Posted on July 29, 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…

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.

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.

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.

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).

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.
Category: animals, anxiety, autism, chronic fatigue, chronic pain, emotions, event, family, favourites, heds, hydrotherapy, medication, meltdowns, mental health, music, pots, quotes, sleep, special interests, therapy, treatment, writing Tagged: 2023, activist, adhd, anna berry, anxiety, art, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic artist, back pain, ball pit, blog, blog writer, blog writing, breathing room, candi carpenter, cat, cats, christmas shopping, chronic pain, dehydration, demonology part 1 ep, dog, dopamine, dopamine land, duolingo, dutch, eds, ehlers danlos syndrome, emails, exhibition, family of cats, friend, friends, heat, heds, hydrotherapy, hyperfixation, hyperfocus, hypermobile ehlers danlos syndrome, immersive exhibition, immersive experience, infinity rooms, instagram, interview, language, lanterns, medication, meltdown, mental health, my cats, neurodivergence, neurodivergent, neurodiversity, pain, pain management, pain relief, phenelzine, physiotherapy, postural orthostatic tachycardia syndrome, pots, puppies, puppy, sensory experience, singer, singersongwriter, sleep, social media, songwriter, soothing, summer, taylor swift, tens, tens machine, therapy, tim minchin, trauma, volunteering, week in my life, writer, writing, yayoi kusama
Posted on May 14, 2023
TW: Discussions of depression, suicidal thoughts, self harm, dermatillomania, trichotillomania, negative thoughts about food, and mention of a school shooting.
So, after months and months of resisting, I’ve started taking Phenelzine again. I was deeply reluctant for a number of reasons; after all, just deciding to take it again (and it didn’t really feel like my choice but one imposed on me by external forces) was an excruciating process and took a lot of therapy, a lot of talking, and a lot of misery.
I really didn’t want to take it. I knew that I would objectively feel better but I also felt like it would change a lot of really important things about how I felt about the world and about myself and that scared me. There were also things that I knew it wouldn’t change so there seemed little point in trying to feel better. So my feelings about it were a mess and sorting through them felt like an impossible task. But I wanted to go to Nashville and Phenelzine felt like the only way that that was going to be even remotely possible (which I still believe to be true, having now done that trip to Nashville). Ultimately it felt like a choice between two miserable outcomes and a choice I didn’t know how to make. And even though I did take it – and am feeling objectively better – I still feel angry about it, about feeling like I had to take it.
For the sake of clarity, I started taking Phenelzine on 10th March 2023 and this post covers the first two months approximately, documenting the side effects and the benefits. I thought about cutting it in half, given how long it became, but ultimately, I think it’s more useful to keep all of this information in the same place. And, as always when talking about medication, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
WEEK 1 (15mg once a day)
Nothing changed in that first week. I was desperately depressed (most days I was too depressed to get out of bed) and consistently, deeply suicidal; I just felt completely hopeless. I self harmed that first week, driven largely by my complicated feeling about taking Phenelzine again.
I had no energy and was physically exhausted but somehow still made myself get up and go to both my hydrotherapy and therapy sessions (I think that that, more than anything, was a lack of will to fight what I was being told to do), although they did, of course, make me even more tired. I had no appetite but I didn’t have any interest in food anyway. I would’ve ignored it altogether but my Mum pushed me to eat something everyday; even that was a struggle though.
The plan was always to increase to twice a day after a week or so but given that I wasn’t feeling any change and time was running out (plus the very important factor that I’ve taken this medication multiple times before and so I have a lot of experience with it), when I asked my psychiatrist if I could move to the higher dose slightly earlier than planned, he agreed. So I started taking 15mg twice a day after only five days.
WEEK 2 (15mg twice a day)
Physically, I felt pretty awful. My sleep continued to be erratic and terrible; I had pretty much every form of bad sleep that you can have. I was constantly exhausted during the day and so drowsy that I struggled to do anything; there were days where I managed to get out of bed only to lie on the sofa.
