Finding HopeSeeking Help For Chronic Pain (Year Three)
Posted on July 6, 2024
It’s been more than three years since I started pursuing support for the pain I experience and still I have nothing from the NHS. I go to hydrotherapy as often as I can, although I’m still waiting for the second NHS Hydrotherapy appointment to assess the exercises as I feel I need a harder routine and have been waiting almost six months for that. It’s helpful and I do often enjoy it but I’m still in pain a considerable amount of the time. My GP has said several times that she’ll reach out to the Pain Clinic but we still haven’t heard from them; I haven’t had contact with them since the appointment in November 2021.
This post spans from April 2023 to March 2024.
SINCE LAST UPDATE
Since the last update, I had periods of unpleasant pain but nothing worse than my usual levels of pain. I usually experienced it in phases where it got bad and then receded to all but nothing. I had days where I felt like the only problem was muscle weakness rather than actual pain (despite the hydrotherapy) but most of the time there was some kind of pain in some part of my body; I just didn’t always notice it because I’m so used it at this point. Sometimes I forget to take painkillers because I don’t recognise that what I’m feeling is pain.
JUNE 2023
Everything was normal – I was still waiting for an appointment with the NHS Hydrotherapy Department and my GP was still chasing up the Pain Clinic – until I managed to seriously hurt my back. I don’t know what I did. I really don’t. I was sitting on the ground, playing with my neighbours puppies, and then, when I tried to get up, my back was so painful that I could barely move. At first I figured that sitting on the ground without any support for my back had just resulted in a strained muscle or something and that a few hours on my heat pad would sort it but hours later, I still thought I’d collapse or scream or throw up if I so much as turned slightly to one side or the other; it was horrendous. I think it was honestly the worst pain I’ve ever experienced in my life; at the very least, it’s in the top five. It was worse than the cracked rib, no question.
Again, I thought a few days of the heat pad and painkillers would, at the very least, get the healing going but almost a week later, I was still barely able to move and the muscles spasmed several times that resulted in me sobbing on the floor, unable to get up – actually physically unable. We had to call 111 several times because of the days and times of those moments (and because I genuinely felt like I couldn’t move and therefore get up and go to the doctor). I was taking my strongest painkillers but they weren’t making that much difference and I could only take them for three days at a time; I dreaded the days when I couldn’t take them. Plus my sleep was terrible because the pain woke me up every time I turned over.
Eventually I had to go to the doctor and he was convinced by my pain straight away, given that I was hobbling like someone who’d just celebrated their hundredth birthday. He was understanding and sympathetic and recommended medication for a few weeks before reassessing. He ran through the options (I’ve already tried most of them and found them ineffective) and almost prescribed me Tramadol (a drug my arthritic dog used to take, which amused me) but then he discovered that it would’ve interacted badly with my antidepressant, Phenelzine (something I’d already assumed before he could even look it up). So he gave me a combination of weaker ones and said that, if those hadn’t worked in a couple of weeks, then we would revisit and try something different.
I had to keep my movement extremely limited but I also used a back brace when I did need to do things. It wasn’t the most comfortable thing but the support allowed me to do a bit more and live some life that wasn’t confined to the sofa. The pain killers helped somewhat, at least at the peak of their effectiveness, but it wasn’t until a physiotherapist we know suggested a TENS machine that things really changed (this was about three weeks after the pain started). We attached it to my back, turned it on, and the relief was so overwhelming that I thought my knees would collapse under me. The pain was gone. Well, gone where the pads were attached and it was amazing. It’s not a perfect system – although, if I bought a ridiculously expensive one, it might be – but with that attached to me, I could move around, I could lean, I could actually do things. And I wasn’t constantly exhausted and miserable from the pain.
JULY 2023
More than a month after I originally hurt my back, it was still troubling me, although not at all to the same degree as it had been; between painkillers, the TENS machine, and slowing moving more and more, I got back to almost full movement without pain. I still had to be a bit careful about stretching, and twisting, and lifting but, for the most part, I was back to normal – my normal, at least. Because my normal almost always involves some level of pain in some part of my body.
It was around the month mark that I got back to swimming and hydrotherapy and I was vaguely appalled by how much stamina I’d lost in the time since I’d last been going to the pool consistently (which had almost been two months between the back pain, my trip to Germany, and a closure at the pool). I had to work really hard not to overdo it and go back to my old routine straight away, building up again, but it was extremely frustrating. My work in the pool did aggravate my back a bit and it took some TLC after each session but very, very slowly, things started to get back to normal.
In mid-July, I also started physiotherapy, trying to build up the strength and stability of my muscles, especially my core, as is recommended for Hypermobile Ehlers Danlos Syndrome (she said some really interesting things about hypermobility – specifically as it applied to exercise but it was also interesting in general – and I couldn’t wait for this post to talk about it so I posted about that here). It felt like a somewhat humiliatingly ‘easy’ routine to be completely exhausted by but if it’s going to help with the pain, help me swim more, help me survive the Taylor Swift concerts next summer… I’ll do whatever it takes. The early days of the exercises were tough but it was kind of exciting, knowing that I was moving forward bit by bit, slowly getting closer to my goals. I can’t remember ever feeling strong or in complete control of my body and while I don’t feel that way at this point, I can’t help the little surge of hope that all of this will get me there one day.
