can provide. She went away to go over the notes she’d made and figure out what a good next step would be and we had a chance to think about what might be the right path for me.


JULY 2021

Seven weeks after the first call, we got a second call from a different woman; apparently she had a different background to the first woman we’d spoken with and had a load of different questions. We spent another hour on the phone and before we hung up, she told us that she would be taking her notes to the team (which is made up of a group of different clinicians and therapists) and that they would get back to me with their suggestions.

Two weeks later, she called back and, after some discussion, we decided that seeing a pain psychologist was the best way forward – understanding pain, understanding chronic pain, figuring out the triggers, learning how to manage it, and so on – and she set up the first of the six sessions.


AUGUST 2021

The first session was an hour long video call. We’d somehow missed the information packet that the pain psychologist had sent but she was kind enough to go through a lot of the information – a basic understanding of pain – during the session. It was okay but it was very focussed on managing pain, which felt incredibly frustrating: I was fine until May 2020 and then suddenly I was in pain and at no point had anyone stopped and asked why and I want to know why. But no one seems interested in figuring out the why. I got very upset: I spend my whole life just managing things. I don’t even really feel like a person anymore, just a collection of problems that need managing that leave me no space or energy for actually living. The call ended in tears with me curled up in a depressed ball on the sofa.

Given how much the appointment had taken out of me, we decided that it was just too much while I was in the final stretch of my Masters, which the psychologist was really supportive of, and we arranged to start again when it was over so that I could really make the most of the sessions.


OCTOBER 2021

I had my second session five weeks after I finished my Masters (I was completely exhausted from the final semester and, with my Granny’s death, it took me a while to find my feet again). It was mostly a catch up about how my pain had been since the first session; we talked about how constant it had been (just sometimes better, sometimes worse), how it doesn’t seem to be triggered by anything specific. I got so distressed just talking about it that the psychologist suggested that we talk to the advanced practitioner for more insight into hEDS related pain. She said she’d talk to their team and recommended I talk to my GP about a better pain medication. We, again, agreed to pause the sessions until we had some clarity on those two things. I still haven’t found a pain medication that works reliably but it wasn’t long before we got a letter for an appointment with the advanced practitioner.


NOVEMBER 2021

At the beginning of November, I had the appointment with the advanced practitioner. In hindsight, it was probably doomed from the start, considering how unwell I was having just started the ADHD meds – I had to stand outside for a good ten minutes trying to get the nausea under control. And then, just because things had to get worse, I got hit by the electric shock like pain in my back right as the appointment was starting; I could barely hear what everyone was saying, the pain was so debilitating.

As it turns out, there had been some sort of confusion or miscommunication because the two doctors were under the impression that they were showing me some physio-like exercises rather than give me guidance about hEDS related pain as I had discussed with the pain psychologist. One of them just kept talking about all of the “ingredients” of pain – like diet, sleep, exercises, medication, levels of anxiety, emotional state, and so on – and after a while, I just couldn’t keep my mouth shut. I was upset, in pain, and feeling so sick; I just couldn’t listen to another person give me vague advice without telling me how to actually apply these things to my life with all of my problems. And, on top of that, I was sick of everyone dodging my questions: why would this pain just start and why is ‘management’ the only thing being talked about? Why is no one interested in finding out why it started and whether it can be fixed? When the pain started, the only thing that had changed was my anxiety over the pandemic and it’s not like I was the only person who was experiencing that. So why did it start? If it can just appear, what’s to say it can’t disappear again if I do the right things (which obviously relies on me knowing what the right things are)?

Eventually this doctor gave me a somewhat murky explanation: that the trauma of the autistic challenges and the anxiety relating to the pandemic, compounded by the de-conditioning of the stabilising muscle in the early months of the pandemic, has resulted in the pain I’ve been experiencing. I’m not convinced by this but it’s the closest thing to an explanation that I’ve received so far. Anyway, they said that they’d take my case to their multi-disciplinary meeting and see what the suggestions were. I’ll take what I can get but I didn’t have a lot of hope: the last time I was in a similar situation, the Chronic Fatigue Service told me my case was too complicated and then just abandoned me. I’ve also had NHS doctors tell me that the NHS can’t help me and that I should go private – like that’s the automatic next step. They do know how expensive private healthcare is, right? Particularly if you have a chronic condition? So I did not leave that appointment feeling optimistic.

Later that month, we got a letter informing us that the original referral to the Pain Clinic from December 2020 had just gone through. Eleven months that took. I’m trying to be grateful that one of the other referrals went through faster but it was hard when it felt like we hadn’t made any progress at all.


APRIL 2022

The pain had reduced some by the end of 2021 but it flared up again (mostly in my hips and lower legs) in early February, which was likely exacerbated by my lack of movement while struggling with the effects of the ADHD meds – extreme nausea, depression, insomnia – and therefore not swimming. Things were better for a while – between more daily movement and starting hydrotherapy – but then it flared up again in late April, with awful pain in my elbows, arms, and hands.


When I realised how long this post was getting, I decided to split it up by year (yeah, because the whole process took actual years). This is the first instalment from Spring 2021 to Spring 2022. The next part will be up soon.

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.