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.
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…
A(nother) Week In My Life (In Lockdown)
Posted on August 15, 2020
It hasn’t been that long since my last week-in-my-life post but life is so different week to week at the moment that I thought I’d do another one once I started to see how the week was turning out. I thought, if anything, it would be interesting to be able to look back and see how different different periods of time could be during this pandemic and the subsequent lockdown.
The week in this post started on Monday 20th July and ended on Sunday 26th July.
MONDAY
I got up around eight, determined to be productive: do admin, send emails, work on blog posts, and so on. But I quickly discovered that the internet was down for the whole street and so I had to adjust my plans. I went back to my photo library and managed to finish sorting out my photo library: I can’t remember if I’ve mentioned this but when I loaded my photo library onto my new laptop, there were multiple duplicates of every single photo and the only way to be sure that I was getting rid of all of them (and not losing any of the originals) was to go through it manually. It took about two weeks of dedicated work but that morning, I finally finished deleting the duplicates, cutting the library down from 85,000 to 30,000 – no wonder Photos was running so slowly… I wasn’t quite done: I had to finish organising the remaining original photos into albums but it was real progress and that was very satisfying.
Since I was filming the music video for my next single, ‘Back To Life,’ the next day, I’d recoloured my hair a couple of days earlier (it had grown out A LOT) but since my usual dye had been discontinued, I’d had to guess at a new one and I wasn’t super happy with it so with my Mum’s help, we dyed it again, using a much redder dye than the previous one. It still wasn’t quite what I wanted but it was better than before.
I spent the afternoon working on (and finishing!) my next blog post, My Lockdown Favourites, and then, in the evening, I tried on the outfits and jewellery for the video, just to make sure that everything matched and was comfortable enough to move freely in. I avoid weighing myself because of my struggles with food – I don’t believe I have an eating disorder but I have gone through phases of disordered eating so I’m careful to avoid things that trigger that, like keeping a frequent eye on my weight – but I don’t think I’ve gained much, if any, weight during lockdown. My weight fluctuates within a certain range and I’m currently wearing the bigger size of jeans but that did happen pre-lockdown times. So I was relieved that everything was comfortable and that I don’t need to spend money on new clothes.
I was happy with the two different looks and as comfortable with our safety plan as I could be, given that I find just going out incredibly stressful, but I still felt very anxious about making the video. We were shooting early to avoid as many people as possible, would be masked (apart from me when I was on camera), and would be socially distanced, but I was still anxious about being out, about acting relaxed and happy for the upbeat song while feeling so anxious, as well as all the normal anxieties about making music videos and being filmed. So it’s safe to say I was struggling. But if we didn’t shoot the video, we couldn’t move forward with the EP, and I would continue to carry all of that anxiety.
In an attempt to relax a bit before bed, I caught up with one of my parents over FaceTime and watched an episode of The Mentalist with Mum. Then we went to bed early, given that we had to get up pretty early for the video shoot. I don’t know how I’ve managed to come up with three music videos (four shoots in total), all that have involved getting up at vaguely ridiculous hours.
TUESDAY
My alarm was due to go off at six but I woke up at five thirty. That was positively luxurious compared to Richard’s ‘call time,’ since he’d had to leave his house before five (he was catching the first train from London – we’d talked about this a lot before we even started planning but he said he felt safe doing it, otherwise we wouldn’t have gone forward with the filming). But that extra time was good: it gave me some time to settle myself and collect my thoughts.
When my alarm went off, I got up and got showered, made up, and dressed in the first outfit I’d be wearing. I had a bit of breakfast and it was all going really well when, of course, I discovered a problem: a white residue had appeared on the frames of my glasses. It’s happened before but Mum had managed to get rid of it using a general household cleaner but nothing seemed to be working this time. We were supposed to be picking Richard up from the train station but I couldn’t do the video with my glasses looking the way they did (it was really noticeable and would look horrible) and I was rapidly spiralling into a meltdown, which I really couldn’t afford to have if we were going to film the video. In the end, Mum had to go and get Richard while I desperately tried to clean them, using anything and everything I could think of. A combination of googling and just experimenting later, I discovered that a thorough scrubbing with toothpaste was the answer. So, just in case you ever find yourself with the same problem…
PRO TIP: If your glasses develop a white residue on the frames, a good scrubbing with toothpaste will make them look as good as new.