I also read about a charity swim in September and that got me really excited. I swear, almost all charity challenges are fitness related – always charity walks or runs – which I find deeply frustrating because I want to help and be involved but I just can’t handle those; I can’t even walk very far without it feeling like there’s glass grinding in my joints. But a swim is perfect. And likely because it’s in aid of a charity, it’s very accessible, the idea being that you choose the length of swim that will challenge you without pushing you to an unsafe or uncomfortable point (one of the lengths is getting in the pool, which I think is fantastic, because, for some people, just getting in a pool is a huge challenge). During my next session at the pool, I tested myself to see how far I could go before it felt like I might regret trying to do more, like pushing harder might be problematic, and that turned out to be just over 400m. I don’t think that’s all that bad, considering I haven’t exercised consistently in over a month. So I could do the 400m length swim in September easily; the next goal is 800m but who knows what will happen between now and then…
AUGUST 2023
I continued working on my hydrotherapy and physiotherapy (although I had to take a week off at one point when an ear infection absolutely floored me – pain, deafness, and balance related problems made it all but impossible to walk, let alone do any sort of coordinated exercise). I had my second physiotherapy appointment and that went well; we increased the resistance on some of the exercises and added a few more. My muscles started twitching after I started physio (which initially really freaked me out) before subsiding and that started again with the increase but now we know why it happens, it’s just mildly irritating.
I also tested how far I could swim, about a month after that first experiment, and I managed almost double my original distance and managed it easily; I could’ve gone further had I not run out of time at the pool. I’m really proud of that progress, of the progress I’ve made in both. It’s been so long since I could even do this level of exercise and I can see it translating to the rest of my life, even if it’s slow going.
I wrote about this here but I was also diagnosed with Fibromyalgia. I won’t rehash it, especially since I’m still not sure how I feel about the whole experience, but I don’t want to ignore it, given that one of the main traits of the condition is pain. It’s just that I don’t know how the diagnoses of hEDS, Chronic Fatigue Syndrome, and Fibromyalgia fit together and, after everything, I’m so deeply wary of (and triggered, to various degrees, by) doctors. Anyway. In theory at least, that’s part of the picture.
SEPTEMBER 2023
September was a bit of a wild ride that I could’ve done without on the whole. I had ongoing shoulder and elbow pain (no doubt due to my repetitive hair pulling, excruciating lower back pain for over a week (which almost consistently disrupted my sleep, waking me up every time I tried to turn over, so I was tired and unproductive and frustrated too), and several days of awful knee pain, although that was probably my fault: I think I overworked it one night when doing my hydrotherapy exercises and, had I taken the next day to rest it, it probably would’ve recovered quickly but I ended up going to London (and having an almost meltdown on the street), which I’m sure only made it worse. So that wasn’t great but it wasn’t the worst it’s been so I’m not complaining (much).
I had my second hydrotherapy appointment and the hydrotherapist was both impressed and pleased by my commitment and my progress, which was very nice (and encouraging to hear – sometimes it feels hard to tell whether anything is actually changing so it’s comforting to hear from someone who really knows that I am). We discussed the exercise I’d had to cut because it hurt my arm and she gave me a new one that had the same final result but wouldn’t aggravate my elbow joint. Then she gave me about ten new exercises to work on, which I’m excited to get started on. They’ll be working different parts of my body so it’ll be interesting to see what that feels like and what that means for my stability and stamina (if I’m able to tell). I don’t get any more appointments so hopefully these two exercises will keep me going, at least for the foreseeable future. Given my history, I wouldn’t be surprised if I was back at some point with a different problem that needs support; my hEDS is just the gift that keeps on giving. During the rest of my pool time, I’ve also managed to swim a kilometre and do it pretty easily. I thought a lot about the charity swim I’d been planning to do and eventually decided that, instead of the one I’d originally planned to do, I’d rather do one for Mind, for World Mental Health Day. That would be a really meaningful way to celebrate my progress and do something that helps a cause really close to my heart, especially since I can’t do the more traditional charity runs.
I also had another physiotherapy session and my physiotherapist was also really pleased with how I was doing; she commented on it the second I walked into the room, that I was standing better. As I said, I find it really hard to tell if things are changing so the fact that she could see it that immediately was good (and interesting) to hear. We talked about the pain in my shoulder and elbow and she massaged both, which felt amazing; having felt both of the joints, she said she thought I probably had Bursitis in my shoulder and Tendonitis in my elbow. We went through my exercises and she gave me a new exercise in place of one that was hurting my elbow. She also gave me a couple that would strengthen my shoulder and elbow. I started doing them straight away and I could definitely feel them working!
The only other things of note, I guess, are that, one, I had all of the blood tests done that the doctor (the man who’d diagnosed me with Fibromyalgia) had requested and, two, I had my COVID jab (my fourth vaccination, I think), which had my arm hurting for several days. I had to slow down on the physiotherapy (less so the hydrotherapy) but it wasn’t long before I was back to my normal routine.
