A Four Month Detour…

I really didn’t mean to abandon this blog but the last four months have been completely miserable, healthwise.

Less than a week after I last posted, I started experiencing what felt like electric shocks in my lower back. It was so painful that, at times, all I could do was scream. Even when the electric-shock-like spasms weren’t actively happening, I was in – quite possibly – the worst pain I’ve ever experienced. And given my experience with chronic pain, that’s saying something. It was horrendous, especially as the painkillers that usually give me some relief weren’t having any effect. Eventually I managed to get some stronger painkillers from my GP and they were so strong that, for the first few days, I could barely keep my eyes open: I was asleep for around twenty hours each day. Thankfully, that did wear off after a while but I still felt slow and blurry while taking them.

It was a completely new kind of pain for me and while we had a few theories from the network of health professionals I’ve worked with, we still didn’t know what was causing it, how long it would go on for, or if it was a permanent change. The massage therapist I’ve done some work with – who has both personal and professional experience of Hypermobile Ehlers-Danlos Syndrome and chronic pain – was a godsend and thankfully, my Mum found a new physiotherapist nearby who had professional experience with hEDS and who was able to come to the house to see me. He was fantastic: he was thoughtful and thorough and explained everything with great care (sometimes multiple times); he really listened to me and took my priorities into account when choosing the exercises for me to do; I felt like he actually cared about me as a whole person, which has not been a common experience. He assessed me and felt that I had a pinched nerve in my lumbar spine, which typically heals in about eight to twelve weeks. That felt like an interminably long time but I was relieved to hear that he expected the pain to go away. He gave me some very gentle exercises to do as I felt able to, with the goal of strengthening the muscles in my back to support my especially hypermobile lumbar spine (and hopefully reduce my chronic pain). Between the pills (despite the side effects), the massage, the physiotherapy exercises, and the time that I was forced to take to rest properly, the pain finally started to decrease and I was able to slowly increase my mobility – I’m still working on that.

Unfortunately that was only the first part of the story. In early October, I started to struggle with multiple symptoms that I’ve rarely experienced, including stomach pain, nausea, acid reflux, and difficulty swallowing. It made eating so difficult that I could barely keep any food down and it made sleeping difficult because I felt worse when I was lying down. I felt awful but my Mum had been unwell a week or so earlier and so I assumed that it was the same thing and would pass relatively quickly; I thought I just had to rest and wait it out, like I often do with a seasonal illness or the symptoms of my chronic illnesses. But that didn’t happen. The symptoms got more intense until I wasn’t eating at all – sips of water were all I could manage – and the POTS symptoms I experience everyday had become debilitating. I hate going to the doctor but if there was ever a time, this was it.

I managed to get an appointment with one of the GPs pretty quickly – not my usual GP but that isn’t unusual and I did manage to get an appointment with her for later in the week – but when I explained what was happening, this doctor said that there wasn’t time to explore each of the symptoms so she questioned me about the difficulty swallowing, prescribed me a medication, and sent me on my way. I was deeply unimpressed and had no confidence in her diagnosis or the medication: treating one symptom when several are presenting at the same time… that seemed very unlikely to help whatever was causing the multiple symptoms. I’m passionate about the NHS (and about improving it) but it’s not exactly straightforward when I’ve been repeatedly invalidated and mistreated by medical professionals.

I didn’t have time to even take the medication before the stomach pain got so bad that I couldn’t move. We ended up calling 111 and their recommendation was to call an ambulance and head to A&E. The idea of being in an ambulance – as an already overstimulated autistic person – felt horrific and I almost had a meltdown; I didn’t know what I was supposed to do when I felt like I could barely move. Eventually my Mum had to all but drag me into a cab to go to A&E. For once, being autistic was a help rather than a hindrance because the receptionist moved us straight from the initial waiting room into the actual A&E department where people were being assessed and treated. We still had a considerable wait ahead of us, which felt incredibly long given how much pain I was in. It wasn’t exactly a restful environment either: besides the patients and nurses coming in and out, there were paramedics and police and one young woman who cried the entire time she was there. If I hadn’t been in so much pain and so overstimulated, I might’ve been impressed – and a lot more sympathetic. But I was running on empty and on the edge of sensory overload and all I wanted was some quiet; it was a rough night – for everyone clearly.

After a couple of hours, several different nurses did a series of tests, including taking blood and doing an ECG (during which my cannula from the blood draw was jostled, leading to the bruise pictured below – that hurt for a while). A little while later, another nurse gave me a low dose of morphine that did, thankfully, slowly bring my pain level down. But after that, we were left for several hours; even when we were the only people left in the little waiting area, no one came for us or even gave us an update. I was starting to think we’d been forgotten about.