I was just finishing when Mum and Richard got back and we headed straight out to the beach. I’d expected it to be pretty quiet, given that it was eight in the morning and a section of the beach a good distance from Brighton, but it was actually quite busy: there was an almost constant flow of people, most of whom weren’t wearing masks. This only added to my stress, in terms of safety and in terms of filming.
I don’t want to give too much away since this post will go up before the video is released. But we shot footage in three different locations (which included a somewhat awkward outfit change) and got everything we needed. I’d been worried about singing and making eye contact with the camera, something I’ve never done before, but that turned out to be much easier than before. It was hard work though, especially considering I’ve been inside for the last several months and my high level of anxiety. But we got it done and I’m cautiously optimistic about it as a finished video.
Here’s what I posted on Instagram afterwards…
Braved my anxieties to work on something special with the lovely @sandersonphoto today 🌊 (x)
After so much physical exertion (for the last year or so, even standing for extended periods of time can make me feel lightheaded and dizzy), it was a struggle to get back to the car. My whole body hurt, particularly my hip and knee joints and my steps got shorter and shorter. It felt like there was broken glass between the bones at each joint. It was horrible.
Eventually we made it back to the car and then home. We sat socially distanced in the garden for some lunch and then, as I watched Richard attempt to reconnect with the cats, I ended up falling asleep in my chair, completely exhausted by the emotion, the anxiety, and the physical activity. Fortunately Richard understands that this does happen – it’s happened before. I didn’t sleep for long and then we had a good catch up before dropping him back at the station around four. We were both really wiped from the early starts and the shoot.
Home again, I flopped down on the sofa and caught up with my other three parents who were all eager to hear how it had gone. Then me and Mum watched a couple of episodes of The Mentalist, had dinner, and went to bed early.
WEDNESDAY
It was a really tough day because I was in a lot of pain after the shoot the day before. My whole body hurt, every single time I moved, every time I even shifted my weight. It was hideous. No one has managed to explain why I experience this level of pain after ‘normal’ levels of activity and our investigation has been stalled by the pandemic. Hopefully one day we’ll be able to find out, or at least find some solid ways of managing it so that I don’t feel so limited (I think the lack of exercise – swimming is the only form of exercise that I can do without pain – hasn’t helped).
I’d planned to have a very gentle day anyway, knowing I’d be tired, so I settled in to watch Absentia Season 3. I knew from watching the first two seasons that I would get so absorbed that I wouldn’t want to stop until I finished it so I dedicated the day to binging the whole thing. I’m finding this to be a really good form of escapism at the moment, especially because I don’t have the concentration to do anything but watch it. Anyway, it was really good and I really, really enjoyed it. Having only started it a month or so ago, it’s already one of my favourite shows. I think the first season is my favourite but I’ve loved all of them and I love Emily Byrne (played by Stana Katic). She’s such an interesting character with such a complex history that I could just watch endless episodes of her. It’s definitely a show that I’ll watch over and over again.
This is the trailer for Season 1 even though I was watching Season 3 – I just don’t want to spoil the show for anyone.
I was so overwhelmed when I finished it that all I could really do was sit and absorb it. But eventually my brain started working again and I had a quick scroll through social media (I haven’t been spending much time on it recently but I do try to check in every now and then so that I’m update to date with what and how my friends are doing) before doing a bit of work, despite my dedication to a day of relaxation. A Dutch journalism student had reached out to me, asking if he could interview me as a new artist dealing with the pandemic. I’d been happy to help and he’d sent me a series of questions that I’d been thinking about so I pulled them up and wrote out my answers before sending the document back to him.
I FaceTimed with one of my parents (it’s hilarious – we talk more now than we did pre-pandemic even though we’re currently doing less and therefore have less to talk about, leading to some pretty bizarre conversations) and then me and Mum had dinner with The Mentalist. And after taking some time to digest, she gave me a massage (I think I’ve mentioned previously that she used to be a massage therapist) to help with all the pain I was in. It wasn’t exactly comfortable but I think it helped in the long run.
Lying on the carpet post massage, I was so relaxed that it was very hard to get up. I didn’t end up going to bed until around eleven.
