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.
A Week In My Life (December 2020)
Posted on December 12, 2020
Since my last week-in-my-life post didn’t include any time ‘at’ university, I thought I’d write another one this semester, one that included uni time and all that that entails.
After three really bad mental health days, I was a bit wary about the week ahead – starting it feeling so depleted. It ended up being a very mixed week, as they’ve all been recently. Maybe it’s an end of term thing: I start off strong but then I hit a wall somewhere in the middle and it doesn’t always take much. I’ve worked hard this semester so hopefully I’ll be able to finish all of my assessment stuff fairly quickly – it’s mostly just polishing now – and get some proper holiday time. Last year, I had to work every day of the Christmas break, only taking Christmas Day off. So some time off would be really nice.
The week in this post began on Monday 30th November and ended on Sunday 6th December 2020.
MONDAY
I slept badly so I took my time getting up and having a shower. I had some breakfast (and ALL of my pills – there’s so many at the moment, what with my normal medication, extra supplements, and some antibiotics) and then I got myself sorted for my session with Richard.
We spent about three hours on the call, working on the production for a new song I’d written, and then just chilling out together, chatting about our uni work, the various projects we’re working on, the tv shows we’re watching, and so on… We’re always texting and we have our Zoom sessions but we haven’t hung out together in months and I really miss that.
When we finally hung up, I was exhausted and what started as an episode of The Split while I recovered turned into finishing the second series. It was really, really good – even better than the first series. Nicola Walker and Stephen Mangan were particularly fantastic. I love Nicola Walker; she was incredible in Spooks, Scott & Bailey, River, and now in Unforgotten and The Split. Her performances throughout this second series have been breathtaking and the ending had me in floods of tears. She blows me away every time.
I spent what was left of the afternoon and early evening working on my assessment essay. Then Mum and I had dinner together before starting a rewatch of Unforgotten (yes, we’re on a bit of a Nicola Walker kick at the moment), while I did some diary writing. I’m so far behind, what with everything I’ve been dealing with healthwise and doing for uni. My anxiety over it is so high but so is my anxiety over my uni work so the two are constantly pushing against one another. I never have any respite from it and it’s exhausting.
I managed to go to bed reasonably early, which was an achievement, especially since I had to get up early the next morning for uni.
TUESDAY
Again, I slept restlessly but with disturbing dreams that I couldn’t quite remember when I woke up; it just left me feeling kind of uneasy for most of the day, which wasn’t fun. I swear, I’ve had as many nightmares or disturbing dreams since the pandemic began than in my whole life up to that point. It’s horrible; I really feel for anyone who deals with this generally, independent of the pandemic.
I got up, got showered and dressed, had breakfast and pills before logging into my first class of the day. I could only stay an hour of the two (pre-arranged with my tutor) but we spent that hour identifying and discussing different kinds of hooks and how they’re used in songs. Then I had to sign off for a call about my rheumatology referral. It seriously cannot come quickly enough; the pain in my arm, hand, back and legs is only getting worse as time passes.
Before I got down to work, I checked my Spotify stats and saw that the Honest EP has surpassed 30,000 streams. It’s a weird feeling, knowing that so many people have heard these songs. A good feeling, but a weird feeling. I can’t really describe it.
I spent several hours working on my essay, all but finishing the first draft. So that was a good bit of work done – more than I can usually manage between classes. I had some lunch, some time to dedicate to my diary writing, and then I was signing back into class.
The afternoon’s workshop was a productive one. We got through a lot of songs and we had some really good discussions, despite only having an hour. Everyone was really lovely about my song, which meant a lot since it was such a personal one. I also had questions about the grading criteria and learning outcomes because I find the language very unclear and that lead to a good conversation about the assessment as well as inclusivity and accessibility of the course. So it felt like a really positive class, in all sorts of ways.