At the beginning of the week, I was still feeling deeply suicidal. I felt overwhelmed and hopeless and was deliberately self sabotaging: I was desperately avoiding food wherever possible (and then constantly feeling like I wasn’t trying hard enough); continuing to isolate myself; pushing myself too hard in hydrotherapy; and so on. Over the course of the week, the nature of the suicidal thoughts and feelings changed a bit. At first, I wasn’t sure if I was still suicidal but then, when I thought about it for more than thirty seconds, I realised that I was: the fears that ultimately drive my suicidal thoughts and feelings were still there and still really, really big, leaving me so completely overwhelmed that living felt unbearable. I was also incredibly anxious (if I had to put a number on it, I’d say I was consistently in the top 5% of my – very wide – spectrum of anxiety). I was practically living on Diazepam (not a good idea, I know, but I was just trying to survive) and even with the help of that, I was suffering from significant physical symptoms, something that isn’t usually part of the anxiety experience for me: I was nauseous; I consistently felt like I couldn’t breathe and deep breaths felt physically impossible, like the air wasn’t going into my lungs but elsewhere somehow; I also had periods where I felt frighteningly short of breath; my throat felt so tight that swallowing felt like it took ten times the usual amount of effort, like I had to concentrate all of my energy just to get food down; I cried a lot, something I hadn’t done much of during what I’ve been describing as ‘my depression coma.’ The looming Nashville trip was a particularly intense source of anxiety; just thinking about it made me want to curl up so tightly that every bone broke or scream until I disappeared from existence. These sound like poetic ways of saying I was anxious but they are literal descriptions for the deeply visceral emotions I was trying to cope with.
I could most definitely feel the Phenelzine starting to work though: I managed to write some bits of songs on a few occasions, which was more than I’d been able to do for a long time up to that point; I started engaging with social media again, although it was in a limited capacity and I really struggled with it; I went back to bullet journalling and to do lists, having abandoned those months earlier; and so on. Having said that, all of those things also increased my anxiety about life and about bad things happening, making my suicidal thoughts even worse. Alongside those literal examples, I also felt like my brain was moving faster, having felt so sluggish for so long, but that didn’t necessarily mean that that activity was… desirable. My thoughts weren’t more organised, weren’t making me more productive. Everything was moving so fast that it often made me feel sick; my thoughts were chaotic, making them hard to keep track of and making it even harder to concentrate than it already was. It was exhausting. But I felt like the lights were slowly starting to come back on. It wasn’t bad exactly but it was more than a bit unsettling because I hadn’t really realised that the lights had gone off – figuratively speaking – despite how bad things were.
I wasn’t sure if I was experiencing any physical side effects, especially since I was already struggling with exhaustion, drowsiness, depression, and anxiety. But there were a few things that could’ve been side effects: a few moments of nausea so overwhelming that I had to lie down until they passed; I also kept finding that my mouth was really dry, that I was drinking a lot more than usual, but it wasn’t consistent enough to be sure it was a side effect. The first time I took Phenelzine, I struggled with something akin to manic episodes and although I didn’t experience that this time, there were definitely moments where some of those recognisable feelings and behaviours arose; one of those was talking compulsively, unable to shut up as hard as I tried. It was frustrating but it was at least familiar and so I knew it would pass; I just had to wait it out.
WEEK 3 (15mg twice a day)
The last few days before Nashville were brutal on both my brain and my body. I was unbearably anxious: I felt completely overwhelmed, to the point where I couldn’t concentrate on anything; I felt like I could barely breathe or swallow; I was near tears for days. I tried really hard in therapy, ending up in tears, but I still felt like the anxiety was tearing me apart. I think that was part of the reason my chronic pain flared up again, from my neck down to my hips, and the pain was constant, regardless of any medication I took. It was awful. Other than that, I continued having moments of intense nausea, sleeping erratically (and feeling deeply tired during the day), and feeling generally unwell. I was also desperately frustrated by what, at that point, was most certainly the side effect of a consistently dry mouth; I was so thirsty, I went from barely drinking anything to the equivalent of multiple bottles of water in a day.