THURSDAY
Despite the less than early night, I woke up at six and couldn’t go back to sleep. I was still tired but I enjoyed the cool and quiet of the early morning. It’s the time of day when I feel most calm, I think.
I stayed curled up in bed but I got to work, answering all of my outstanding messages (and there were A LOT of them). Over the last month or so, I’ve found that taking a couple of days away from social media can be really good for my mental health but then almost all of my socialisation with my friends is through social media so I’ve been working at finding a comfortable and healthy balance. The messages do pile up every now and then though so I’m not there yet. But I’m trying.
That done (and it felt like a real achievement considering how many messages there were), I got up and went downstairs to feed the cats. I was still in pain but it was mainly just in my joints and where the body bends, rather than absolutely everywhere like it had been the day before. So that was progress.
I spent the morning updating my bullet journal and working on various blog posts with Friends on the TV with volume turned down low (background noise helps me work and it seems to be the only thing that doesn’t distract me). I was just getting on with that when I got a handful of notifications from Taylor Swift’s social media accounts, announcing that she was releasing a new album at midnight (or 5am for me in the UK).
My brain basically short-circuited. It was such a shock – a good one, yes – but a shock nonetheless. I was incredibly excited but I also had this weird mix of adrenaline and anxiety rushing through my system; I think the only way I can describe it is that it’s like when my plans suddenly get derailed and I’m left scrambling to try and figure out what the new plan is. It’s not a comfortable feeling. Having said that, I don’t want to come across as negative because I was genuinely immensely excited but sudden changes are a lot to handle when you’re autistic so I was dealing with a lot of overwhelming emotions.
Given this news, my concentration was shot for the rest of the day. Usually, we have a lot longer to wait between announcement and release so the anticipation builds over months but this time, it felt like it was all compressed into less than a day. It took hours to get back into a headspace that wasn’t just ‘OH MY GOD! OH MY GOD! TAYLOR SWIFT IS RELEASING A NEW ALBUM AND WE’LL HAVE IT IN LESS THAN TWENTY FOUR HOURS!’ and even then, the thought would leap up out of nowhere and smack me in the face, derailing my thought process. So it wasn’t the most productive day ever.
I spent (or tried to at least) the rest of the day trying to catch up with my diary so that I could immediately write down my thoughts on the new album the next day. I didn’t quite make it but I got close enough that I would still be writing about it on its release day.
Something that I started doing with the ‘Red’ album was predicting which songs I would like based on the titles. Obviously that’s not much to go on and there’s no logic to it really but it’s a fun exercise. My guesses for ‘folklore’ were ‘the last great american dynasty,’ ‘exile’ (I mean, a collaboration with Bon Iver?!), ‘my tears ricochet,’ ‘seven,’ ‘august,’ ‘this is me trying,’ and ‘epiphany.’ So I wrote those down, set multiple alarms to wake me up for my traditional 5am first listen, and went to bed early.
FRIDAY
My alarm went off at 4.45am and I flipped through various apps on my phone, just trying to wake myself up for the 5am release. But when the time came around, the album wasn’t available on iTunes. Fortunately lyric videos for each song had been uploaded to YouTube so I watched those according to the track listing. It’s always really important to me to listen to a new album in order because that’s a creative decision the artist made when they put it together. I often continue to listen to albums like that (unless I’m in a specific mood and need the validation that songs of a similar emotion provide).
As I listened, I noted down my thoughts about each track. I love how our relationships to songs change over time and as we discover all the layers within them so I always find it really interesting to look back and see what my original thoughts were for comparison. I don’t know if anyone cares but I’m going to stick them in here because I love the album and loved it from the first listen.
- the 1 – I instantly loved the nostalgic feel, created by the warm and gentle production. It had gorgeous lyrics with beautiful imagery and the melody felt easy and natural; I was singing along by the end of my first listen. It was instantly a favourite.
- cardigan – This one felt darker and a little more jaded with slightly more chaotic production. But it still had a warmth to it; it reminded me of a fire on a winter evening. The lyrics were detailed with more beautiful imagery.
- the last great american dynasty – This one has such an expansive, detailed story and I just loved the idea of this truly shameless woman but I didn’t personally connect to the song until it flipped and the story turned personal and then I was grinning like an idiot. The production felt very fitting with the story being told and again, the detail (and wide vocabulary) made for a great song.