When a doctor did finally call my name, he didn’t have any real answers for me. He did at least have a reasonable understanding of hEDS and how it can cause strange or skewed test results: a hEDS body does not react to anything the same way a non-hEDS body does, surprise surprise. So there was no obvious explanation for my symptoms but he prescribed antibiotics and recommended getting a referral to the hospital’s Gastroenterology department if the symptoms weren’t resolved by the antibiotics. I don’t love the approach of just throwing medication at a problem and hoping it helps but I was desperate and that was the only option being offered.

(Left: the bruise left by my cannula, having being knocked during A&E tests // Right: me, asleep on the sofa the day after the night spent in A&E with Izzy keeping me company)

We got home around seven and I was asleep the moment I lay down on the sofa. I was just completely exhausted. I took the antibiotics I’d been prescribed but then, when I saw my actual GP, she was surprised by how high the dose was, adjusted it, and prescribed another antibiotic, as well as sending the referral to the Gastroenterology department at the hospital. Again, it wasn’t exactly reassuring since we still didn’t know what the actual problem was and I was starting to spiral a bit about the possibility that this was more than just a passing illness, that it was something much more serious that was getting overlooked (with the potential to lead to an even more debilitating outcome). But I tried not to go down that rabbit hole. I was trying to at least give the various medications a chance to work.

Over the next few weeks, I just lay on the sofa and tried to eat when I felt able to. Between my body trying to fight whatever was going on and the fact that it was trying to function on very little fuel, I was barely able to do anything. I was forced to rest, to literally just rest; I couldn’t even do the most passive of activities. I was physically, mentally, and emotionally exhausted. My body and my brain were barely functioning: a good day consisted of a shower and watching TV (and eating what I could). But the medications started to work and, very slowly, I started to feel better and the symptoms started to decrease in intensity, even if I was still building back up my capacity after so long with so little fuel in my body. And then, just as I was finishing the courses of medication, I started to feel actually well again and I don’t think describing my mood as “overjoyed” would be an exaggeration. Eating went from being a struggle to being joyful (a word I don’t think I’ve ever used in the context of eating) and I was sleeping well, not only for the first time in weeks but in months: I was feeling so good that it felt more than a little surreal but I wasn’t complaining. It was a huge relief after eight weeks of feeling so terrible.

But less than a week later, the symptoms started to reappear and I started to feel really unwell again. I had bloodwork done (which had been ordered way back when I’d first gone to the doctor) but all of the tests came back fine or inconclusive again. I was wondering if the medications had been treating just the symptoms and not the underlying issue, which made me deeply anxious about what that underlying issue could be. I wasn’t sure what the next step was supposed to be but I’ve had a lot of conversations with a lot of different people in my various circles and, long story short, it seems that these digestive issues were a delayed response to the increase of one of my long term medications: some (professionally guided) experimentation has proved as much as is possible that my digestive system can’t handle this medication over a certain dosage so I’m currently taking a break from it (which is something you can safely do with this medication) while getting my food routine and some of my energy and strength back. After Christmas, or maybe the New Year, we’ll reassess and I’ll likely start taking it again at the lower dose since I had had a positive experience with it until that final dosage increase.

So that is where I’ve been: too sick to do anything, too sick to even write a blog post about being sick. When I say it’s the most unwell I’ve ever felt, I’m not exaggerating. I’ve dealt with a wide range of symptoms and various levels of pain during my life but never have I been so ill, in the way we typically picture illness. I’ve dialled everything right back to absolute basics and I am starting to feel a bit more normal, despite a few bumps in the road. Fingers crossed, I’ll be feeling more like myself again by the time the New Year rolls around…

Seeking Help For Chronic Pain (Year Three)

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.

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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.

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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.

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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 (June 2023)

The last Week In My Life post seemed to go down well and I have fun writing them so I might do them on a semi-regular basis, if I’ve got a week with some interesting stuff in it. I’ve been super busy recently and will be for a while so there may be a handful of weeks worth writing about; I guess we’ll see. This week was crammed full of interesting experiences, exciting and inspiring, but it was also really hard between the heat and my ongoing, searing back pain, plus the relentless mess that is my mental health. It seemed like a week that would be both interesting to write about and potentially read about.

The week in this post started on Monday 19th June 2023 and ended on Sunday 25th June 2023.


MONDAY

I got up early-ish, had a shower, and settled at my desk in the living room. I worked through my daily habits, like my daily Duolingo Dutch lessons (trying to revive my connection with my honorary Dutch heritage), and got to work on some blog writing and research. It was a quiet morning, which was good given how chaotically busy I’ve been and still am.