When my class finished, my Mum and I FaceTimed with my Granny for her birthday and I also got to see my aunt (they’re in a bubble together), which was really lovely. I don’t think I’ve seen either of them in person since Christmas, which has been hard, even knowing that it’s the right, responsible thing to do. It a weird world – a difficult world – when the best way to love someone is to stay away from them.
I also FaceTimed with one of my parents who’d had a particularly rough day. So it was a very social day! It was good to do but I definitely felt drained afterwards.
I was having some downtime, doing some blog writing and watching TV, when another of my other parents called me and told me to change channel to a very cute programme about puppies. It was indeed very cute and it did make me wish for a puppy again, not that we intend to get one in the foreseeable future – we don’t have enough time to properly devote to one so it wouldn’t be fair. But I’m always up for any puppy time I can get.
But the best bit was how one of my cats, Mouse, reacted to it. She was fascinated by the puppies, even patting the screen, trying to touch them. It was utterly adorable. She sat patiently through the advert break and was just as absorbed by the puppies when they returned to the screen. She watched intently for the rest of the programme and then, when the credits rolled, she got up and walked away. It was the funniest thing.
So that was very adorable.
Mum and I had dinner with another few episodes of Unforgotten and I finished my essay. Well, the first draft anyway. It needed a read through and a tidy up before I sent it off but what I’d wanted done for my tutorial session was essentially done. A productive day’s work and in bed before eleven: not bad at all.
WEDNESDAY
So Lockdown 2.0 has ended, not that it felt like much of a lockdown. If you’re going to call it a lockdown, then you have to do what you did in the first lockdown and shut everything down. Otherwise it’s not going to make a difference, people are going to have even less faith in it as a safety measure, and they’ll flaunt the rules because they don’t think it matters. It’s been driving me up the wall. I’m so frustrated: with the government, with the people ignoring the rules (and boasting about it), anyone who is putting casual convenience over the safety of others… Yes, that’s a generalised statement. I’m aware that there are important and necessary reasons to go out but there just seem to be so many people who just don’t care that we’re still in a pandemic and I find that incredibly distressing.
I woke up at eight and intended to get up but then suddenly it was quarter past nine so I must’ve accidentally gone back to sleep. I did manage to get up then and headed straight for my desk to record the vocals for the song I’d been working on with Richard. Even though I love it, for some reason, I find it really hard to motivate myself to start recording so it seems that the easiest way is to just get up and do it before I can get into a procrastinating mindset.
That done, I had breakfast and a shower, leaving me with just enough time to tidy up my essay and send it to my tutor before heading out to have a blood test. I had one a month or so ago and it showed dangerously low Vitamin D levels so I’ve been on a high dose Vitamin D supplement to try and build them up again. This blood test should tell us whether they’ve helped and what the next steps are.
It was almost dark by the time we got home so we settled down in the living room, lit a fire (one of my favourite things about this time of year and about this house – the fireplace) and continued watching Unforgotten. I also kept working on my Lockdown 2.0 blog post. I’d been keeping the list updated throughout the lockdown so it was just a case of tidying it up, adding all the right links, and writing an introduction and conclusion.
I had to stop in the middle to sign in to my tutorial. I had a really good session with my tutor. He was complimentary about what I’d already done and had some really good feedback so I feel pretty good about my next steps. I know what I need to do and now I just need to do it. Then I get one more tutorial before the holidays for any final feedback or guidance. The deadline is in sight, which is more than a bit scary. I just really, really want to do well.
I was exhausted afterwards but I still managed to finish and post the Lockdown 2.0 blog. So I guess it was a pretty productive day.
That done, I had a quick scroll through social media and saw that people had started to post their Spotify stats of the year, both as listeners and as artists. I always find this difficult, regardless of any rational talking to I give myself, regardless of whatever I’ve personally gone through or achieved that year; it just taps into my lifelong insecurity of not doing well enough, not being ‘good enough.’ So it’s not easy. This year should’ve been different, with four of the five tracks from my EP being released since January, but Spotify doesn’t count anything after 31st October and with ‘Honest‘ coming out on 30th October, only one day of its streams were counted. So my most successful song wasn’t a part of my Spotify Wrapped, making it completely inaccurate. So I haven’t shared it – haven’t wanted to – and I feel a little bit robbed of that. I have included the percentage increases here but in reality, they’re a good bit higher since ‘Honest’ did so well.
