Finding HopeSeeking Help For Chronic Pain (Year One)
Posted on July 8, 2023
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.
The First Six Months of Hydrotherapy
Posted on August 13, 2022
When I was first diagnosed with Hypermobile Ehlers-Danlos Syndrome back in October 2020, hydrotherapy was recommended both for general fitness and muscle strength (which would, in theory, help with the back and leg pain I was struggling with) and to build up my core muscles, which are a notoriously weak area for hypermobile people. I was up for that since I’ve always enjoyed being in the water but COVID made the whole process very complicated and very slow.
As far as I can tell, with the way things currently are, it seems that the way to get a referral for hydrotherapy is to be referred for physiotherapy and then a physiotherapist assesses you and refers you on to the hydrotherapy department. I’d been referred for physio three times, I think, by three different doctors between May 2020 and when I finally got an appointment in November 2021. I find myself feeling a level of righteous indignation over waiting eighteen months for a simple referral, especially when I was in pain pretty much every day, but I know it was all more complicated than that. COVID was the obvious cause for the delay but the NHS waiting lists are also incredibly long anyway. But, as soon as it all started happening, it all happened at once.
At the beginning of November 2021, I met with a physiotherapist and he referred me on to the hydrotherapy department and at the end of the month, I had an appointment with them. I will admit that, after waiting eighteen months for an appointment, I was a bit appalled that the appointment consisted of just a half hour run-through of exercises to do without a huge amount of guidance. But this is how the system works and I’ll take what I can get.
While I continued swimming in my ‘normal’ pool, I struggled to find a pool that allowed me to do all of the exercises I’d been assigned: the height of the water needed to be within a certain range, I needed to be able to walk in the water, I needed a step of a specific height and width, and so on. And finding a pool that fitted all of the requirements was difficult, and that was without all of my COVID related anxieties being factored in. We finally found a pool just as Omicron started rearing its head and I had a meltdown leaving the first session; I was massively overstimulated and my anxiety was just overwhelming. Those weren’t exactly fond memories that I was keen to revisit but it wasn’t going to work anyway as the steps didn’t allow me to do the step related exercises and there are too many of those not to have access to the right kind of steps. I was managing a modified version of the exercises in my usual pool while we searched for another hydro-friendly pool but then Omicron hit in earnest and we all retreated inside to insure Christmas could go ahead as planned.
From December 2021 to early March 2022, I was incredibly unwell because of the ADHD medication I’d been trying, too unwell to swim at all. But, in that time, my Mum had found another pool. The first session went well (although it was really hard work after so little movement for a couple of months) and the set up of the pool meant I could do all of the suggested exercises. I got a few sessions in before I left for Nashville in late March.
Back from Nashville and semi-recovered from the jet lag in late April, I got back in the pool, both to swim and to do my hydro exercises. It took a bit of work and scheduling but after a while, I managed to build in two sessions a week while I got used to the routine and started building up my strength and stamina after so little proper exercise for so long. I’ve had multiple conversations with multiple health professionals about my tendency to throw my all into stuff and how I need to take things slowly if it’s going to actually help so, even though it’s very frustrating, I am trying my best to push down that irritation and just focus on the exercises.
So, that was my first six months of hydrotherapy. There’s a few months between where this post finishes and where I am now but I thought those first six months were important to document. Since then, I had to stop using one pool and tried out another – which I love – despite difficulty actually getting out to swim because my mental health has been so bad.
Although it hasn’t been a priority (and still isn’t one really – one thing at a time), I do want to find a new all-round gym since the gym I used to go to closed down after the multiple lockdowns. I want to get fitter; I’m just having to take a longer route than I would’ve previously thought.
Goals For 2021 Reviewed
Posted on January 1, 2022
In hindsight, I don’t really know what I was thinking, setting goals when I had no idea what the year was going to look like. I’m not really surprised that I haven’t done as well as I would’ve liked, had the year been a normal year. But it wasn’t a normal year and I try to remember that when I feel myself getting stressed.
FIND A RHYTHM IN THERAPY AGAIN – This has been a tricky one. For various reasons, my therapy was fairly erratic for the first half of the year and then I wasn’t going at all until just a few weeks ago. A lot has happened and a lot has changed and going back is hard; it feels like I’m learning how to do therapy all over again. But we’ve worked through tough periods before. There’s no reason why we can’t figure out this one too.
PROGRESS WITH MY INVISIBLE BRACES – Okay, I officially failed at this. I’ve actually slipped backwards, going back to an earlier mold. It was just that, with everything going on, sleeping was the one time where I didn’t feel some sort of sensory overwhelm and I was so reluctant to lose that one safe space. I have worn it a little but not enough so I need to figure out a more manageable way to wear it.