OCTOBER 2023
I started October, focussed on swimming in order to do my 5km for Mind: the plan was to swim 1km per swim over the course of the week leading up to World Mental Health Day. And then, suddenly, it was time to do the thing. After the work I’d put in, it actually wasn’t too difficult (although I gratefully took some time to rest afterwards) and I really enjoyed it. And family, friends, colleagues, and strangers generously donated over £600! I’d like to do another one at some point but I don’t want to push myself too hard and I really don’t want to take advantage of my community by repeatedly asking them to donate when the cost of living crisis is hitting everyone really hard. So I’ll choose my event and time of year carefully.
As much as I loved the swimming, I had really missed my hydrotherapy exercises, which I’d had to neglect to build up my stamina and then get the 5km done in five different swims. So it was really nice to get back to them and build in the new exercises I’d gotten from the hydrotherapist. I started feeling them in my core straight away, which was very satisfying: it’s proof that the exercises are working the muscles they’re supposed to be.
NOVEMBER 2023
I continued with my physiotherapy and hydrotherapy, although pain in my hip did make it hard and I had to reduce the amount of exercises I was doing. But I did finally get some compression socks to help with my POTS and I definitely felt the difference when standing or walking. They’re not life-changing but I’ll take anything I can get.
Otherwise, things have been okay, although I did fall down while walking along the South Bank in London. It’s all concrete so it was a pretty hard fall but, at this point, I’ve learned how to fall so that it doesn’t do much damage or hurt too much; usually I just feel a bit shaken up. I was with family and several people came over so I was well checked over but I was fine.
DECEMBER 2023
I was having serious pain in my back, on and off throughout the month, which did limit my ability to exercise – and to just move at all. The exhaustion of being in pain made moving my body hard too; it wasn’t a fun time. Between that and Christmas, New Year, and the associated family commitments, I ended up accidentally taking a couple of weeks off anyway.
JANUARY 2024
In the new year, I slowly got back to my swimming, hydrotherapy, and physiotherapy – with an updated routine. I also started to do a bit of indoor cycling, although that was a lot harder. But it’s all, hopefully, going to help with building up my strength and stamina and stability. It did all became much harder work when I changed the medication I take for POTS, switching from Propranolol to Ivabradine because all of my symptoms got worse: I was constantly out of breath and shaky, unsteady and exhausted. It was a rough changeover. I also fell down while in London again. This time was on grass so it really wasn’t a big deal physically: it didn’t hurt at all but I do always feel shaken up, like my skeleton has been rattled around inside my body. It also makes me feel less secure, less in control of my body, which isn’t a nice feeling.
I was still struggling with pain in my back, as well as pain in my hips. Oh, and my elbows. It stopped me from doing my exercises on and off for several weeks, which was frustrating. I’ve told both my doctor and my physiotherapist but no news yet on whether there’s a problem – other than general chronic pain – and what to do about it.
FEBRUARY 2024
The back pain only got worse and was dramatically limiting my exercises as well as my general movement; it was also waking me up at night. I was almost constantly on the only painkillers that seem to make any difference but I can only take those for a few days at a time before I have to take a break. That really sucks because then I undo all of the good – all of the recovery – that the time on painkillers has allowed me to do. So it’s a never ending cycle without any progress. The physiotherapy and hydrotherapy that I did manage to do were really hard and not enjoyable at all.
So it’s been a year of rough ups and downs, steps back and forward and back again. I’ve had some more support this year but I feel like the pain has been worse and consistently so, particularly in my back. I don’t really know what to do at this point but nothing seems to help it. I was hoping things would be better by now (especially because I want to really be able to enjoy the Taylor Swift concerts coming up) but they feel worse, at least to me, than they did at the beginning of the year.
Grateful 2023
Posted on December 25, 2023
TW: Mentions of depression and suicidal thoughts.
This has been a fucking hard year and there were multiple moments when I wasn’t sure I’d make it to this point; I’m not convinced I’m glad that I have. My anxiety and depression and chronic suicidal thoughts have been doing their best to swallow me whole; several people have suggested that I’m in autistic burnout and I wouldn’t be surprised but I don’t know how to be sure of that with the depression and CPTSD in play. I’m just putting one foot in front of the other, even when I’m not really sure why.
It’s somewhat confusing to still recognise the good things and be grateful for them in amongst all of that. While I never thought depression and suicidal ideation were simple, I never would’ve imagined that they could be this confusing and conflicted. But that’s a train of thought and discussion for another time. For now, these are some of the things I’ve felt grateful for this year…
Mum – I don’t know what else I can say about my Mum that I haven’t already said in my previous Grateful posts (2017, 2018, 2019, 2020, 2021, 2022) but, holy shit, am I grateful for her. Something I’ve thought a lot about over the course of the year is how she always seems to take things in stride. I know it’s not that simple: she’s human and so, of course, she has feelings about everything that happens but the way she handles things with such openness and grace blows me away.
Family and friends – Despite how hard this year has been and how desperately I’ve wanted to just hide away, I’ve managed to spend a surprising amount of time with my family and friends: over Zoom, at music events, at each others homes, even abroad. I honestly don’t know how I got so lucky to find and keep the friends I have but I am so deeply, deeply grateful. I look back at all of the bad things that have happened to me and I find that can’t hate them completely because, if they hadn’t, I wouldn’t have met and become friends with the people I have.