Hopefully next year, or whenever it is that I release more music, the figures will be more accurate and I’ll feel confident in sharing them. This ‘comparison anxiety,’ as my friend called it, was something I really wanted to work on in therapy this year but even when I’ve felt able to ‘go’ to therapy, it’s been difficult to get much further than damage control around the pandemic. That’s been really difficult – a real frustration – this year. I’ve just felt completely stuck at therapy: while I want to move forward, I’ve only felt able to maintain the fragile balancing act I’ve managed to create. And I haven’t even been able to do that a lot of the time.
Early evening, my Mum and I FaceTimed with my Granny before having fish and chips with one of my other parents. We watched the new episode of His Dark Materials (Series 2 Episode 4) and it was so good. Oh my god, that cliffhanger!
I was just getting ready for bed when I felt the pain in my back. It had been aching all afternoon but that’s not unusual right now but then it started to get worse, sharper and higher. It came on so suddenly that I couldn’t get from the bathroom to the bedroom without Mum’s help and then, when I collapsed on the bed, I couldn’t move because the pain was so bad. It seems to come in waves: there’s the pain and then it surges like a series of electric shocks before finally (FINALLY) receding back to the original pain level. And I never know how long it will go on for; sometimes painkillers seem to make a difference and sometimes it seems to go on for ages regardless. I’m not entirely sure how long this one went on for but it was at least half an hour. And then it always takes quite a long time for me to get my body to relax afterwards, my muscles having been so tense while the electric shock pain was so bad. So even though I was exhausted, it took me a long time to get comfortable and drift off.
THURSDAY
It took me a long time to get up because I was so stiff and sore. The rheumatology appointment can’t come soon enough. I struggled through breakfast and a shower and then had a Zoom production session with Richard, continuing to work on the song we’d started on the Monday. Considering how out of our normal styles the song was, I think we did a good job, especially for a demo and I’m definitely interested to hear what my class have to say when they hear it.
We also had some chill time, just chatting and hanging out, almost like we would if we were actually together, which was really nice. We’re coping with remote sessions but I cannot wait to hang out again properly, have face-to-face writing sessions, and actually do things together. Or not do things together but do that together in the same room, if you know what I mean.
When we finished, I did a couple of FaceTime calls with family and then collapsed on the sofa. I was completely exhausted. Me and Mum watched the last episode of Unforgotten Series 3 and oh my god, it gets me every time (if you know, you know – I’m not going to spoil it but the acting is incredible). Nicola Walker does not get the credit she deserves, although from what I’ve read in interviews, she seems to be pretty happy just buckling down on great projects and not doing the whole spotlight thing. (I’m so annoyed with myself that I missed seeing her in The Curious Incident of the Dog in the Night-Time – I would love to see her on stage and it’s such a great book.)
Mum and I were having a relatively chilled evening until I asked her about her call with my doctor. There had been multiple things to update her on and ask about but some of the advice she’d given was just really triggering and upsetting. I will talk about it at some point because I think it’s an important thing to have conversations about but it’s not something I’m personally ready to talk about yet. But it really upset me and just killed the warm, cozy mood of the evening.
And then, to make matters worse, Mouse (the cat) brought in a dead mouse, which is something that almost always sets off a meltdown (fortunately Mum understands this and is okay with dealing with it while I do my best to avoid said meltdown). I managed to remove myself quickly enough that I didn’t have one but it was just the final straw on what I could handle that evening so even though it was still quite early, I went to bed. It was all just too much.
FRIDAY
I slept for about twelve hours but I still woke up feeling exhausted, depressed, and miserable. I feel like I spent most of the first lockdown working really hard to get my mental health into some sort of box so I felt like I wasn’t constantly overwhelmed but most days, it still feels like I’m walking on a tightrope and it takes so little to knock me off and back into that suffocating depression. And that’s exactly what the night before did.