WORK ON MY CORE – This has been a tricky one. Since the lockdown ended, I’ve been swimming as much as I can (and feel able to depending on various things: mental health, COVID numbers, etc) and I do feel like it’s helped, although it doesn’t feel like the pain mirrors how much or how little swimming I’m doing. Eleven months after the Hydrotherapy referral, I got a Physiotherapy appointment which resulted in them referring me to Hydrotherapy and a month or so later, I finally got a Hydrotherapy session. I’ve been doing the exercises by myself and I have a follow up appointment in the new year to make sure everything’s happening as it should. It’s too soon to know what effect it’s having but hopefully it’ll help with some of the problems caused by my EDS.
COMPLETE MY MAJOR REPERTOIRE PROJECT – I did it! It was hard work and utterly exhausting and, by the end, I was working twelve (or more) hours a day but I absolutely loved it. I loved being totally absorbed by one project and just writing as many songs for it as possible. I did struggle to balance what I wanted to do with the project with what I needed to do for the grade (although it’s true that trying to meet that criteria did result in it being a better project) but I had a fantastic supervisor, who was passionate and knowledgeable about a lot of the same things as me and who was also neurodivergent, which I think made a big difference when it came to tackling problems and her general support; my project was better because of her help. The day of my final presentation was a bit anti-climactic after everything and suddenly it was all over. But I’m so proud of the work I did, the many songs I wrote, and the mark I achieved, my highest out of every module. I’m so relieved, so happy, so proud, and so grateful to everyone who helped me get there. It was the best part of this year, easily.
FINISH MY MASTERS DEGREE – I still kind of can’t believe that I did this, given everything over the last couple of years. It’s so weird to look back at the beginning of the Masters in late 2019, knowing what I do now. But I did it: I completed my Masters Degree in Songwriting. During a global pandemic no less. But despite that, it was still an amazing experience; I met a lot of incredible people, I did a lot of work that I’m so proud of, and I got so much out of it. I’m so proud of my final project in particular and it was amazing to get such a high grade, as well as the Outstanding Student Award at graduation; that meant so much to me after everything that went in to getting the degree. And while I am excited for what comes next, I’m also really, really sad that it’s over; that’s the end of my education at ICMP and I don’t want my time there to be officially over. I loved my BA but doing an MA was the best thing I’ve ever done. It was beyond difficult and there were times when I hated it but it was an amazing experience and I’m so proud of myself and the work I did.
MAKE SIGNIFICANT PROGRESS IN CATCHING UP WITH MY DIARY – Yeah, no, I did not manage this. I’m barely managing to keep up, let alone clean up the messy notes I’ve been keeping over the last two years. My diary writing is in a state of chaos right now. It takes up so much time and causes me so much anxiety but I can’t stop; my OCD won’t let me. So I’m just keeping on keeping on; I don’t know what else to do.
WORK ON NOT COMPARING MYSELF TO OTHERS, ESPECIALLY WHEN IT COMES TO MUSIC – I think it’s fair to say that this is probably something I’ll be working on for the rest of my life; it’s not something that will ever be done, complete. I’m not sure if I’d say I’ve made progress with this but I do think I’ve learned a lot about myself and my insecurities. Two big factors that affect those insecurities are my mental health and how much I’m writing. When my mental health is good and I’m doing a solid amount of writing, I feel more comfortable and confident in myself and what other people are doing doesn’t feel scary or upsetting; they feel inspiring and exciting. But when my mental health is bad – and thus, my ability to write disappears – everything feels just too much. So most of the year was great, apart from a few dips, but my mental health hasn’t been great over the last two months – or in other words, completely fucking awful – so that’s what I’ve been focussed on: trying to make that better.
FIND MY NEXT PROJECT – This goal kind of makes me laugh now. To think I wanted to find my next project and now I have more projects than I know what to do with. It’s kind of stressful, trying to manage so many things at once, but it’s also wonderful to have so many things that I’m excited about. They’re all in process right now and I don’t know how they’re going to turn out so I don’t want to say anything yet, but I definitely found my next project.
This year has been a hell of a year for many reasons and while there were many negative surprises, there were also positive ones; those just aren’t always visible in the review of goals set at the beginning of the year. I’m really proud of a lot of things from the last twelve months and, given everything that’s happened, I’m actually kind of impressed that I was able to complete any of these goals at all. So I’m trying to focus on that.
Finding Hope 