Early afternoon, I had a physiotherapy appointment to hopefully figure out what was going on with my back and how we might help it heal, help me manage the pain. But we got there and it wasn’t in their schedule: there’d been some administrative confusion but she had some time the next day and fortunately, the practice wasn’t far from my house so it wasn’t a huge amount of time wasted. We were back home pretty quickly and I could get back to work.

I wrote more of the blog post I’d been working on, did some diary catch up, and sent some emails that I’d been procrastinating. Emails are actually one of the ‘mundane’ things that I really struggle to do, I think because I had a deeply traumatic experience involving an email when I was a teenager that I’m still trying to get over. But still, every time I have to open what feels like a high stakes email, the level of anxiety I experience is overwhelming… and exhausting. I’m still working on it but I’ve trying different things since I was in my twenties, when I realised what a problem it was. I’m thinking about hypnotherapy…

I also had a couple of cool things to do. I worked through a series of interview questions for Indiefferential Magazine and sent them off (I think the issue is out at this point) and I revived my cat instagram, aprideofcats. I get so much joy out of posting pictures of my cats but I’m sure people would get bored of constant cat pictures, plus my main instagram account is basically my work account (that does sometimes involve pictures of my cats because sharing my life as a singersongwriter, neurodivergence and mental health activist, etc does mean sharing from all parts of my life and my home life is pretty full of cats, hence the ‘pride’ in the title).

They’re just so cute! So it’s going to be good fun to get to post about them more often again, hopefully making social media a happier space for myself after some difficult times on various platforms.

In the evening, I had a hydrotherapy session booked but my back pain was still so bad that the thought of going through the exercises and then having to shower afterwards made me feel nauseous. My back shouldn’t still have been hurting – the painkillers should’ve done the job according to the doctor – but I was still in so much pain even when taking the medication. Moving around without it was unbearable. So I needed to go back to the practice and ask what to do: the doctor had told me to give the drugs a couple of weeks and then come back if it wasn’t improving and it wasn’t. So, time for another trip to the GP.

So I put on a movie, did some more writing, had a scroll through social media, and went to bed at around eleven, although I didn’t get to sleep for a couple of hours.


TUESDAY

I woke up just before nine but lay in bed for a while, working on my habits, scrolling through social media, and replying to some messages that I hadn’t had the energy to reply to the night before. Then I had a shower and set myself up in the living room. spending several hours writing more blog stuff. It was set to be a chilled but productive morning but then the pain in my back slowly started to build. By the time a couple of hours had passed – just as it was time for my physiotherapy appointment – the pain was so bad that I couldn’t actually move. The slightest movement sent pain roaring through my back and what was even worse – and quite scary – was that I also had pain creeping down my leg until I couldn’t move that either. It was awful; it might be the worst pain I’ve ever been in, worse than the cracked rib, worse than when we’ve had to call ambulances because of migraines.  I don’t know what I did – and neither does anyone else, it seems – but clearly I seriously fucked up something in the muscles in my back.

Because the physiotherapist was so close, she was nice enough to run down and come and talk to me where I was stretched out on the sofa. She was lovely and suggested physiotherapy when I’ve recovered from the pain, which she’d be happy to guide me through, as well as recommending a TENS machine – a little gadget with wires and electrodes that passes electric pulses through your muscles to relieve pain – to help with the pain while I recovered. I’d never heard of them but her explanation was enough to convince me and when she left, I ordered a highly recommended one straight away.

Pausing to look at social media, I saw that Candi Carpenter – whose EP I’ve been (and still am) completely obsessed with – was playing a show in London, a rare occurrence since they live in Nashville. I missed their show last time, I think because I was still too anxious around COVID so I wasn’t missing this one. I booked tickets, for both me and my Mum, who is also a big fan. It was gonna be a blast; I couldn’t wait. (Spoiler alert: it was fucking fantastic.)

The pain eventually receded and I spent a couple of hours working on blog posts before going to therapy. My therapist and I had both created lists of things that we feel need to be discussed and worked through and we compared them, merged them; it wasn’t fun. In fact, it was pretty miserable and stressful. I know therapy isn’t supposed to be sunshine and rainbows but god, sometimes it feels like peeling layer after layer of skin off until there’s nothing left. Sometimes it feels unbearable. But I got through it and there have been harder ones since.

I walked out and when I checked my phone, I saw that Taylor Swift had released all of the international dates of the ERAS Tour (I swear, she always announces or releases stuff when I’m therapy – it’s weird). That is super exciting news because I want to go so, so badly but it was also really stressful, thinking about what an absolute disaster the ticket sales in the US had been. I’m not keen to go through an experience like that; it’s meltdown territory for sure.