I really struggled all day. I just felt completely unmotivated and so, so tired. I was also having to deal with side effects of my antibiotics – they left me with a disgusting taste in my mouth all the time – which was just an extra strain. I only had one day left so I tried to focus on that but it just felt so much harder than it would’ve had I not already been feeling so awful. I did manage to finish and post the blog post about What’s Next for the Honest EP so that was good to do and helpful for my mental state – ticking stuff off my list always gives me at least a bit of a boost.
The good news of the day was that Kalie Shorr had re-released (I guess) her debut album, Open Book (which I wrote about here), but as Open Book: Unabridged, the original album plus four more songs. ‘My Voice’ and ‘Lying To Myself’ had already been released as singles and she’d played ‘Eighteen’ during her livestream concert but ‘Out Of It’ was completely new, which was really cool. They’re all stunning songs and all in their own way. ‘My Voice’ is empowering and unapologetic, as well as a very effective middle finger at the Country labels in Nashville. ‘Lying To Myself’ paints an aching authentic picture of insecurity after a break up with incredible lyrics like, “I picked out all my favourite things you said, then like a delusional architect, I built you up like a house of cards” and “You liked it up on that pedestal ’cause damn, you looked incredible, but coming down’s inevitable.” ‘Eighteen’ is a brutally honest, heartbreaking song about looking back at a relationship that really wasn’t okay, where you were all in but you were only ever treated badly. And ‘Out Of It’ is similar to a previous Kalie song, ‘Awake,’ but this time, she’s saying ‘no’ and isn’t going to get pulled into the bullshit; this time, she’s cutting the cord between herself and the other person. And because I’m a lyric nerd, here is my favourite (or one of my favourites) from each song:
My Voice: “Too rock for country, too country for punk / But who said I had to pick either one / Tattoos at the Opry / I could cover em up but it’s not me”
Lying To Myself: “I’m a little out of touch with reality, it’s never been that nice to me / I like the pictures I paint the best”
Eighteen: “I see you out with younger versions of me / While I’m trying to find who I used to be / I’m terrified that you and I will always be chasing eighteen”
Out Of It: “Your mom and dad put you through hell / You tell your secrets ’til you scare yourself / It’s a big dramatic entrance then you leave / And now I’m the girl I said I’d never be”
Late afternoon saw me dragging myself through some preparation for a mental health assessment that I have coming up, which was another thing I needed to do. But I was so tired that it took forever and I spent a lot of the time it took with my head on my arms, just trying to think. It was just a really bad mental health day. There was no way around it so I just tried to get through it. I was too tired to do anything really but I still tried to write my blog post about the UniversitiesUK Conference. I find it so hard to just do nothing; it causes me a lot of anxiety so even when I’m exhausted, I’m still desperately trying to do something.
By necessity, it was a quiet evening and I went to bed early, all too aware of how soon I had to wake up again to watch Maren Morris’ livestream concert.
SATURDAY
After MANY alarms, I struggled up at 2am to watch Maren Morris’ livestream concert. It felt very strange to not be a part of the crowd, singing (or screaming) along with her but it was so good to see her perform and hear her gorgeous voice again. It was very comforting, like a reminder that some things don’t change. The world might’ve turned upside down but Maren Morris is still Maren Morris, an exceptional songwriter, singer, and performer. So I was really grateful that she and her team put together this show for us.
I didn’t get back to sleep until about five and couldn’t be roused for anything. I eventually woke up at twelve and then I felt so tired and heavy that I could barely get out of bed. I spent several hours unable to do anything but lie on the sofa and watch TV. Disrupting my sleep patterns always throws me for six and with the depressive feelings still very overwhelming, I was really struggling.
Eventually I managed a shower, which completely exhausted me. It also makes me feel sick and dizzy to stand up for the amount of time it takes to sort the shower, have the shower, and then get dried and dressed. One more thing on the list of things being investigated.