The cats – My gorgeous pride of cats. I love them all so dearly. We’ve had some health scares this year, which have been very scary but, fortunately, everyone has recovered and we’re celebrating Christmas as a healthy family. Izzy has thrown a spanner in the works to a certain degree and the peace of the house has been disturbed dramatically; we’re still finding a new normal and all of these new relationships are still evolving. On the whole, the cats are still avoiding Izzy because she gets so overexcited; she just wants to play but often, that either scares them or they don’t understand and so they take a swipe at her. It’s slow going and although progress is being made, I miss the cats being around and struggle with the frustration of just wanting everything to be okay and peaceful right now. I love them and I don’t like not seeing them as much.
My time and friends in Nashville – My trip to Nashville this year was a serious emotional rollercoaster. There was a school shooting in the city on the first full day we were there; I saw some of the most amazing Tin Pan South shows I’ve ever seen; I became a Madeline Edwards fan; I saw some of my lovely friends; I hung out with new friends; we weathered the edge of a tornado (and had a little party in the motel room we were sheltering in; I got to go to Song Suffragettes’ 9th anniversary show and catch up with the lovely Natalie Hemby; I struggled with some serious chronic pain… It was a lot to take in, a lot to process. It was a really tough trip but the good moments were really good and I am grateful for those.
My therapist (and the dogs that joined our sessions) – It’s been just over a year since I started seeing my new therapist and, if I’m honest, I’m still getting used to her and all the little differences. I saw my previous therapist for eight years and the loss of her from my life was a trauma so it’s not surprising to me that it’s been a really difficult adjustment; I still miss her and our sessions. My new therapist is good and I really like her and we’ve had some really productive sessions but it’s been a very different scenario: my mental health has never been so bad, the worst stuff so close to the surface. That makes therapy really fucking hard. It makes me feel triggered; it makes me feel like a frayed nerve; it makes me feel like I can’t breathe. It’s exhausting. But I know that nothing will change if I don’t go. Part of my experience of depression means that I don’t always want things to change but, as I said earlier, it’s such a confusing, messy, complicated well of feelings that it’s hard to articulate and this certainly isn’t the post to get into it, but it does provide some context as to why therapy is so hard. I can’t seem to clearly explain why I’m grateful for therapy and for my therapist, not with my headspace being the way it is right now, bit I know that I am. Sometimes I think that has to be enough.
The puppies – Over the summer, I got to spend a solid amount of time with a litter of four Pomchi puppies and it was glorious. One of them in particular, the only girl who was nicknamed ‘Skye,’ took to me straight away: it was like she saw me and went, “You. You’re my person.” It was adorable and I loved every second that I got to spend with her. I hadn’t thought I was ready to bond with another dog but Skye showed me that I was (and honestly, the name ‘Skye’ just felt like a sign – one of my biggest special interest characters, Daisy Johnson, having chosen that name for herself before she discovered who she was, who she was supposed to be) and it was such a joy. And then my heart was broken when I wasn’t able to keep her. I was devastated and the pain of it really shook me. I worried about her endlessly and although that has faded over time, it still hits me now and then; I hope she’s safe and happy and loved. And even though it ended in utter heartbreak and a lot of bad feeling, I wouldn’t take it back; it was a really special experience and showed me that I was ready to have a dog in my life again and ultimately lead to Izzy.
Writing songs again – Songwriting has been a difficult for a while now, as it usually is when my depression gets bad (and it’s been the worst it’s ever been). It feels like my creative brain goes into hibernation. Since I started taking Phenelzine again in March, things have gotten better in that regard. I’ve been writing again but it doesn’t feel as fast or as easy as it used to; like it takes actual physical effort to make my brain work when it used to come really easily. So it’s definitely not perfect but I’ve written some songs I’m really proud of and I’m grateful for that.
Getting to reunite with my friends from university – In the Spring, I went to Germany for the wedding of two of my friends and although there lots of stressful aspects to the week away, there were some truly joyful moments too and one of them was seeing some of my wonderful friends. Because we’re scattered around the world, we don’t often get to see each other and we rarely get to see each other altogether and, with COVID of course, it’s been an even longer time than planned so that was really special. It was really emotional too, more so than I’d expected, but then it was a very emotional week.
There’s five of us buried in this huddle.
Acceptance into the Service Dog program – A few years ago, we applied for the Autism service dog program but they didn’t have space for me. This year we applied again and I’ve been accepted! The process from being accepted to actually getting a dog is a long one but that’s okay: it gives me time to get used to it and to learn everything I need to know, with the assurance that support is coming. I’ve met quite a few people who are part of the organisation and they’ve all been so lovely and supportive and warm so I feel like I’m in good hands. I have my anxieties about it – it’s a big responsibility to take on a dog, particularly a specially trained one, and I’m aware that, by having one, I’m representing the organisation and, to a certain degree, disability and neurodivergence – but I think it would naïve and irresponsible not to. So I’m doing my best to prepare and to get into a healthy, balanced headspace about it.
