Mental Health Update (May 2021)

Trigger Warning: This post contains mentions of self harm, but it’s simply a statement that it happened and there are no descriptions, graphic or otherwise. If this could upset or trigger you, please don’t read any further. Please always put your mental health and emotional state first.

So we’ve reached the last semester of the Master’s, with the big, final project that we’ve ultimately been working towards throughout this whole course. It’s a big deal, exciting and scary because – obviously – I want to do well and create a project that I’m proud of. But I am worried about my health, mental and physical, getting in the way and making it a difficult to both work hard and enjoy the process. So I thought, with all of this in mind, I’d write down where my head’s at and how I’m doing – I guess, so that I have a record of how I’m feeling right now, at the very beginning of the project.


At the moment, my biggest difficulties seem to be chronic fatigue and pain that are a result of my recently diagnosed Hypermobile Ehlers-Danlos Syndrome. I’m tired and sleepy all the time; some days, I can barely keep my eyes open during the day. While the physical tiredness is likely due to the hEDS, at least in part, we suspect the sleepiness is due to my antidepressant, Phenelzine. I want to switch to something else as soon as I can but mid-Master’s is not exactly a great time, given how long it generally takes for antidepressants to take effect and my track record of reacting badly to all but Phenelzine (so far, at least). So I’m having to just put up with that, with the dwindling help of Red Bull.

The pain has been really bad, particularly in my legs, arms, and back. For months, I’ve been taking painkillers daily but I feel like, over the last few weeks or so, it’s started to get slightly better. I’ve been doing the Occupational Therapy exercises for my wrists and hands and I’ve been able to start swimming again (yay!), both of which do cause pain of their own but it’s a very different pain and actually wears off pretty quickly while the hEDS pain tends to just get worse and worse unless I take painkillers. I’m getting better at figuring out where my limits are and stopping before I overdo it – most of the time. It’s hard but I do feel like I’m seeing progress.

My depression has been okay recently, much less of a problem than it has been in the past (she says while still on the ‘end’ of one, but I’ll get to that in a minute). I had one awful episode at the beginning of April, which did result in self harming. And then I had another episode last week, which I’m still feeling even if I’m not drowning in it anymore (it was kind of forced to the back burner by the worst migraine I’ve ever had). Both episodes were triggered by really upsetting news; they didn’t come out of nowhere like they sometimes do.

My anxiety has been a lot to deal with, but then there have been a lot of things to be anxious about: keeping up during the semester, the assessment and doing well in the module, all things COVID related (I’ve developed this weird house-separation-anxiety-like-thing whenever I’m out of the house too long, which is horrible), all of my health stuff, preparing for the new module and final project, trying to balance everything in my life, and so on. It’s exhausting and has a knock on effect; the rest of my mental health issues are all affected by my anxiety.

The two areas that are most tightly linked with my anxiety, I think, are my Trichotillomania and my OCD. My Trich hasn’t been too bad of late – not great but not unmanageable. But my OCD has been much more of a struggle lately than it sometimes is. I wrote about it in general here (so if you need a refresher on what my OCD is like, this is probably a useful read) but with everything going on recently, it seems to have kicked up a gear. I just can’t seem to do everything and then write all of it down; there aren’t enough hours in the day, which just leads me to getting more and more behind with everything, which just makes it worse and worse. Again, it’s just exhausting. I feel suffocated by it but I don’t know what to do about it; it feels like the walls are closing in around me and there’s nothing I can do to stop them.

As for autistic meltdowns, I haven’t had many of late. I think that’s because, despite my anxiety, I’ve had a really good few months. As I said in my previous post, this last university module and all the writing that came part and parcel with it was really good for me and I felt really good in myself so, in general, things didn’t build up to the point of meltdown. There were a number of occasions where something took me by surprise (for example, an unexpectedly triggering advert – I hadn’t even known that it was something that would trigger me so that was unfortunate for everyone) and I had a meltdown but as things go, it’s been better than it has been.

I’m not entirely sure how my ADHD manifests yet, having only received the diagnosis recently. If only it were as simple as getting the diagnosis and everything making sense… So I still have work to do in that regard. But I’m fairly certain – as certain as I can be at this point – that my issues concentrating and the feeling of my brain working against me are part of this picture. For the moment though, I’m in the dark about all of this. I’m in an impossible position medication-wise (I’m going to write about this in more detail at some point – it’s just that I’m still processing it all) so I’m stuck and unsure how to manage these problems. It’s frustrating and tiring and I wish there was an easy answer. Or even an easier one than I’m currently faced with. But there doesn’t seem to be. So I’m not sure where to go from here.

And the newest problem – because I really needed more problems… – are these migraines that I’ve been having over the last month. In the past, I’d have a migraine every few months or so but recently they’ve been different. They’ve been completely debilitating, painful to the point that I’ve ended up in A&E and had to have an ambulance called to the house because they’ve been so bad. They’ve also gone on for days when previously I could sleep them off and they’d be gone in twenty four hours. I’ve yet to find pain relief that does a decent job and I find that very scary. Calling 111 and them sending an ambulance because I was in so much pain but so light sensitive that even a darkened room felt too bright is a big deal and I’m scared of what’s next, of how it could get worse. I don’t know what’s causing them and no one else seems to either.