I flung myself into the car and started the registration process on my phone as we rushed home. I set up multiple screens at my desk to register properly and register on behalf of a couple of family members; being ‘the Taylor Swift girl’ does result in this kind of scenario occasionally, not that I really mind. It wasn’t stress-free process, especially after the mess that was the US ticket sales. And the venue accessibility doesn’t seem to make it any easier; in fact, it’s probably harder because there are fewer accessible seats. So that was stressful but I did have a handful of chaotic and funny conversations with friends who were also trying to register. We’d all love to go together but I’m not sure we’re organised enough for that; I guess we’ll see when the tickets actually go on sale. It would be so, so fun though.

I spent the rest of the evening having a somewhat calmer catch up with some friends. I was too tired to do much more than that. I did do some (very) early Christmas shopping, something that’s consistent with my previous experiences with Phenelzine: for some reason, my brain just gets hyper-focussed on the idea and the urge to be prepared takes over and suddenly I’ve bought presents for half of my family (December and January are always a lot because, as well as Christmas, most of the family have birthdays in those two months – it can get very expensive so starting this early isn’t necessarily a terrible idea even if it looks weird on the surface).

I also continued making bead bracelets, inspired by the ERAS Tour and my current ADHD hyperfixation; it’s really soothing and it’s fun to make them for people, with colours and words that are relevant to them.

I went to bed too late and then couldn’t sleep; I was still awake at three, which wasn’t fun.


WEDNESDAY

I woke up around nine to a very warm day. I was struggling very quickly (hot weather makes the symptoms of my hEDS and POTS even worse, especially if I get dehydrated), as were the cats…

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This is Tiger in her classic ‘IT’S TOO HOT’ position. I felt for her but I can’t help but laugh too because she just looks so funny. I felt even more for our two fluffy cats (who were nowhere to be found – most likely in a cool spot somewhere).

I worked through my daily habits and then got ready for the day, plus packing for the next day since I’d be staying over in London. Then Mum and I got on a train and headed into London and over to South Kensington to experience Dopamine Land. I’ve heard several people say that it was a bit lame but I absolutely loved it. Maybe it’s the ADHD and the craving of dopamine but I had such a great time, playing in all of the different rooms with different lights and colours and environments; it all just made my brain so happy, like it was singing to the same frequency as everything happening in the rooms. It was just a really joyful (and actually quite inspiring) experience.

I kept my Instagram post quite brief but I thought I’d include some more pictures and thoughts here because it was just so fun and made my brain so happy; I wanted to share my favourites and why I loved them so much, although I am tempted to make a longer post about the whole experience. I guess, we’ll see.

The first room was similar to Yayoi Kusama’s Infinity Rooms, which I’ve always loved so I had a blast in there and wished I could’ve stayed longer (that was one of the few that had a time limit)…

I’ve been thinking about it a lot – apart from it being colour and pretty and cool to watch – and I’m not sure I know how to explain why I love them, both Kusama’s Infinity Rooms and this room; there’s just something about them that presses all of the right buttons in my brain and I just feel so joyful in that environment. I could happily have a sensory room in my house like that for when I’m struggling, not that I could probably ever afford it.

Another of my favourites was called Lucid Dreams with a looping video of all these different visual effects with different colours, different sounds, and what look like different textures. It was beautiful and soothing and mesmeric and I didn’t just want to touch it, I wanted to live inside of it. I’d love to know who designed it and who created it; it was just so beautiful and I could’ve sat there, watching it over and over again for hours.

And my other favourite was called Fire Lantern and it was probably the most soothing of the whole experience. It was almost completely dark with all of these lanterns hanging from the ceiling and big beanbags strewn around on the floor. I could’ve wiled away hours and hours, lying on one of the beanbags, looking up at the lanterns in the quiet, just the murmur of other people’s voices in the background. Again, it was another space that would be welcome in my house for when I get stressed and overwhelmed and need to disappear from the world.

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The description for that room read: “Give a moment to appreciate those around us, and those who are not, as you bask under our canopy of glimmering light. Dopamine plays a part in encoding and consolidating memories and fire lanterns hold an important role in many culture’s social events and festivities, lighting the way for souls of the ancestors. Contemplate the beauty of these mesmeric lanterns and remember fondly those with whom you have parted ways.” I thought that was really gorgeous and a nice counterpoint to the more mindless fun of, say, the shadow puppets and the ball pit.

When Mum and I finished there, we headed over to my London home base, to one of my other parent’s flat, and found her and her neighbour in the garden with the neighbour’s two dogs and their puppies (I can’t remember if I’ve talked about them on here before). The little girl, Skye, seemed to just choose me from the moment she saw me when she was a few weeks old and with every visit, she somehow seems even more excited to see me, basically defying gravity to climb up my leg and into my arms. Once there, she settles right down and all is calm again – apart from the other two. It’s one of the most adorable things I’ve ever seen and I’m completely besotted at this point. I tried to stay detached but, with how we’ve bonded, I don’t think I could have, even with all of the willpower in the world.