Breathing Room – After years of loving the work known as ‘Breathing Room’ by Anna Berry, I finally got to see it. First in London and then in Croydon. Finally seeing it in real life was magical; it was utterly breathtaking. During each visit, I spent ages just sitting inside it, watching the cones flutter and listening to the gentle creak of the machinery. It was so calming; I could’ve sat there forever. And it had my mind spinning with new ideas for songs, both specifically about the piece and for other songs. I loved that. Both times, I had to all but be dragged out.
The London experience was also incredibly special because I got to help construct it before it opened to the public. It was a viciously hot, airless day (which resulted in a very stupid-looking sunburn, which unfortunately didn’t fade for months) and even with the gloves, I got some pretty nasty splinters that had my fingers stinging for days but I loved every second of it. I loved the repetitive movement, the soothing count, the intense concentration that had the rest of the world fading to nothing. I’d been in excruciating pain and I did struggle with my back during the session but I would’ve happily kept going; I only left because I had a prior commitment. I loved it and it was a really special thing to get to do. I also, by some magical serendipity, got to meet Anna herself and talk with her briefly about my love for the project and the idea of writing a song about it. She was really lovely and it was a very cool cherry on top to the day.
Discovering Maisie Peters – I’ve listened to Maisie a little, on and off, over the years but I think I just felt like I never quite had the brain space to really get into her music. But then I heard ‘Lost The Breakup’ and I was completely hooked. I played it on repeat until The Good Witch came out and then I was just obsessed; I didn’t listen to anything else for weeks and even when I did start listening to other stuff, I still often returned to it. I can’t quite explain what was so magical about it or why it resonated with me so strongly but it really did and I’m still completely obsessed with Maisie’s songwriting; I could talk about it for hours. I’d love to write with her. I also got to see her twice on tour and they were both really special shows: I saw her in Bristol on Halloween at the smallest venue of the tour and I saw her headline at Wembley, the biggest venue of the tour and a real milestone, at the end of the UK leg. She’s a fantastic performer and I absolutely loved the shows. I was also lucky enough to go to the VIP pre-show acoustic sessions and those were really, really special. I have a Week In My Life post half done about that week that I hope to get up soon where I talk more about that so I’ll come back and link it here – it was an exhausting week that took a long time to recover from but it was absolutely, 100% worth it. I saw her perform at the Communion Xmas Party too and got to talk to her briefly afterwards too, which was really lovely (her keys player, Tina, too). It was definitely my Maisie Peters season and long may it continue; I’m so glad to have her music in my life.
Listening to The Good Witch, making bracelets for the tour, dressing Izzy up as the song, ‘BSC,’ Maisie’s acoustic set in Bristol, the Halloween stop of The Good Witch Tour, the acoustic set at Wembley Arena, Maisie’s sold out show at Wembley Arena, Maisie performing at the Communion Xmas Party in London, and meeting her after she performed.
Getting a TENS machine – Given how bad my chronic pain has been this year, getting a TENS machine was a revelation. It has been so helpful and I’m so very grateful to have a way to reduce my pain when it’s really bad. I don’t know how I didn’t come across it sooner but I’m so thankful for the recommendation from my GP (who is an actual miracle worker).
Meeting Amanda Tapping at LFCC 2023 – Amanda Tapping is one of my favourite people in the world and has been since I was about fourteen. She’s played some incredible roles that have inspired me deeply and she is a truly wonderful human being. I met her several years ago and although I was almost paralysed by anxiety, she was so kind and open and it was a really special experience. This year she started doing livestreams with The Companion and it was so, so nice to see her again, regardless of the fact that she couldn’t see me. The livestream was great and I looked forward to the promised future ones. Then, in the summer, I went to my first Comic Con and got to meet her again in person. We had such a lovely conversation – as did she and my Mum, who was with me as my disability support person – and it’s a memory that I will always hold close and keep safe; it was a very special experience. And then, my third Amanda Tapping moment of the year was the second livestream, which was great on its own, but I also had a ‘backstage’ ticket and I was able to talk to her briefly afterwards. She’s so open to big, honest, vulnerable conversations and it feels like she really sees you and hears you when you talk and that’s such a powerful feeling; I remember thinking about that after I met her the first time and it was exactly the same this time. She, and the characters she’s played, have been a constant source of inspiration and strength for me and stumbling across her all those years ago was such a fluke but, my god, I’m so grateful I did.
Getting The ERAS Tour Tickets – Even though, it was incredibly, sickeningly stressful (and caused a fair amount of ableism-based trauma), I am very grateful to have gotten tickets to The Eras Tour in the summer – and not only one but multiple times, since several friends and groups of friends wanted to go and wanted to go with me. That felt very special and I’m both grateful that we were able to get the tickets and that I have been able to afford it, having been saving since The reputation Tour ended. I have a very complicated relationship with the future and with looking ahead but it was a huge relief to know that I wouldn’t have to watch the every show happening without being there even once. So I’m grateful for that. And, as always, I’m just grateful for Taylor herself: for her music, for being a person I can look up to, and for the inspiration and opportunities she has given me.