During those few days though, I had a conversation with a close friend, one of the few I’d managed to stay in vaguely regular contact with (for the previous few months at least). We were talking about music and I found myself enthusing about it, to a point that took me by complete surprise. It was disconcerting to feel that passionate about anything after so long without feeling anything like that, anything that strong. The sudden emergence of this feeling really threw me: my identity suddenly felt incredibly unstable and I didn’t know who the real me was, the depressed person who was wrapped in layers of cotton wool misery or the person on Phenelzine who loves music more than anything. It was scary and confusing and made me feel very unsure of myself, of everything.

Halfway through that week, I flew out to Nashville, the trip my main motivation for going back to Phenelzine. The flight was about as straightforward as they can be and my first few days there were pretty quiet, physically at least. It gave me some time to recover, which was both much needed and much appreciated; I was exhausted and the jet lag was really rough. The chronic pain was ongoing and I struggled against a migraine-like headache. The dry mouth was persisting and I was drinking water like it was going out of style. My anxiety was at an all time high. Between the flight, arriving in Nashville, anticipating the ten (ish) days ahead, thinking about all of the things that could potentially go wrong… I was so anxious that I honestly felt like I was going to be sick. It was excruciating.
It also feels important to mention that it was in those first few days in Nashville that The Covenant School shooting occurred. I wrote more about this and my feelings about it in my Nashville post and it doesn’t feel like this is a suitable post to rehash those emotions but it was very distressing and I found myself hit with a sudden flood of feeling hopeless and upset and even more anxious.
WEEK 4 (15mg twice a day)
That week in Nashville was A LOT, on so many levels.
I never really got over the jet lag so I struggled with fatigue and exhaustion throughout the whole trip. I started out at tired and within a few days, I’d reached exhausted and I fought against that constant physical exhaustion from then on (until long after I got home). I tried to be strategic – avoiding and minimising the walking and standing where I could – but there was still more time on my feet, especially in queues than I could really handle (but we’ll come back to that). Because of the jet lag, I slept erratically at best and terribly at worst and I was so tired that there were multiple occasions where I just crashed on the sofa and slept for several hours during the day. By the end of the trip, I was struggling not to fall asleep in public places.
The walking around, queuing for shows, and the hours spent in uncomfortable chairs was an absolute nightmare on my body, leaving me stiff and sore for the whole trip. My chronic pain hadn’t been great before we left but this was a whole new level of pain, from my neck to the soles of my feet (but particularly my back and legs). I could barely move by the time I got into bed each night, my muscles screaming, and I spent a lot of time stretching out my back and warming the muscles with my portable electric blanket, trying to ease the pain a bit but my back was wrecked by the end of the trip. I was also hit by one of the excruciating, spasming pain attacks in my back that had me unable to move and screaming until it passed. I don’t experience them as often as I used to but they’re horrendous when they do happen. So, pain wise, it was a pretty miserable experience.
In regards to Phenelzine side effects, there was still only the one that I was sure of: I was still constantly thirsty. All I had to do was breathe through my mouth for ten seconds or so before my mouth was so dry that I could barely breathe, my breath catching in my throat. I was drinking so much water, bottles and bottles a day and I could’ve happily drunk more.
My anxiety was, for the most part, terrible, especially at the beginning. I was so anxious – there were times that I honestly felt like it was going to make me sick – and there was just so much uncertainty, plans constantly changing and unfooting me; it was almost impossible to feel settled (a feeling that I always have in Nashville). There were days where it wasn’t quite as bad though: the good managed to balance it out, I got settled in various ways that helped me cope better, and then there were times where I was just so overwhelmed that I couldn’t tell what I was feeling, whether I was feeling anything at all. With so much to feel, sometimes my mind just seemed to go blank, like a defence mechanism, like feeling it all would just be too much.
