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.

Goals for 2021

I think it’s safe to say that we have no idea what this year is going to look like so making resolutions or goals could seem a bit pointless. But considering everything last year, I did make some recognisable progress with my 2020 goals, something I’m really proud of considering how much I was struggling. Yes, it’s a bit of a shot in the dark to make any sort of long term plans this year but I find that having goals like these give me some direction, some structure, which is especially helpful when I currently have so little external structure in my life. (As I said in my previous post, I prefer goals to resolutions: I find that resolutions create unnecessary pressure whereas goals help me to focus on particular areas. That works better for me but then I’m sure that that pressure is helpful for others.)

Since we don’t know what this year will hold, I’m still going to make goals. If I have to abandon them, then so be it but otherwise, they’ll hopefully be a helpful tool in moving through the year, creating some internal stability if nothing else. I’m hopeful that I can make progress in all of these areas: in my physical health, in my mental health, and in my work.


FIND A RHYTHM IN THERAPY AGAIN – The pandemic and lockdown have really thrown a wrench in my therapy sessions. Not only have they been physically disrupted, in the sense that they’ve moved from in person to online, but the pandemic has done such a number on my mental health that I couldn’t even cope with going to therapy for a while. And now that I’m going again, I feel like I don’t know how to do it anymore. I have a really good relationship with my therapist so I don’t know why I’m finding it so hard to talk about stuff; we just end up catching up about what’s happened between sessions. I really want to find a way back to the place where we really dug into things, the big things that affect me and my mental health. I’m not sure how to do it but my therapy sessions are so vital that it needs to be done so we’ll have to figure it out.

PROGRESS WITH MY INVISIBLE BRACES – Given how up and down last year was, I’m surprised I managed to wear it at all but this year I really want to build and embed the habit in what daily routine I have. The main problem is that, often, I’ll need to take a break and suddenly I haven’t worn it in months. So I also want to work out how to take a break without completely breaking the habit.

WORK ON MY CORE – For hypermobile people, the core muscles are particularly weak, which can cause referred fatigue and pain throughout the body. When I was diagnosed, the specialist asked what exercise I did and I talked about how much I loved swimming, how good it feels to exercise without having to bear the weight of my body. She said that swimming is the best possible exercise for a hypermobile person, especially someone actively dealing with pain and fatigue. I certainly didn’t need the encouragement to swim more. Where possible (in the context of the pandemic and lockdowns), I want to keep swimming as much as I can, as well as practicing the basic hydrotherapy exercises I’ve been given. I don’t know when my referral for hydrotherapy will actually go through, when I’ll actually get sessions, but hopefully it won’t be too long and hopefully that will help with the fatigue and pain.

COMPLETE MY MAJOR REPERTOIRE PROJECT – The final module of the Masters is dedicated to researching, writing songs, and creating a body of work around a particular subject. I’ve been really looking forward to this module, and hearing about the subject matter investigated by my course mates from last year (familial connections, identity, and gender transition, for example) and the work they created has only inspired me more. I have multiple ideas that I’d love to work on, although there are two that stand out more than the others. So I’ll have to choose at some point but we’re encouraged to remain open until just before the module starts. I’m so looking forward to really diving into a project and hopefully I can use my enthusiasm to help me get the best grade possible.

FINISH MY MASTERS DEGREE – By the end of September, I will have finished all of the modules and assessments of the Masters, all being well. With everything that’s happened since the start of the Masters, just finishing it will be an achievement in its own right but I really, really, really want to do well. It would be incredible to get a Distinction (that would be my ideal scenario) but, as I said, with everything that’s happened and how much I’ve had to deal with, that may not be on the cards. It might be initially disappointing to end up with a Merit but I know that, given some processing time, I could get my head around it and be proud of it.

MAKE SIGNIFICANT PROGRESS IN CATCHING UP WITH MY DIARY – Due to my university work and the ups and downs of my mental health, I’m majorly behind with my diary (although I do keep rough notes) and while I’m not sure how I’m going to manage this, I want to get the situation more under control. Being behind just causes me so much anxiety. The university work isn’t going anywhere though and I want to do my best there so I obviously need to find a solution to this problem before I can start implementing it. I’m hoping therapy can be useful here.

WORK ON NOT COMPARING MYSELF TO OTHERS, ESPECIALLY WHEN IT COMES TO MUSIC – This was a goal last year but between the pandemic disrupting the entire music industry and my sporadic therapy attendance (in which I’d planned to work on this issue), I didn’t make nearly as much progress as I would’ve liked. This is what I wrote last year and I think it’s still fairly accurate:

This is probably the hardest one and a lot of the time, it feels unbearable to even think about. While I need to work on not comparing myself to others in general – in all situations – I figure that’s too big a task for such a difficult feeling so I just picked one area. Music has always been my happy place and I want it to stay (or go back to being or something) my happy place and it’s not, when I look at other artists and feel lost and sad and lonely and angry and bitter. So I want to work out – probably with therapy – how to focus on me and not worry about other artists beyond a practical, objective sense. This feels really, really hard so I don’t know if I’ll manage it in a year or whether I’ll even manage to start but I want to so I’m trying to think about it and figure out a place to start because I don’t want to feel all of these things. I want my happy place back.

Having released more music and received good feedback over the last twelve months, I think my self-esteem and confidence is a bit higher but it doesn’t take much to tip me into that black hole. I really, really want that to stop happening so whatever it takes to avoid those feelings (for the majority of the time, at least), I’m willing to do it and do it for as long as necessary. I want music to be a positive part of my life, not something that’s draining.

FIND MY NEXT PROJECT – As I’ve previously said, there is more content coming that’s part of the Honest project but now that all of the tracks and music videos have been released, I want to work out what my next project is going to be, what the next creative goal I want to work towards is. I may find it during my last two Masters module, I might find it after, or it might find me. I’ve got a lot of ideas I want to explore so I guess it’s just about figuring out which one is the best fit for me in this particular period of time. Whatever it turns out to be, I’m excited. The Honest EP has been such a gift, such a wide and wonderful experience, that I can’t wait to see what the next project has in store for me.


As I said, we have no idea how this year is going to unfold so I don’t know what I will or won’t be able to achieve (in terms of what’s possible with the pandemic and my personal health – physical and mental – in the mix) but these are the areas of my life that I want to work at. If nothing else, last year showed us how strong and adaptable we can be, so who knows: maybe I’ll make progress in all of them or maybe I’ll make progress in entirely different things. I guess we’ll just have to wait and see…