And finally… I’ve been the most consistent with therapy I’ve been since the pandemic began, even if I still find it hard and less productive when doing it over Zoom. But it’s looking like we’ll be back to face-to-face soon, which is exciting if scary – as I said, I’m finding it quite stressful to be out of my house. But hopefully, therapy will go back to being as helpful as it was pre-COVID, when it was face-to-face all the time. I don’t know exactly why it doesn’t feel the same over Zoom – maybe I find it harder to connect and talk about the hard stuff when I’m not in the same room as my therapist – but it just doesn’t, so I’m looking forward to getting back to the room.


So that’s it, I guess. This is my mental health (and I suppose, physical health update) before I start the final module of my Master’s, The Major Repertoire Project. Everything feels very messy and complicated right now, which isn’t exactly reassuring. I want to do well in the module, of course, but I also want to really enjoy it and really get the best out of it. The module doesn’t officially start until tomorrow but I’ve already started working on my project. I’m so excited. I just hope I can manage it with all of this other stuff going on.

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.

Everything Changed For Me This Year (Autism Awareness Day)

Autism Awareness Day always has a theme. Officially, the UN sets the theme but different organisations also choose their own themes; for example, I know that autistica has chosen the theme of anxiety. The official theme (the one set by the UN) is ‘Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World.’ I don’t feel that there’s really anything useful I can add to that conversation, given that I’ve never been well enough to have what society would consider a proper job and that the career path I’m following doesn’t really involve traditional workplaces. So, instead, I thought I’d write about something different, something that has been a really big deal for me this year.

For so long, I just felt like I was broken. And I felt like I was broken in so many places. I couldn’t understand it. Getting the Autism Spectrum Disorder diagnosis helped but there were still all these cracks, all of these problems that no one could make sense of. I had mental health problems, I had chronic fatigue, I had chronic pain, and so on. Nobody could figure out the whole picture and at worst, I was just abandoned by medical professionals, told that my case was just too complicated. That was the most painful part, I think; these people, many of whom it was their job to help with situations like this, were willing to let me continue to struggle rather than put in the effort and help me. It made me feel like I wasn’t worth helping, the toxic best friend of feeling like I was broken.

But in the last few months, with the help of several new medical professionals and some more diagnostic work, the pieces have all slotted into place and, I think, we might finally have the whole picture. So this is the timeline, beginning in 2016 (I might add dates later but I don’t have them all to hand right now).

(I’ve covered some of this before but I think it’s necessary if we’re talking about said whole picture.)

  • I was diagnosed with Depression and Anxiety by one psychiatrist
  • I was diagnosed with Depression, Anxiety, Social Anxiety, Obsessive Compulsive Disorder (OCD), and Borderline Personality Disorder (BPD) by my long term psychiatrist.
  • I was diagnosed with Autism Spectrum Disorder and had the BPD diagnosis confirmed at the local Neurobehavioral Unit.
  • My therapist explained that my mental issues, particularly my BPD, may have stemmed from the continued invalidation of my ASD.
  • A few years passed.
  • After a discussion with my psychiatrist, my mental health related diagnoses were updated, changing to Treatment Resistant Depression (TRD), Generalised Anxiety Disorder (GAD), and BPD.
  • I was (re-)diagnosed with OCD after further sessions with my psychiatrist.
  • My GP diagnosed me with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) when we could find no obvious cause for Chronic Fatigue I’ve been dealing with since I was twelve.
  • A couple of years passed.
  • I started to develop Chronic Pain that got dramatically worse over a period of several months.
  • I was referred to a specialist who diagnosed me with Hypermobility (apparently individuals with Hypermobility are seven times more likely to be autistic), which led to a diagnosis of Hypermobile Ehlers Danlos Syndrome (hEDS), explaining my Chronic Fatigue and Chronic Pain as well as a number of other ‘smaller’ symptoms that, due to the bigger problems, had been ignored. This, as far as I can tell, makes the ME/CFS diagnosis void.
  • I was also diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), many of the symptoms overlapping with my ASD, during the same period.

And suddenly all of the pieces started to click together:

THE MENTAL HEALTH ISSUES (TRD, GAD, OCD, AND BPD) AND ADHD ARE, AT LEAST IN PART, CONNECTED TO MY ASD.

MY ASD AND HYPERMOBILITY ARE LINKED.

THE HYPERMOBILITY LED TO A DIAGNOSIS OF hEDS, WHICH EXPLAINS MY CHRONIC FATIGUE, CHRONIC PAIN, AND OTHER PHYSICAL SYMPTOMS.

Discovering that it’s all connected has been a really helpful and comforting revelation. I’m starting to see each condition as a star in one big constellation and that’s a hell of a lot better than feeling inexplicably broken in multiple places. I still have to deal with everything that comes with each of these conditions, of course, but knowing that they’re all part of the same picture does make my health less draining to think about and manage. It all makes more sense. And I am a person that needs things to make sense. So this is all a really big deal.