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After catching up with everyone, Skye firmly snuggled into my chest (often tucked under my chin or with her head resting on my shoulder), the two of us lay down on the sofa bed and had a nap together. I was exhausted – from the travel, from running around Dopamine Land, from the still significant pain – and fell asleep with Skye stretched out on top of me.

I woke up a couple of hours later and Skye was still there – she is just too cute to handle. She was staying for a sleepover, practicing being away from the rest of her family but she remained curled up with me for most of the time we were both there. The three of us had pizza from the amazing Italian place around the corner (the human three of us – Skye was not included regardless of how badly she clearly wanted to be) and watched a movie before going to bed nice and early since Mum and I had to be out of the house at about eight. I didn’t sleep particularly well, anxious about the next day and the potential for triggering more pain in my back, but every time I woke up Skye was either stretched out on top of me or pressed up against me; if I had to keep waking up, that was the way to do it.


THURSDAY

So, before I talk about this day, I need to talk about Breathing Room by Anna Berry, an installation I came across when I was searching for autistic artists during the final project for my Masters.

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Breathing Room by Anna Berry (x)

It’s a tunnel-like structure made up of panels covered in paper cones; to me, they look like petals or leaves or feather but I don’t know what other people see. The outside is rigged to recycled bicycle parts that seem to move at random, causing the panels to shift almost imperceptibly and making it look like the structure is breathing. You almost can’t see it, it’s that subtle. I instantly fell in love with it and waited impatiently for it to travel further south, Bristol having been the closest exhibition site to me. But the week before, I’d seen on Instagram that it was coming to London and not only could I finally visit it, I could volunteer to help put it together in the days before. I was beyond excited. I had to think about it seriously because the back pain was still brutal and I was worried about whether I would be capable of doing everything they’d want me to do but this was an experience that I desperately wanted to do, one that was potentially once-in-a-lifetime. So I decided to try and do my best with the mobility (and strategies) that I had and having talked the whole thing through with my Mum, she decided to volunteer too, both to support me and because she knows how passionate I am about it and we thought it would be fun to do together. So, all caught up…

The morning was a struggle, especially with Skye trying to help me with every task (none of which required the help of a dog, although it was cute), but Mum and I managed to get up and out of the house on time and drove over to the site of the installation. We did get very lost and confused but we made it, only a little late, and everyone there was really lovely (between the permanent team and the volunteers, there were probably about fifteen of us in total). They briefed us on the different cones and how to attach and arrange them and then we got to work. It was quite meditative work, following the instructions over and over again. My only difficulty was the material of the rods, which you could give you some pretty nasty splinters, hence the gloves. But even with the gloves, every now and then I felt like there were tiny slivers of fibreglass burying under my skin and the stinging sensation didn’t go away for days, which wasn’t particularly pleasant.

For most of the session, we were in the direct sun, which did get pretty hot and I managed to get a pretty solid sunburn along one of my arms. And, of course, it’s the only time in my life where a sunburn has turned into a tan and because of the gloves, the line is noticeably high up my wrist – I’ve had it for over a month now and I’m not kidding when I say that it entertains me every time I see it. It just looks so silly.

It was a really cool experience and serendipitously, I ended up getting to meet Anna Berry herself. She was really lovely and we talked about how I’d researched the piece for my MA, how it fitted into a songwriting MA (I might do a whole post about it because I love it so much and find it so fascinating), which got us into a very exciting creative conversation that will hopefully lead somewhere. Well, it will lead somewhere; it could just lead to a handful of different interesting places. All of them could be very cool.

I would’ve loved to have stayed and do the second shift but I was getting tired and my back was really hurting, even with painkillers. So we said goodbye to everyone (that involved walking through a completed section of the tunnel, which took my breath away – it was just stunning) and headed home (London home). I was completely exhausted and ended up crashing on the sofa and sleeping for about three hours. Four hours of coning was surprisingly tiring but I guess I was also trying to cope with the pain.

When I struggled up, we had an early dinner together before me and Mum drove out to High Wycombe to see Tim Minchin; it was the only date that had any tickets at all and even then, me and Mum couldn’t sit together. But we were there for the show and had plenty of time in the car to talk about it afterwards so it was all good. We were just happy to be there. And holy shit, we were right to be. The show was amazing. There’s a weird sort of cognitive dissonance to being at a Tim Minchin concert without any comedy songs although, to be fair, many of his ‘serious’ songs do have lyrics here and there that have a humorous twist. And even though he plays very few, if any, of his iconic songs, the show is incredibly compelling (I found it particularly mesmerising being so high up and watching him play the piano, plus watching him make mistakes was both entertaining and oddly comforting because it showed such a deeply human side to him when often we see him just as this hugely skilled musician and writer). He talked about the theme of the show being songs from different people’s points of view but I thought it gave us a really unique insight into him in a way that his comedy songs don’t. Getting to see both kinds of songs live was really special. I was just lost in the magic of it from start to finish.