- exile feat. Bon Iver – This is the collaboration I never knew to hope for. Bon Iver has a gorgeous voice and I just loved the two opposite sides, telling their story both in concert and over each other in a way that only intensified an already incredibly emotive song. It was an instant favourite and had me sobbing on the first listen. The lyrics were absolutely stunning and while I loved pretty much all of them, I really loved the first and final lines of the main chorus. There was just something about it that hit me square in the chest.
- my tears ricochet – The vocals in this one were particularly gorgeous and the lyrics were gorgeous and rich, kind of reminding me of velvet and stately rooms. The story is a mystery but beautifully detailed and I’m looking forward to listening over and over again until I understand it better. (I have to add that as soon as someone pointed out that it was, or at the very least could be, about the betrayal of Borchetta and sale of her masters, I fell in love it, with the metaphor and the emotion.)
- mirrorball – I instantly loved the guitar sound and I just loved the lyrics, how fragile they were but still so full of hope for love. It had some really beautiful lyrics and somehow, the whole song – lyrics, melody, and production – sounded just like a mirrorball.
- seven – I found this one a bit hard to follow but it had real character and some beautiful lyrics. I also really loved the relationship between the characters in the song.
- august – This one just sounded like a hazy summer day to me and the story was just so clear. The production was full and glorious and again, I loved the relationship between the two characters and the obvious complexity of their relationship, even though we don’t know who they really are or if they’re real at all.
- this is me trying – I was instantly struck by the production: thick and stunning and emotional. And I loved the reverb on the vocal and how it added to the emotion of the song. It was a favourite straight away, with gorgeous lyrics and imagery, and it was so honest and vulnerable in its simplicity. I just wanted to close my eyes and live in it. I found the rhythm of the bridge a little bit jarring but I’m sure I’ll get used to that with more listening. It seemed more real than some of the others. I’m not sure why but some of them just seemed more real.
- illicit affairs – It took me a while to get into this one – I found the verses lyrically beautifully but the rhythms tripped me up a little – but I loved the stripped back-ness of it. I loved the chorus lyrics and I adored the bridge: the pain and the fury in it were just so real, so brutally honest and vulnerable.
- invisible string – I thought this one told a really lovely story with both tongue-in-cheek lyrics and beautifully sincere ones. But I didn’t like something about the production of the vocal, something that made it a little uncomfortable to listen to.
- mad woman – Definitely the biggest oh-my-god of the album. I kind of wanted it to be a huge, relentless wall of sound but I think the calm, beautifully honed steel approach is probably more effective, given the subject matter (another take on Borchetta, Braun, and the sale of her masters). I loved it and loved her refusal to be shamed for being angry. The lyrics were truly awesome and I loved how she went straight for the jugular, all in in an incredibly gratifying demolition.
- epiphany – I found this one hard to listen to because the emotions were so raw but it was beautifully written, a stunning tribute to the people described and their stories. I cried from the first verse until long after the song finished.
- betty – I thought this big, busy story was told really well but I didn’t really connect with the characters. I just ended up getting distracted wondering who the characters were, who the songs were about. The production also wasn’t really a style I love but the key change did make me smile. And hearing her sing, ‘would you tell me to go fuck myself’ made me laugh, even though she’s singing in character.
- peace – This is, I think, one of the most beautiful, vulnerable, honest love songs I’ve ever heard. It reminds me of wedding vows, of all of the promises she’s willing to make but then asking him if they’re enough to outweigh the hard times. She lays everything bare and I think that’s part of what makes the song so special. The production is also simply gorgeous (even though I would’ve loved a big, glittering bridge but I get that that’s not how this genre or style seems to work). It was another real favourite and I was a puddle of tears by the end.
- hoax – This one feels intricately connected to ‘peace’ somehow: a darker but still painfully honest, vulnerable love song. Having said that, I could be completely wrong. I don’t feel like I fully understand it with just one listen because there are just so many lyrics and metaphors and emotions to unpack but I’m looking forward to listening to it over and over again and sharing theories with other fans until I understand it better. But back to the song, the beautiful lyrics are only accentuated by the simple production. It ends the album on a very complex note, which isn’t something she traditionally does.