The Disability-Focussed Writing Workshop run by Sick Stories – I discovered this online workshop on Eventbrite and from the first one I attended, I had an absolute blast. Sophie, the host, is absolutely lovely and the prompts always led me down interesting rabbit roles. The first prompt Sophie suggested resulted in an idea for a novel that I would love to write at some point, my love of writing fiction returning that immediately. The fact that it was disability-focussed, along with Sophie’s excellent hosting, made it feel like a really safe and fun place to explore and share ideas that might’ve otherwise felt too personal and vulnerable, leaving all of the amazing pieces of writing I heard unwritten. I love a lot of the stuff I wrote in those sessions and although I don’t yet have anything to do with them, I hope that I will at some point find a way to share them.
Discovering Juneberry Red Bull – Among my family and friends, my Red Bull consumption is somewhat legendary, despite the fact that it seems to give my no caffeine hit whatsoever (I think I’m still living in denial that one day it will start helping again). But it had kind of waned… until I tried the new summer flavours. The other three didn’t do anything for me but this one has me in a chokehold: I love it so much. I would drink it all day if it wasn’t as unhealthy as Red Bull obviously is. But it’s a nice little treat that I’m very pleased they came up with.
Being able to afford a new laptop when my old one died – My laptop was dying a slow and painful death and, given that I use it for most of my work, that was a very stressful position to be in. But, thanks primarily to disability benefit, I was able to buy a new one and while that was obviously great for work reasons, it’s the first time I’ve had a brand new laptop in a long time so that was very exciting. I love shiny, new gadgets and, since they’re usually very expensive, I don’t get to do the whole “oh my god, a shiny, new gadget!” thing very often.
Nimona – Watching the film, Nimona, was a really emotional moment for me. I loved the story and the world and the animation style and the humour but the character of Nimona really resonated with me. I really related to her and saw a lot of myself in her: her feelings of otherness, her self loathing, her masking – there were so many parallels to being autistic. Seeing that was very moving. And I really, really related to her in her ‘monster’ form. *SPOILERS* The scene below is constantly on my mind and that scream has me in tears every single time: that is what it sounds like in my head, in my soul. That is what it feels like to be me. Being able to point at that and say to someone, “That’s how it feels,” has been so emotional. It’s hard to describe but I’m so, so grateful to have this film. It might mean more to me than any other film, specifically because of this sequence.
Swimming, hydrotherapy, and starting physiotherapy – For most of the year, I’ve kept to a pretty solid schedule with my swimming and hydrotherapy and then, halfway through the year, I met with an amazing physiotherapist and have been pretty consistently working at that too. Having now worked with both a hydrotherapist and physiotherapist who really understand hEDS, I can say with absolute confidence that it is a completely different experience; I’ve worked with good people before but that lack of understanding has always been a major obstacle and I’d find myself burning out and giving up. I’ve always loved to swim but I’ve found that I can really love hydrotherapy and physiotherapy (although I have had some periods of pain so bad that I had to take a break until it faded). We’ve found two really lovely pools to swim in, which makes it even more enjoyable, and I’ve made some real physical improvements. That’s been kind of mind blowing – to actually see that happen. And to the point where I was able to swim 5km for Mind! But more on that in a minute.
Izzy – I still can’t quite believe that I got a puppy this year, that I actually have a puppy now. That’s definitely not something I expected at the beginning of the year; it was probably the last thing I expected. But here we are and I’m madly in love with her. Izzy is a golden Pomchi (half Pomeranian half Chihuahua) and she’s utterly gorgeous: she’s soft and warm and snuggly and amazingly smart. The bond we’re building is already so strong and so special and that means so much to me, even though it’s kicked up some hard stuff. But I want nothing more to love and protect her and she seems to feel the same, guarding me at almost all times and trying to lick away my tears when I’m sad and looking to me when she’s distressed. My relationship with Lucky was incredibly special and always will be but, just as I learned after my first cat was put too sleep and we then got Lucy, I can love another animal and not feeling like the new relationship is replacing the old one. This relationship is new and special in its own ways and I feel lucky and honoured to have a puppy to pour all of that love into.
Getting to fundraise for Mind – Getting to fundraise for Mind felt really, really special, not just because we managed to raise so much more money than I’d expected (over £600 compared to my goal of £200) which was amazing, but because I was finally physically capable of doing it. I swam 5km for Mind, 1km a night over seven nights, partly due to managing my hEDS and partly do the logistics of pool time, but I was really proud of finding a way to make it work. I was exhausted and sore afterwards but it was absolutely worth it. I was so impressed and so touched by the generosity of everyone who donated it and I was so proud of myself for committing to it and competing it. I look forward to doing something similar at some point.
Spending my birthday with horses – My birthdays have been a source of stress for quite a long time now so I’ve taken to either ignoring it completely or trying to find something un-birthday-like but still special to do. And this year, I found myself going on a wellbeing course that centred around horses. I’ve always loved horses so, while the confidence building stuff was hard, it was so nice to spend time with these gorgeous animals again. It was a really cool, interesting way to spend the day.