When introducing one of the songs, he started talking about neurodivergence and I suddenly got very nervous – almost panic attack nervous – expecting him to make some naively ignorant and offensive comment as so many people do. But he didn’t. He clearly had a nuanced understanding of it and while I doubt it was perfect – none of us get it perfect all of the time – it meant a lot to hear him talk about it:

“There’s a punchline to all this self-indulgent reflection on my capacity… or my tendency, to write songs from other people’s points of view, which involves the extraordinary prevalence of autistic people in my audiences… and my family […] and how they’re so much better than normal people. ‘Normal!’ [Laughs] [Audience laughs] Neurotyps. My daughter is on the Autism spectrum – we talk about ‘neuro-quirky’ – and obviously these days there’s all this terminology. People talk about neurodiverse people, if we’re into policing language, which we seem to be these days: ‘It’s the most important thing: get the language right and all of history’s problems will go away!’ [Audience laughs] ‘Wagging the tail of the dog and the dog’s happy!’ [Audience laughs] Anyway… We’re all just all about words these days. Post modernism. It’s fucking great… [Audience laughs] Words… words, of course, are powerful. So we talk about neurodivergence as well as neurodiversity, [which] is what we all are. Neurodivergence is a certain… is Autism and ADHD and these categories, which of course will change as we discover more. The umbrellas will go inwards and outwards and stuff. [He told a story about a woman asking him to play a song, ‘So Much Love,’ from a musical he worked on about twenty years ago.] Anyway, the woman who slipped into my DMs and asked for that song explained to me that the reason she loves it is because she’s autistic and she finds it very, very hard to communicate with people how she’s feeling and often upsets people because she struggles with… you know, she’s masking all the time and finds it hard to have genuine relationships with people so that song means a lot to her, which meant a lot to me… that she shared that with me. What’s extraordinary is that it’s certainly not the first time I’ve had a message from a neurodivergent person because, since I wrote Matilda, I have had hundreds and hundreds and hundreds […] of messages from autistic people, ASD people, parents of non-verbal ASD people, um… talking about ‘Quiet’ and what it means to them and it’s one of the great joys of my career is that somehow, by writing from the point of view… by me trying to step into the shoes of a six-year-old with a big brain… I’ve managed to tap into an experience of what it might be like to live in the crowded or busy or difficult brain of an ASD person. And it’s kind of also weird because it’s all sort of come full circle because my other connection with Autism is that my daughter has ASD, which is interesting because the song I wrote about her when she was three weeks old, ‘White Wine in the Sun,’ has been donating its proceeds to Autism charities for sixteen and a half years, many, many years before we knew Vi had ASD. And so… I think what I’m trying to say is I always thought I was, like, the absolute definition of the neurotypical person. [audience laughs] I… Really. And I still think I am. My autistic fans and my daughter are, like, [makes a face that looks like ‘are you serious?’] [audience laughs] But… Obviously, understanding what ASD has expanded greatly since my cousin who is very high needs ASD was diagnosed many years ago. What I’ve realised is the thing that I think makes me most neurotypical, which is that, when someone presents me with data that flies in the face of a previously held assumption, I just change my mind. And I’m like, ‘That’s what a normal person does. Like, they’ve got these feelings, then someone presents data that invalidates their feelings and so they go, okay, I’ll feel something differently. And that’s, like, normal, right? And it’s like, that’s not normal. [Audience laughs] And it’s very, very frustrating and probably the source of most of my comedy career is my frustration with the fact that people prioritise their feelings over data. But anyway, fucking humans, eh? I don’t know why we fucking bother. Anyway, here we go, here’s ‘Quiet.’ Just one more thing, my audience as I said earlier tilt neurodivergent and I… I FUCKING LOVE how interesting my audiences are. It’s like… If I feel doubt about my work, I look at the types of people who come and watch me and I just go, ‘Fuck, I’m doing something right.’ [audience cheers]”

That speech almost had me in tears. I don’t think I’ve ever felt so recognised and so valued by a public figure before and I appreciate it more than I can express. I actually wrote him an Instagram message but I have no idea if he ever saw it; he must get so many.