I’m really looking forward to hearing ‘the lakes’ and seeing how that fits into the album and I’m just really excited to listen to the album over and over and over again, until I know every little detail. Again, because I love it so much (and because I’m a Songwriting Nerd), I’ll probably make a whole post about it at some point once I’ve listened to it more and have a better understanding of the stories. If that’s not your thing then I absolutely won’t be offended if you skip that post.
I bought some merch (the international shipping is atrocious but I’m trying not to beat myself up since I’ve barely spent any money since lockdown began) and spent the morning on Tumblr, reading people’s reactions and theories and analyses of the new songs. This is always one of my favourite parts of a new Taylor album, everyone coming together to peel back all of the layers in each of the songs. It reminds me of this Daisy Johnson quote from Agents of Shield (my favourite TV show): “Usually one person doesn’t have the solution, but a hundred people with one percent of the solution? That will get it done. I think that’s beautiful… pieces solving a puzzle.”
Early afternoon, I had a Zoom session with my therapist. We talked through the week since my last session, discussing the difficulties and how I’d dealt with them. She also let me ramble about Taylor Swift for a little bit because she knows how much I love her and how important her music is to me, both as a person and as a songwriter. For the most part though, we talked about how much I have and still am struggling with the different reactions people have had and are having to the pandemic and lockdown. I’ve never been able to get my head around the way some people have managed to be super motivated and productive during this time while I feel like I can’t move past the fact that we’re in a pandemic, that tens of thousands of people have died, hundreds of thousands of people are mourning, and so on. It’s like this giant roadblock that I just cannot navigate around. Yes, I’ve been able to do bits and pieces here and there but this is always in the middle of my brain, making it impossible to be much more than minimally functional. I don’t think a person is bad or wrong for being able to compartmentalise or manage however they are managing; I just don’t understand how someone actually does it. Usually I can understand how someone might approach a situation differently even if I can’t actually do it myself but right now, I can’t. I wish I did; I wish I knew how to not feel constantly overwhelmed by distress and grief and fear.
By the time we finished, I was really starting to flag; the early start, the emotions of ‘folklore,’ and the difficult discussions in therapy. I was TIRED; I was struggling not to fall asleep on the sofa. I lay there for a while, just processing everything, and when Mum came upstairs to check on me, we ended up watching The Mentalist together while I did some diary writing. My emotions were all over the place and I just needed some gentle time.
Dinner and another episode later, me and Mum got in the car and went for a drive. I always introduce her to new albums on long drives and it’s a tradition we both really love (something we haven’t done since before we went into lockdown). We didn’t have anywhere to drive to so we just decided to drive up to a particular junction on the motorway and back, listening to the album beginning to end. For some reason, it feels like an album that sounds best in the dark, hence why we’d waited until the evening. It was really fun and we both really enjoyed it. Mum’s initial favourites were ‘illicit affairs,’ ‘this is me trying,’ and ‘mad woman.’ After a day of listening to it, my top three were ‘this is me trying,’ ‘mirrorball,’ and ‘exile.’ But I really, really love a lot of them. It’s mostly a case of which ones do I love more or less and which ones do I connect to more or less.
There was a diversion due to roadworks so we ended up getting home pretty late. We were sorting out the cats and getting ready for bed when we came to a decision on something we’ve been discussing for a while: we decided to buy the one thing I wanted for my birthday, a Gretsch hollow body electric guitar. I’ve wanted one for months and it was going to be my birthday present but me and Mum had discussed it and decided to buy it a couple of months early so that I can make the most of it before university starts again in early October (my birthday is at the very end of September). I want to improve my skills and also just play for fun as much as possible before I have to start factoring in university work, in whatever form that takes. We’ve been talking about it for a while now but that evening, we decided to finally stop talking about it and actually do it. It was very exciting and would be arriving in just a few days (the picture below is from when it arrived).
SATURDAY
I woke up feeling tired and unsettled and anxious and it just got stronger and stronger throughout the day. I just felt really overwhelmed by all the things I feel I still need to do before uni starts again, which ironically and frustratingly made it harder to get anything done.
It was a rainy day so the cats spent a lot of time indoors with us, which was a comfort. They’re usually busy playing in the garden so it was nice to have them around. They were all pretty affectionate but Sooty was especially snuggly and I gratefully accepted every invitation to cuddle.
