Finding HopeA (Fairly) New Development: Chronic Pain
Posted on March 27, 2021
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.
Put It In A Postcard by Richard Marc – Out Now!
Posted on March 1, 2021
So today, one of my best friends, Richard Marc, has just released his debut single, ‘Put It In A Postcard,’ and on his birthday no less! I will always share his music on all of my social media but I wanted to share this on here because, while it is completely Richard’s song, I did help with the writing of it and I’m proud of my part in that. It’s a super cool, catchy song. Please go and check it out!
February Album Writing Month 2021
Posted on March 1, 2021
So, every February for the last several years, I have been attempting FAWM or February Album Writing Month, an annual songwriting challenge where participants try to write 14 songs in the 28 days of February. And it’s definitely a challenge. If you have a job, are in some form of education, or have time consuming responsibilities (such as looking after family, handling health issues, etc), you likely have limited time to write. But having a time based challenge like FAWM – with a Twitter spitting out prompts and forums full of people sharing ideas and tips – can be a really great way to help carve out some time and boost motivation. I’ve always found it to be a great experience, one that has produces really interesting songs, whether I actually manage to complete the challenge or not.
I completed it last year and wrote some songs I’m really proud of it, plus I had so much fun, so I was really excited to do it again this year. I was collecting ideas and come 1st February, I was raring to go but then a lot of difficult medical stuff came up, hitting me like a ton of bricks. All of that really messed with my head and it suddenly felt a lot harder to manage everything: my physical health, my mental health, my uni work, writing at all, let alone extra writing. I felt like I was constantly on the edge of burning out. But then, as time passed and I worked my way out of the fog, I was able to focus on songwriting again and, for the second year in a row, I managed to complete the challenge of writing 14 songs in 28 days.
These are the songs I wrote:
- One More Time – Coming out of a really tough time, I think I wrote this song kind of to myself, encouraging and reminding myself to get up ‘one more time’ because that’s the only way to get through. It was hard to write but I knew the moment I hit the right chorus and I just fell in love with it. It’s definitely one I’d like to release at some point; hopefully it can can do the same thing for someone else as it did for me.
- Astronaut – Having always been fascinated with space and the stars, I was always going to end up writing at least one song about being an astronaut (funnily enough, the FAWM Twitter’s prompt the next day was about being an astronaut). I’m not sure it’s quite there yet but I feel like it’s a really solid foundation and I do love some of the lyrics and melodies, so it’s just about really tightening it up, I think.
- Half of the Conversation – This song started as a cowriting exercise in a uni seminar and we all liked what we came up with so much that we kept booking sessions together until we finished a first draft. One of the group wants to use it, which the rest of us are totally happy with. So I’m currently trying to arrange a session with him to redraft and make sure he’s happy with it.
- Taking Care of Me – This one is another cowrite with a friend/coursemate. We’ve been meaning to write together for ages and we finally managed to make it work (with plans for another session to redraft and make the song the best it can be). We had a really fun session that started on one idea and ended up on a completely different one, about practicing setting boundaries and making time for yourself and putting yourself first when you feel that it’s best for you. I really like what we came up with, plus it has one of the oddest lyrics I’ve ever strung together in it.
- Prison (Redraft) – I first wrote ‘Prison’ during FAWM last year and was really proud of it as a first draft but with the pandemic and then going back to uni, I haven’t managed to work on it again until now. I’m really pleased with the new and improved version and I feel like the metaphor is even stronger.
- Keep The Memories – I wrote this song with a friend/coursemate, about a person who screwed me over and really messed me up (although I should’ve seen it coming). We have quite different styles but we ended up with something really cool, something that I definitely wouldn’t have done on my own. I’m still tidying it up and refining it but it was a really fun experiment and I’m pleased with it as a first draft.
- Roots (Redraft) – I cowrote this with a friend/coursemate just before FAWM began and then, during FAWM, we had another session where we worked on it. We both really loved the first draft but we experimented with some sections and refined others and hopefully made it better. I think it’s one of my favourite cowrites to have been a part of.
- Father’s Eyes – I wrote this song with the same person I cowrote ‘Roots’ with and while it was hard to write – writing about my Dad always is – I feel good about what we’ve come up with. It’s not exactly comfortable but it’s honest and special and I’m grateful to have had someone I felt safe with to explore the idea and write the song with. I’m looking forward to working on it more and getting it just right. That will feel really good.