The excellent books I’ve read this year – I worked really hard to get back into reading this year and I read a lot of really good books. The ones that have most moved and inspired me are Trista Mateer’s poetry, Blythe Baird’s poetry, The Anthropocene Reviewed by John Green, and Tomorrow and Tomorrow and Tomorrow by Gabrielle Zevin. All of these books had a really profound effect on me and they’ve all become so special, each a little piece of my personal creative and artistic mosaic. I don’t know why I picked them up when I did but I’m so thankful that I did.
A year of Duolingo – It’s hard to believe that I’ve now been learning Dutch for over a year. It’s hard to believe how far I’ve come. But I have and I have. It’s so strange to me: I hated learning languages at school but I’ve loved learning Dutch. There are plenty of obvious reasons for why I hated it at school but they’re not really worth dwelling on at this point but I had no idea when I started learning through Duolingo just how much I would love it, how restful I’d find it, how much fun I’d have. I had no idea that learning a language could be such an enjoyable experience – could be enjoyable at all – after my school experiences and it’s even inspired me to think about other languages. But one thing at a time. I love learning Dutch and I feel no need to change the way I’m currently doing things. I don’t know why I thought to download the app that day but I’m really glad I did and I’m proud of myself for opening it and practicing every day since.
As I’ve repeatedly said, to call my feelings a mess is the understatement of the year. I was re-reading my post from last year and I don’t know if I can describe gratitude amidst depression and suicidal thoughts any better than I did then: “When I feel like this, like I’m drowning in my depression with these near constant suicidal thoughts, things to be grateful for feel like a double edged sword. Sometimes they’re things that make me feel like I can keep hanging on, even if just for a little bit longer, and sometimes they feel like weights tied to my ankles, keeping me here when I desperately don’t want to be and I have to admit I resent them for that. So it’s anything but simple. It’s good and bad and hard and confusing; I can feel differently, ten different times in a day sometimes. But these are the objectively good things in my life and I can recognise that. I wanted to honour them for that.”
November 2023 in Photos
Posted on November 30, 2023
I really enjoyed doing the photo challenge in September so I couldn’t resist doing another one. It’s been a weird month though; I don’t know if I would’ve committed to it had I known what the month would hold, how exhausted and burned out I’d feel, but once I’d decided to do it, I had to follow through. Between how tired and how focussed on my current writing I’ve been, there haven’t been many opportunities to take unique or exciting photos but I’ve done my best. So here is my November 2023 in photos, as prompted by the Planner & Paper photo challenge on Instagram, Life in Pockets…
1. Thankful for…
How could I not be thankful for this gorgeous little bean? She’s soft and warm and snuggly and she adores me as much as I adore her.
2. Home Decor
My favourite room in my house is the living room and that is largely due to the fairy lights that we hung around the room a few years ago. They give the room a soft, warm glow and it always feel inviting and safe. Sometimes I put them on during the day, regardless of the light level, because it just gives me a little boost to look at them.
3. Selfie
I rarely take selfies anymore, especially alone. I just really don’t like looking at myself if I’m completely honest. But I have taken a few while holding Izzy, if she’s doing something particularly cute, like she did in this moment: falling asleep on my chest and tucking her face into my neck. It was too adorable not to take a photo of.
6. Home Project
I don’t have a home project exactly but my current self-care-craft-project-sort-of-thing is making bracelets, inspired by The Eras Tour. There’s just something really soothing about the repetitive motion, about making something – even something this simple – with my hands.
8. While I’m At Work
If I flip down the lid of my laptop where it sits on my little sofa table, this is my view: Izzy curled up on or against me, a cat or two on various soft surfaces, and sometimes my Mum working similarly. It’s a very companionable, pleasant way to work.
9. Something Not So Fun
After several days of feeling pretty unwell, I took a COVID test. I’d thought it was just exhaustion and over-exertion after a very intense week with a lot of travel and late nights but then I developed a sore throat so I took a test straight away. I don’t love the sensations involved with taking a test – I’m pretty used to them at this point – but then the first test came back void and I had to do it all again; I was not impressed by that and neither were my sore throat and sinuses. It was, of course, worth it: I was negative and while I still had to be careful – I was still sick after all – I was relieved that it wasn’t anything as serious as COVID.
10. Out The Window
Okay, I’m cheating a bit because I didn’t take this photo on the tenth but it is honestly the greatest thing I’ve ever seen outside of my house. How could I not share it?! Not only is the name hilarious for a waste clearance company, but the tag followed by the phone numbers is so fucking funny. Apparently The Lord of the Rings franchise have sent them cease and desist letters and they’re now in litigation: they have to change the colour if they want to keep everything else. That seems ridiculously petty – and pretty pathetic, lacking all sense of humour – for such a wealthy franchise. I’m glad they’re getting to keep everything but the colour because it genuinely made my day.
12. Your Choice!
We had our first evening at puppy school! We met some gorgeous puppies (I’m pretty sure Izzy is still the smallest though) and learned some basic skills, including settling on a blanket, recall training, and the beginnings of walking on a lead. Izzy was picking it up very quickly but she was definitely ready to go home at the end: concentrating for that long was understandably hard for a young puppy and she was quite clearly getting overwhelmed by all of the other dogs. She’s really good at meeting new people but meeting dogs makes her anxious, which doesn’t really surprise me since almost all of them are bigger than her. Anyway, she did well and we have some exercises to practice before next week’s class.