That’s not to say that there weren’t good moments and good feelings. I spent time with lovely people, went to amazing shows, caught up with old friends and made new ones… It was good, if a lot to process: it was more than I’d been doing for months crammed into a single week. I mean, I had my first ‘glowy’ moment – a moment where I feel like I’m glowing with pure joy – in longer than I can remember, which was very special; they’ve been hard fought for over the last eighteen months. I was giddy for the rest of the night. I also went to a party despite a tornado warning (the first of some potentially questionable decisions, but I hung out with lovely people and had a good time) so it may be that I was more impulsive than usual, something I’ve noticed before when starting Phenelzine (on both occasions); it’s kind of fun but also feels like my world is tilting back and forth wildly. I did enjoy myself but there were also moments where I felt like those feelings weren’t really landing, maybe because they felt so weird and disconcerting after being so deeply depressed for so long.
Emotionally, I was completely all of the place. As I said, it was just so much to process. And by the end of the trip, I was a complete mess. In some ways, I was desperate to go home but I was also really reluctant, both to leave and to return to normal life. I was confused and conflicted and anxious, which I can’t imagine was made clearer by the pain, exhaustion, and mess of feelings that the early stages of Phenelzine creates.
WEEK 5 (15mg twice a day)
The flight home was okay and I managed to sleep for most of it, although it wasn’t particularly restful. And sleeping with my legs bent the way I did meant that when I woke up and I tried to walk, the pain my knees was awful; it made me extra grateful for the Meet and Assist. I felt okay for a while but then the jet lag crept in and, no matter how hard I tried, I could not stay awake. I ended up sleeping on and off all day; I was just so tired and sleepy and overwhelmed by everything.

Getting back to normal was hard. The jet lag was just as brutal travelling this way and I was completely exhausted; I kept falling asleep during the day, which only made my sleep schedule worse and it wasn’t great to start with. I made myself go to therapy and hydrotherapy, both of which were good to do in their own right given the previous ten days but also helped to physically tire me out. The pain in my back was almost unbearable, making it impossible to do much (although, arguably, taking the time to rest wasn’t the worst thing I could’ve been doing). And I was still so, so thirsty.
After two weeks of chaotic busyness, I suddenly didn’t have anywhere to be or much to do and that left me feeling weirdly untethered and lost and anxious (although it was probably good for my physical recovery to have that quiet time). With Nashville over after thinking about it for so long, I felt low and depressed and empty; it was a combination, I think, of the adrenaline and what I call the ‘Nashville effect’ (I always find myself feeling lighter and more open and joyful, even with all of the anxiety and mental health stuff – it’s been there on every trip) wearing off and readjusting to normal life and all of the things that I had to engage with and get done. It all felt very hard. Having said that, I did manage a very complicated journey to and from London to spend a lovely evening with friends, which was really nice, if exhausting. But even with the good moments, I was feeling so anxious and depressed with the consistent background noise of suicidal thoughts. With all of that clawing at the inside of my head, I found myself reopening the recent cut on my face and ended up making it worse.
WEEK 6 (15mg twice a day)
I spent most of that week struggling with some kind of virus or something. What started out as a sore throat and a cough turned into sore ears, tender glands, and a painful cheek and jawbone. It was pretty miserable – I felt overwhelmed and sad and kept bursting into tears – but I took a test (and several more throughout the week) and at least it wasn’t COVID. On the worst day, I was suddenly overwhelmed by nausea, breaking out in a hot sweat, and I had to lie down until it passed because my ears rang whenever I stood up. I felt so rough and exhausted by it that I fell asleep and slept for most of the day. After that, I slowly got better although that still involved days of general unwellness.
Sleep was still a struggle, including one night where I only got two hours of sleep. Even when I slept reasonably, I was so tired and sleepy during the day, which made concentrating even harder than it is normally. The pain in my back continued, although the severity of it slowly dropped to a low level ache by the end of the week. The desperate thirst remained too; I was still drinking so much water, which I’m sure is good for me even if the cause is annoying.