I posted my weekly blog post, My Lockdown Favourites, and then spent most of the day catching up with my diary. It’s so easy to get behind and that causes me such anxiety. I also spent a bit of time at the piano and continued messing around with a couple of song ideas I’ve been working on recently. I’ve been experimenting with writing from the point of view of fictional and historical characters over lockdown and although I find it much harder than writing about my personal experiences, it’s a fun challenge and one that I think is improving my songwriting skills, as well as resulting in some interesting songs. So, all in all, it was an okay day.
In the evening, one of my parents came over for dinner in the garden. We’d also planned to watch Hamilton together but given how stressed and anxious I’d been, we decided to postpone that until next time so that I’d actually be able to enjoy it. I’ve really been looking forward to seeing it so I was grateful for the flexibility; I wanted to be able to really get stuck in and engage with it and I just didn’t feel able to that day. Still, it was really nice to see her in really life and hang out together.
When she left, me and Mum watched a couple of episodes of The Mentalist while I did some diary writing and then we went to bed, far too late as usual. Sleeping badly has got me all twisted up about going to bed so I dread it and put it off and usually end up sleeping worse because of it. It’s a habit I’m trying to break but so far I haven’t done very well. It’s just so easy to get sucked into trying to finish whatever I’m doing.
SUNDAY
I slept restlessly (as is my new normal) and woke up feeling tired and low. But I dragged myself up and me and Mum fed the cats – it really is a two person job with five very eager cats. They’re so cute though and watching them practically inhale their food and then skip out into the garden to play is a good way to start the day.
Mum headed out straight away and drove to our gym since she hasn’t been able to get anyone on the phone. Because of my Chronic Fatigue and the ongoing problems with my joints, weight bearing exercise can be really painful so swimming is really the only serious exercise I can do. I’m really concerned that gyms are opening too early but as they are, I at least wanted to know what the safety precautions are and what my options might be. Our gym has a therapy pool that was always empty first thing in the morning so we would use that but when she returned, she reported that the therapy pool wasn’t an option because they didn’t have enough life guards yet. And when it came to their safety precautions, I just didn’t feel like it was worth the risk. But we’re going to keep talking to them and try to work out an arrangement as a disabled member. So it’s not the end of the road but it was very disappointing and didn’t help my mood.
I was supposed to have a music lesson (via Zoom) but my anxiety was even worse than the day before so, in the end, I cancelled it. Fortunately my teacher is one of my parents and so she understands that if I say I can’t do something, I really can’t. I’d really tried to motivate myself and push through my anxiety but I just felt like I was going to start crying at any moment. It was just too much.
So I curled up on the sofa with the TV on low and continued catching up with my diary. I always get behind when Taylor Swift releases an album because I end up writing so much about it – the lyrics, what I like and what I’d do differently, the production, my overall thoughts – and sticking in interesting analyses from Tumblr. I’m always amazed at how quickly some people are able to analyse a song and see all the layers while I’m still overwhelmed by the amount of layers and all the emotions the songs evoke.
I also did a bit more work organising my photo library but I hadn’t got very far before I was interrupted (very pleasantly) by one of my parents dropping in to say hello. She hadn’t planned on staying long but then we got talking about ‘folklore.’ She’s a huge music nerd so she’s always interested to know what I’m listening to. I played her a couple of the songs and that turned into a full album listening party, which was really fun, although I’m always a little anxious about playing her music that’s special to me because she can have really strong opinions. But she was really into it (she particularly liked ‘mad woman’) and asked me to share it with her so she could listen to it some more. So that was very cool.
I ended the day having dinner and watching The Mentalist with Mum (we are both complete saps when it comes to the Jane and Lisbon relationship in the final season) while I continued writing my diary.
So that’s another week of my lockdown experience. I feel like, aside from unexpected difficulties with my mental health or an autistic meltdown, I’m finding a groove where I’m as productive and comfortable as I can be. It’s far from what I would’ve wished for during this period (apart from the new Taylor Swift album) but I’m cautiously optimistic that I’m managing a bit better, in the sense that I’m better at taking things day by day.
So I hope this was interesting to read, interesting to see someone else’s experience and maybe escape your own life for a bit. I hope you’re all doing well, staying safe and coping the best you can.
Finding Hope 