15. A Hug
That day I was working at home, alone, all day so there was no one to hug. Well, no people. Izzy was very snuggly and, as afternoon turned into evening, she climbed on top of me – while I was sitting at my laptop – and curled up on my shoulder. I ended up sliding down to accommodate her and she fell asleep like that. It was so cute that I couldn’t help myself: I stopped working and just stroked her, almost drifting off myself.
17. Your Choice!
I had a session with Richard – Richard Marc, one of my best friends and favourite cowriters, as well as my producer – and we worked on some of the songs for my next project. I’m so excited about it and so keen to get it out in the world; I’m trying my hardest not to let my passion for it burn me out before that point BUT I’M JUST SO EXCITED.
18. Comfy
I feel so lucky that Izzy and I have such a strong, close bond and that she wants to spend so much time as close to me as possible. It’s so cute and I always feel better for it. An extra joy of it is that I catch every adorable or ridiculous position that she adopts, like this snuggle with her toy elephant, Nellie.
21. Preparation
While I love the flexibility of my bullet journal – how I can customise it to exactly what I want or need – drawing it out every month can get a bit tedious. And it doesn’t help that Izzy keeps stealing my pens and then chewing them to death. But it can be quite meditative, if I haven’t left it to the absolute last minute that is.
23. Thankful
The night before, I played a set at a local gig and I had such a good time. As anxious as I can get beforehand and despite how much pain I tend to find myself in afterwards, I love performing so much. I love playing the songs I’ve written – songs that I love so deeply – and sharing them with new people. And it’s so special when people reach out to tell me why they connect to them. Even though I often struggle with not being further along the path than I am, I’m so thankful that I get to do this at all. There’s nothing I love more.
24. Family
Given that my actual family is somewhat scattered at the moment, I thought I’d post about my cats, my gorgeous family of cats. I haven’t seen as much of them as usual because all but Lucy are keeping their distance, still wary of Izzy; Lucy isn’t phased but then she has already bent Izzy to her will. The others are getting bolder but it’s a slow process. At this time of year, they’d usually be draped around the living room so I am really missing them, just having them around. So this little moment with all of them was very nice.
25. Sleep
God, I’ve been so tired this month. I’ve been falling asleep constantly, regardless of where I’m sitting or what I’m doing (now if only I could sleep properly at night). And Izzy, the little sweetheart that she is, is always desperate to snuggle up, to get as close as possible. Hence these pictures. And while they’re very cute, she does actually help me sleep; soft and warm and breathing steadily, she’s better than any weighted blanket.
26. Self Care
While going to the pool for a swim and my hydrotherapy exercises is good for my body, it’s also really good for my mental state. I know that a big part of that will be due to the endorphins from the exercise but I do think that there’s more to it: I’ve always loved the feeling of being in the water but it’s also such a relief to be able to move around without pain, something that just feels so glorious and freeing. I think there’s also some self esteem stuff going on, being able to exercise and get stronger after feeling so physically incapable and broken. But now I’m actually getting fitter and stronger, which I feared I would never be able to do without serious discomfort, pain, and distress. So the pool represents a lot of things to me and swimming really lifts my mood.
27. Weather
We’ve had some amazing weather recently, from glorious sunshine to torrential rain. I’ve seen multiple rainbows and several beautiful sunsets. It’s been a stunning November. This was my second favourite sunset, recently at least.
30. Self Care
While spending time with my cats is always good for my soul, it’s particularly special right now: the cats have – unsurprisingly – been avoiding the whirlwind that is Izzy and, since she’s usually with me, I haven’t been seeing them much. Not to snuggle with, at least. But they are getting braver and although Lucy doesn’t take any shit from her, she’s reluctant to get close enough to me to cuddle if Izzy’s around. But there have been a couple of occasions recently – when Izzy has been hanging out with Mum – where Lucy has taken advantage of the moment and curled up with me, which have just been gorgeous. Running my hands through her fur and listening to her purring, I can feel an internal meter filling up.
* Bonus: In The Distance
Up in London, I was walking back along the Southbank and everything was lit up and beautiful. The London Eye usually is, as far as I know but the lights in the trees and between buildings were stunning and there’s different pieces of art and installations everywhere. I love it.
As well as the lights in these pictures, there was a strip of rainbow neon along the bridge and there were lights spelling out ‘PROUD’ underneath, visible to boats and people walking by. I tried to get a picture but I couldn’t get anything unobstructed by various parts of the bridge.
Unsurprisingly, this month’s photos feature Izzy heavily: between all of the time I’ve spent writing, sitting at my laptop with Izzy curled up against me, and the fact that she’s still very young and thus needs a lot of supervision, she’s been a very obvious subject for my photos. I also haven’t done much outside my normal routine this month – having had so much work to do and having felt so tired and burned out – so there haven’t been many exciting opportunities for new and interesting pictures. But, as I said, I tried my best and hopefully the adorable puppy pictures make up for the lack of variation…
Finding Hope 