By the end of the week, I was starting to do things again – not at a Nashville level or even a pre-depression coma level – but more so than I had felt able to over the previous eighteen months. I saw family, hung out with friends, worked on music projects, exhausted myself in therapy, and pushed myself hard at hydrotherapy, upping the intensity; my legs cramped and shook but it felt good, like I’d done something really productive. I’d found hydro getting easier over the previous couple of weeks and I wondered if it was the Phenelzine, whether it was somehow allowing me to feel stronger in my body and able to push it harder. It wouldn’t surprise me but it isn’t something I’ve felt when taking Phenelzine before.

An added complication was the cut on my face. Having opened it up at the end of the previous week, I suddenly couldn’t leave it alone, tearing at it with my fingernails and making it worse and worse; every time it started to heal, I opened it up again. As hard as I tried, I couldn’t stop, couldn’t rid myself of that anxious energy. After several days, I managed to divert it but I only ended up doing a different kind of damage, chewing away the callouses on my fingers from playing guitar; I was almost down to the next layer of skin, which really hurt. The urge to tear at my face, to chew my fingertips, to pull my hair was just relentless and however I tried to repress or redirect it, it remained just as strong and trying to resist it just felt like it took more energy than I had (I mean, it’s always felt like that but it felt like it had gotten worse). I’ve struggled with the urge to pull my hair or to self harm for years but for some reason unknown to me, it had suddenly gotten much worse and much more damaging. It could’ve been Phenelzine related (my hair pulling started around the time I first started taking Phenelzine, given the timing, but I don’t know if there’s a connection – there was a lot going on) but I don’t know.
WEEK 7 (15mg twice a day)
My sleep started to level out: I still had nights where I only got a couple of hours of sleep but I also started to have a few nights where I slept deeply and heavily, which I was grateful for. But despite those better nights, I was still always, always tired and so often sleepy during the day. There were days where I was too tired to do anything and my struggle with concentration only continued. The back pain was still present but at a much lower level than it had been during and immediately post Nashville. And whatever illness I’d had seemed to have passed; all that was left was what felt like a mild cold. The sniffing was boring but perfectly manageable. And the endless thirst was becoming more normal, if still annoying. So even though none of it was wonderful, I guess there were improvements on all fronts.
My anxiety and depression hadn’t been resolved as much as I would’ve hoped, as I remember from previous experiences with Phenelzine (although that could be me remembering it wrong). There was more in my brain than there had been previously: I was having good moments and good emotions, as well as just more emotions in general, so the depression wasn’t so aggressively front and centre anymore but it was still there, still heavy and miserable. I was still having suicidal thoughts pretty consistently too, like uncomfortable static in the background of everything; all of the huge, awful, terrifying things that happen in life just felt completely overwhelming and I don’t want to live through them. That’s really hard to not feel. I felt fragile and overwhelmed a lot of the time. I was just so anxious about all the things I had to do; I felt incapable of concentrating enough for any of them, which just made my procrastinating even worse. I worked hard in therapy, trying to figure out some really hard questions, and I just ended up feeling really overwhelmed by everything; being more engaged with the world, being ‘better,’ just felt really scary.
Having said all of that though, I did manage to do things. I had a very long, very social day; I had a long work meeting on Zoom (which I absolutely would not have been able to do pre-Phenelzine); I hung out with a friend; I worked on music stuff; I pushed myself really hard at hydrotherapy. Plus, I released my new single, ‘House on Fire,’ which was a big deal considering that, during my depression coma, I wasn’t able to engage with music at all. The day went well although it was stressful and exhausting too.
The whole hair pulling, chewing my fingers, tearing at my face situation was not good though. I just couldn’t stop; my face and fingers never allowed to heal. The cut on my face was only getting bigger and typing on my laptop or playing guitar was super painful. It was a mess and I had no idea how to fix it.
WEEK 8 (15mg twice a day)
My sleep wasn’t great but it wasn’t terrible. I had bad nights, broken sleep and waking up exhausted, but I also had decent nights too where I slept long and deep. But, regardless of how I slept, I was tired and sleepy throughout the day, often struggling to concentrate on whatever I was doing; the intensity fluctuated but they were constant. I also found going to bed difficult, so anxious that I procrastinated into the early hours of the morning. This seems to be my new normal, or at least on the spectrum that is my new normal.