It was an amazing show and even though I was exhausted, I was emotionally and creatively invigorated by it, by the whole day. I’d been thinking about the song inspired by Breathing Room and the show had me scribbling in my notebook despite the dark with multiple different song ideas. If I hadn’t been so tired (and my hands hadn’t been stinging so badly), I would’ve gone home and sat down to write then and there. But when we did finally get home, I was so tired that I just had to go to bed. I think I was asleep in less than five minutes.


FRIDAY

I slept in and then lay in bed for a while, doing my habits – Duolingo, reading a bit, and so on – and having a quick look at social media before getting up just before twelve. After a shower, I settled in the living room and spent a couple of hours working on various blog posts, as well as replying to various texts and social media messages that I hadn’t had the time or the brain space to deal with over the previous few days.

At two, I had my weekly Zoom date with one of my uni friends and we got caught up – and went on many, many tangents – for several hours before watching an episode of Primeval, the show we’re watching at the moment (we both watched it when we were younger and decided that we had to revisit it – we laugh a lot…). It was a really nice call. We always have really nice calls; they’re always a highlight of my week.

We ran over my soft deadline, as usual, (we both have ADHD and neither of us are particularly good with time) and then I ran around like a headless chicken, trying to get everything done and find the stuff I needed before I had to leave for therapy. We talked about a lot of things – I felt very all over the place – and while it wasn’t a brutal session like some of them can be but it wasn’t easy and I was exhausted by the time we finished, plus my back was killing me. I’d ended up almost lying on the sofa in my therapist’s office, trying to find even one position that didn’t make me want to cry or throw up.

When I got home, I discovered that the TENS machine the physiotherapist had recommended had arrived so I tried to figure that out. We attached the electrodes to the most painful parts of my back and, once I’d found the right settings for me, the pain seemed to just smoothly dissipate. It was such a relief that my knees nearly buckled. And after wearing it for a little while, the pain was all but gone; suddenly I could actually move again, although I still had to be careful. The pain would slowly reappear when I turned it off but it did give me real periods of relief, which felt so, so good.

Given that I was heading up to London again the next day, I went to bed early and actually managed to drift off relatively quickly.


SATURDAY

I woke up painfully, before six, and couldn’t get back to sleep. I worked on my habits, had a scroll through social media, and sent some messages when it got late enough that I wouldn’t be waking people up. Then I got up, had a shower, and settled in the living room. I did some blog writing but I struggled to concentrate after such a bad night. But it wasn’t long before Mum and I were packing our stuff and heading for the train.

The Royal Docks isn’t the easiest place to get to and it took a long time – and a lot of effort and pain – but eventually we made it, reaching a complete and beautiful Breathing Room. We sat for a bit and had some lunch, watching people go in and out; I was surprised by how many people just walked past without investigating, especially since it was free. If I saw something that weird, that intriguing – and it was free – I’d be inside in a heartbeat.

It was an incredible experience, even better than I’d expected in all of the time I’ve been waiting to visit it (over two years at this point). It was pretty quiet and after a while of walking up and down inside it, I just sat in the corner of one of the turns and absorbed the experience. I watched it ‘breathe’ as the panels moved, the cones quivering almost imperceptibly, and listened to the gentle creaks and groans. I loved it. I wanted to live in it. I could feel the song ideas spooling out in front of me, like balls of string unrolling and I just breathed it all in. It was one of the most breath-taking experiences I’ve ever had (I know I’m using a lot of breath related language but that’s just what’s coming naturally). Emotionally, I could’ve sat there for hours but between my physical limitations and my time commitments, that wasn’t exactly practical. So, eventually, I very reluctantly dragged myself outside and sat on the edge of the water with Mum. It was so hot and I was so tired that I actually fell asleep for a little bit and then desperately struggled to wake up, drifting off over and over again (which one of the guys on the team found very funny – totally fair).

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But eventually we were up and moving again, parting at the DLR station. I said goodbye to Mum and was sitting, waiting for my train when everything started going wrong (not seriously but in a very not fun way). A man approached me and asked if I could check whether he was on the platform for his destination and because trying to help is my default position, I helped him with his route and then politely made conversation until the train arrived. But then he had me semi-trapped and started oversharing about his life and asking me out (even though he must’ve been at least ten years older than me). And when I said no, he just kept reframing the question and basically trying to emotionally manipulate me into saying yes, trying to make me feel bad for him so that I’d say yes; I couldn’t escape and early on, I’d stupidly mentioned when I was getting off so I was stuck. He wasn’t doing anything but I felt distinctly unsafe and pressured and when we finally stopped at my stop, I flew off the train and was up the escalator and halfway down the street before I turned to see if he’d followed me (that is something that’s happened before and I was not leaving that opportunity open again). I didn’t see him but, shaken, I called one of my parents as I tucked myself into the bus stop and we talked the anxiety down. Writing it out, it seems silly to have felt so freaked out by it but that’s the truth; that’s how the experience made me feel.