- Last One Standing – Since the pandemic, I’ve been experimenting with writing stories based on fictional stories and characters. This particular one is about Daisy Johnson from Agents of Shield, possibly my all time favourite show, about her owning how truly powerful she is and how important SHIELD and what SHIELD stands for are to her. I love this song so much. I’ve already edited the lyrics a few times to make sure it’s as clear and impactful as possible and I think it’s really close to being done.
- Soul – Another fiction-based song, this one is from the perspective of Emily Byrne from Absentia, another of my favourite shows. It covers some of her emotional processing at the end of Season 1, after her trauma, after being on the run, after the mystery is (apparently) solved. It’s not my favourite song I’ve written but the idea and the melody just wouldn’t let me go. Maybe I’ll come back to it at some point and find a better way to do what I was trying to do.
- Ashes – This one is another Daisy Johnson inspired song, inspired by the end of Season 3 where *SPOILER ALERT* she abandons SHIELD to go after the Watchdogs (as we later find out in Season 4). We don’t see her make that decision in the show and I’ve always been intrigued by the various ways it might’ve played out. I wrote this from her perspective, when she’s still very much drowning in her guilt and pushing away all the people that care about her.
- Hurricane – I already have a song called ‘Hurricane’ but when it comes to this song, not only is ‘Hurricane’ a working title but I highly doubt I’ll ever release this song. It was another experiment, another Absentia inspired song based on the early interactions between Emily and Cal and how their traumatic experiences give them a deep understanding of each other, something that they haven’t received from anyone else. I always really liked that about their relationship, that even though their experiences were different, there was a level of understanding unique to the two of them, something that strengthens both of them. So I tried to write a song about it. Again, I’m not sure I’ve gotten it right yet but there are parts of it that I really like.
- Monster – My third and final Absentia inspired song revolved around how various people and circumstances tried to turn Emily into a killer, into a monster. And when I started writing it, I intended for this version of Emily to embrace that, like, ‘Okay, you want a monster? I’ll give you a monster.’ And while that’s how the narrative played out, it became more complex. Almost of her own accord, she embraced what they’d given her (the skills, the emotional compartmentalisation, and yet this unrelenting rage, etc) and turned it back on them. She flipped the script: ‘You wanted me to be a monster? Well, here I am and this is what I’m capable of. Are you scared yet?’ It was probably the most interesting writing process during FAWM; I felt more like I was along for the ride than I had with any of the other songs. It’s not perfect yet – it needs some redrafting – but it feels like a really solid song.
- Even Me – I wrote this song with a good friend/coursemate about how, after a break up, all the things and places that were made special by the relationship feel ruined. We had such a great session: it was really productive but we also had so much fun and I’m really happy with how it’s turned out. It needs some refining but I feel like it’s a really solid first draft.
- Redraft of a friend/coursemate’s song – I didn’t cowrite this song so I don’t think it’s fair to share too much about it but a friend from my course asked if I’d help her redraft and refine a song she’d written and we had a really productive session. We did some restructuring to improve the flow of the narrative and the narrator’s journey; we switched out some lines to add emotional impact; we rewrote a section to add another layer to the situation described. The song was good already but I feel like we really tightened it up. It felt really collaborative and I had a really good time. Bringing a new idea to life is magical but there’s also something deeply satisfying about honing an idea to, hopefully, be the best it can be.
I actually worked on several more songs but didn’t manage to finish them or couldn’t arrange the cowriting sessions within the time period to finish them. And while most of these songs are still first drafts, I feel really good about a lot of them and where they’re headed. So I’m pretty proud of myself, especially considering how much I was struggling earlier in the month.
Although it’s called February ALBUM Writing Month, I don’t tend to think about writing a cohesive album, more an album’s worth of material. Creating a really good body of work takes so much thought and planning and usually a lot more than 14 songs to get a really good, cohesive body of work. But the challenge gets me so excited and energised when it comes to my songwriting that that’s the real benefit for me. I’m not going to be able to keep writing at this pace with all my uni work and health stuff going on, but I’ve really enjoyed this time to really dedicate to my writing and obviously I’m going to keep writing as much as I can around everything else I’m balancing.
I’d love to include links to these songs so that you guys could hear them (recording, production, and uploading is part of the challenge but I don’t want to put them out there when I don’t know what’s going to happen with them). I haven’t had time but, as I said, I don’t know if I’m going to release them or not and I wouldn’t want to spoil that. Because some of these songs are definitely headed for release…
Finding Hope 