Back in the living room, I put on Lucifer and attempted to do something productive. Mostly I ended up jumping between this and my diary, writing a few sentences here and there before switching back, just too tired to think enough to write anything decent. So that was frustrating, plus I had the nerve pain in my leg again – not the electric shock version but the bit that always comes before that (even if it doesn’t turn into said electric shock feeling) where it aches deeper than feels physically possible. So that didn’t help.
Mum and I had an early dinner and then she went for a swim. I really wanted to go and felt like I should – I’d been looking forward to it ever since the pool closed for lockdown – but I just had absolutely no energy. So she went and hopefully I’ll feel able to go next time. I got some good writing done though, so at least the time didn’t go to waste.
Having gotten up so late, I ended up going to bed too late, which was a bit of a pain. My sleep schedule is so easily knocked off course and then so difficult to correct. It was worth it though. Seeing Maren Morris perform is always good for my soul.
SUNDAY
I slept restlessly and struggled up around ten. I still felt incredibly depressed and it took a huge amount of effort to just get out of bed, into the shower, and up into the living room. I had a quiet day, not that that I think I could’ve managed anything else. I managed to finish and post my blog post about speaking at the UniversitiesUK Conference. I also finished all the paperwork for the upcoming mental health assessment and worked on the interview questions my university had sent me about doing the conference (that interview has since been posted). So, considering how awful I felt, I did manage to get something out of the way and check some things off the ongoing list, which – as I think I’ve said – at least helps me to keep my mental state from sinking lower. Having said that, I don’t want to promote the idea that being constantly productive is essential for your mental health; I’ve just found that, if I can tick something off of my to do list, even if it’s something tiny, then that can help me to keep moving forward, help me not to get stuck in my depression. It doesn’t always work; sometimes I just have to surrender to a bad day and hope that the next one will be better. But trying , even if not succeeding, does seem to do something positive.
In the evening, one of my parents came over and the three of us had a chilled evening, eating dinner in front of the fire and continuing our rewatch of Lucifer. It was gentle and undemanding and I did feel better for it. I often simplify my mood into two levels: surface and deep. And in this case, even though my deep mood was still very depressed and twisted up, my surface mood was a bit lighter. Calling it a surface mood doesn’t, to me at least, make it any less important than the deeper mood; it just means that it’s the mood that deals with the day to day stuff while the deeper mood is the one that you carry inside you and the one that sits with all the big, important stuff in your head and in your life. I guess, I see this mood as the one that’s so intricately intertwined with a person’s overall mental health. For example, in the previous few days, I was depressed on both levels (I’m not sure how good a job I’ve done of illustrating that but it’s the truth) but after the Sunday evening, my surface mood started to lift out of that depressed place. My deeper mood was still there though (and still is as I post this). But the lightening of my surface mood did make it a bit easier to face Monday and the coming week.
I tried to go to bed early but as usual, failed. I swear, I’m desperate to sleep all day and then, at about seven o’clock in the evening, my brain snaps on and starts firing wildly, almost too fast for me to keep up with my own thoughts. It’s so frustrating. It’s almost as if my brain has got day and night confused.
So there you have it: another week completely different from the last. I think I’m grateful for that – it must be better than feeling like you’re stuck in a hamster wheel surely – but it’s not without it’s difficulties. When planning is the thing that makes life easier to bear, it can be hard when each new week seems to bring something unexpected.
You guys seem to like these posts so I’ll be sure to do another one soon but probably not until the new year. Touch wood, I can get all of my coursework done in the next ten days and then I can have some time off (although I’m not exactly sure whether it will feel like time off – my brain already has an anxiety fuelled to-do list waiting for me – but I’m going to try my best.) Anyway, I hope you enjoyed reading this and I hope to see you in the next post.