By the time I’d done my bus trip and reached my London home, my heart rate had returned to normal and I felt pretty much like myself again. And being greeted by six dogs was definitely a good way to completely distract me and change my mood entirely. Skye climbed up my leg and into my arms, which was possibly even more adorable than it usually is, and we all went inside so that I could lie down on the sofa… at which point all six dogs tried to sit on me. That started out being very cute and ended up being deeply chaotic given that they all got jealous of whoever was being stroked at the time (obviously it’s a bit hard to stroke six dogs at once, even if they are very little dogs). After that, it wasn’t long before most of them went home and me and Skye curled up together and me and my parent settled in for the rest of the afternoon and evening. I’d thought that I’d tried to do some work but, in the end, I just didn’t have the energy and snuggling with Skye and having a family catch up and hang out felt like a more important use of my time.

I did make sure to post some cute pictures on my cat instagram though…

We’ve been trying to sit down and binge watch Citadel, something we both love doing together with a new show when we have the time. We got ourselves pizza (we do actually eat vegetables when we have pizza, by the way – just to reassure you guys that I’m not in danger of developing scurvy) and settled in to watch. We didn’t quite manage it all before the both of us started falling asleep (and Skye was long asleep but I think it’s safe to say that she isn’t Citadel’s target demographic). So we decided to finish it in the morning and I stretched out and went to sleep, Skye tucked into my side. I was so tired that I forgot to take my pills, which shocked the hell out of me: in ten years of taking medication, I could probably count the number of times I’ve done that on one hand.


SUNDAY

I woke up early again, although not as early as the day before, but I couldn’t really mind: it just gave me more time to snuggle with Skye, who was still all warm and sleepy. She just wanted to be close and I was very happy to oblige. So we spent a couple of hours that way; I stroked Skye with one hand where she was curled up on my chest and went through my habits, messages, and social media on my phone with the other. There are certainly worse ways to start the day.

Then, after a shower and some breakfast, we finished Citadel (Season 1). I’ll obviously be writing about it more in my end of the year, media review post, but I really enjoyed it on the whole. There were moments that were a bit too clichéd for my taste but I liked the characters, the storyline, and the stunts looked fantastic. I’m intrigued to see where they’ll take the second season.

It was a very, very hot day, so hot that, even though I absolutely adored Breathing Room, I grudgingly decided not to go; the idea of getting there and back in that heat felt overwhelming. I’m not sure I actually good have done it, between my pain and autonomic dysfunction. So, instead of rushing off, I hung out in the garden with the little community of neighbours, which was really nice. Because of the personal stuff that isn’t mine to discuss – before the last couple of months – it’s been a long time since I’ve been visiting consistently and so I haven’t really been present in that space and multiple people have moved in and out of the block of flats in that time so, since coming back, I haven’t really felt part of the little community of neighbours but now I’m starting to and it’s really, really nice. We had a nice time hanging out, even if I was running on less brainpower because of the heat.

I didn’t take many pictures that day but here is a collage of the photos I took of Skye over the weekend…

I just can’t get enough of her.

The stars aligned and another of my parents was also heading home from London so we managed to meet at a convenient station to catch the train home together. As I was walking there – very slowly because breathing in that heat was like trying to breathe underwater – I listened to the new Maisie Peters album and absolutely fell in love with it on first lesson. I honestly can’t pick a favourite song, or even five favourites; there are a couple that I don’t love quite as much as the rest but I basically love every track. I’ll write about it more in my National Album Day 2023 post when I’ve had more time to listen and think but I think it’s already safe to say that it’s one of my top albums of the year.

I dozed on the train home, even though it was hot and busy and loud, and then, when I got home, I fell asleep properly on the sofa (it was an exhausting week, what can I say) and slept for a couple of hours until screaming pain in my hip woke me up. That was unpleasant. After I worked the pain out of the joint, I struggled up and Mum and I spent the evening catching up, watching a movie, and I did a bit of blog writing. But even with all of my naps, I was still exhausted and went to bed earlier than usual. And I was so tired that not only did I forget to take my pills again but I also fell asleep without turning the light off; I was that tired. I woke up confused in the middle of the night and turned it off and it wasn’t until the next morning that I realised what had happened. Life is really pushing me to my limits at the moment.


So, a busy, emotional week. This was back in June and I was definitely burning myself out, if only because I was so excited to feel joy again (the hard stuff was still there, of course, but I haven’t felt real joy in so, so long – it’s hard to turn opportunities for it away when they present themselves). I kept pushing for another few weeks before I really had to take a break, both for my physical energy levels and my emotional energy levels; it was all getting too much. But exciting things are still happening, even as I try to slow the pace down a bit.