Seeking Treatment For Chronic Fatigue – Part 1
Posted on November 21, 2020
As I’ve mentioned before, I’ve struggled with extreme fatigue all my life (I talked about this in my ‘Tired‘ blog post); Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (often referred to collectively as ME/CFS) have been tossed around since I was twelve years old but I wasn’t officially diagnosed until last year. This kind of acute ‘unexplained’ fatigue – unexplained as in there is no obvious cause, such as exercise or lack of sleep – is also a common experience for autistic individuals, as well as related symptoms like headaches and bodily pain.
I’ve been managing these high levels of fatigue for most of my life, trying various things to improve my quality of life. And I continued searching for a cause. I had test after test but nothing ever gave us an explanation. I resisted the ME/CFS diagnosis even as it seemed more and more likely because there’s no cure, not even a reliable method of management, but eventually it seemed the only way to move forward. So, after a long talk with my GP, she officially diagnosed me with Chronic Fatigue Syndrome and we began discussing various options for next steps and support. She referred me to the local Chronic Fatigue Clinic and I anxiously awaited my session.
It was a bitter, heart-wrenching disappointment. I left in tears. Maybe it would’ve been helpful when I first started experiencing these symptoms (I think the longest any of the others there had been struggling was two years) but twelve years in, I knew more than the person delivering the information, had found everything suggested to make no difference or be outright unhelpful, and I just felt so patronised. It was an awful experience and I couldn’t help but feel so angry that this was the best on offer for what I was trying to manage and had been trying to manage alone (in terms of the health system) for more than a decade.
When we spoke to them after said awful session, they referred me to a doctor that we realised I’d previously seen – years and years ago and had a very traumatic experience with. I was obviously very reluctant to go. My Mum and I spent a lot of time talking about it, about the pros and cons of going and not going. The scary thing is that it’s so easy to get kicked off every list with one refusal so I said that I would go, despite having had such a distressing appointment with him – one I’m sure he doesn’t even remember. But before we contacted that clinic, we spoke to my GP again. We explained how upsetting the experience had been and how worried we were that it was only going to be worse this time, considering I would be going in with the baggage of the previous appointment; we told her that I would go if that was how it had to be to continue on this path but she felt that we were right, that it wouldn’t be helpful given the circumstances and as I’d technically already seen him, it wouldn’t cause any problems in the system. We asked if there were any other options and this was when she referred me for the hypermobility assessment (these posts are now out of order, not only because it’s been such a confusing and complicated process, but also because I’ve had trouble keeping things like this clear and ordered in my head since the pandemic started).
I’ve now had this appointment and been diagnosed with hypermobility, which potentially explains (at least in part) my problems with fatigue and pain. (At some point, we’re going to need to lay out all of these diagnoses and work out whether there’s any overlap, whether any of them are now redundant. But that’s a job for another day.) Apparently those with hypermobility are seven times more likely to be autistic, which is a very interesting piece to add to the whole puzzle. The post goes into it in more detail but basically, we’re now waiting to find out whether or not various routes are possible. For example, I’ve been referred for hydrotherapy but we don’t know whether I’ll get it and if I do, when it will be possible with the pandemic and lockdown. That has really stalled things. So it’s one waiting game after another.
But we’re not simply waiting. We – my Mum in particular – are also looking into other angles, other medical professionals who specialise in fatigue or who have studied fatigue in depth. We’ll take any advice we can get. I resisted a diagnosis of CFS for so long because it felt like admitting defeat – an expectation that I would just have to live with it with limited options – but I don’t accept that, not anymore. I’m participating in every research study I can find that I qualify for and my family and I continue to research potential specialists and potential avenues of treatment or even simply more effective management of the symptoms. The pandemic makes it hard but I am not willing to accept that this is going to be my life, that there’s no hope. Not that long ago, NICE (The National Institute for Health and Care Excellence) removed ‘graded exercise therapy’ as a treatment for ME/CFS, after both research and those suffering with the condition proved that it was actually unhelpful at the very least. It’s slow but it’s progress. And I’ll take all the progress I can get.
Finding Hope 