I was having more and more productive days but I was still really struggling with my anxiety. I felt fragile and overwhelmed, anxious about everything that I needed to do and everything that was happening; it made concentrating extra hard and I ended up procrastinating quite a bit, especially with the harder things. All of the hard stuff was persistently on the peripheral too. I worked hard in therapy and hydrotherapy too, exhausting myself; I was getting out of the pool, breathing hard and legs shaking. The chronic pain hadn’t faded entirely but it was down to an almost ignorable level, which was probably the best it had been for a long time.
The damage I was doing to my hair and fingers and face was ongoing, although I discovered that covering the broken skin with plasters or gauze and creating a barrier between them and my fingernails did help, slowing the damage and actually allowing them to heal a bit. That did mean my hair bore the brunt of that panicky energy, which painful for my scalp, shoulder, and elbow. Every time I try to redirect that energy, it just seems to find another destructive form, never one that doesn’t do any damage. It’s a real struggle.
I didn’t intend for this post to get so very long but between Nashville and getting sick, I wasn’t sure if I was accurately representing my experience with Phenelzine. I’m never sure how interesting these posts are to read but I feel like the experiences of taking these medications are important to share, to document. I’ve never seen anyone talk about taking Phenelzine and I’ve had multiple people reach out to me to ask about it; all of the information out there seems to be purely factual. So I wanted to make this first hand account of it available for people to get a sense of it, even if it’s only my experience and only this time, my third time taking it. On the two occasions I’ve taken it previously, I didn’t write about it because, the first time, I didn’t have this blog and, the second time, I was so depressed that I couldn’t write. Long story short, here is my experience of taking Phenelzine (for the third time) and I hope that, for anyone about to take it or already taking it, this account is helpful and informative.
Over two months in and I still don’t feel great about Phenelzine (for all of the reasons that I didn’t want to start taking it originally), as much as I can recognise the objective benefits. And with those benefits in mind, with my anxiety and depression still very present, I think that I need to try a higher dose in order to get the most out of it. It was too much last time but I wasn’t trying to come back from such a bad place so maybe I just need a bit more help this time. I’m waiting to hear from my psychiatrist and then I guess we’ll see.
Category: adhd, anxiety, autism, chronic fatigue, chronic pain, depression, emotions, exercise, family, food, heds, hydrotherapy, identity, medication, mental health, music, self harm, sleep, special interests, suicide, therapy, treatment, trichotillomania Tagged: anxiety, appetite, asd, autism, autism spectrum disorder, autistic, autistic adult, bfrb, body focused repetitive behaviour, chronic fatigue, chronic pain, concentration, depression, dermotillomania, drowsiness, dry mouth, fatigue, hair pulling, hydrotherapy, illness, insomnia, jet lag, lack of appetite, loss of appetite, medication, medication review, mental illness, migraines, music, nashville, overwhelm, pain, phenelzine, self harm, self injury, side effect, side effects, singer, singersongwriter, skin picking, sleep, sleep problems, social anxiety, socialising, songwriting, stress, suicidal thoughts, therapy, travel, travel anxiety, trichotillomania
Posted on December 24, 2022
TW: Mentions of depression and suicidal thoughts.
I think it’s safe to say that this has been the worst year of my life. I’ve been so depressed and suicidal and that has just swallowed up the whole year. And feeling like that, it’s hard to access gratitude, even when you know that there are things to be grateful for. So I’m trying, according to my yearly tradition, to focus on the things that I know I’m grateful for, even if I can’t always feel it properly.
My Mum – What can I say, my Mum is amazing. So much of this year has been so awful and she’s been with me through all of it; she’s never given up, even when I kind of wish she would. She has been my champion. She’s the best and I honestly don’t know what I did to deserve her.
My family – I’m not sure what more I can say about my family, about how great they are. I have not been easy and my issues have taken up a lot of energy and yet, they have been there for me, supporting me in whatever way I needed at the time without judgement. There are so many different things I could write about, moments I could mention, but the most important thing to say is that I love them, more than I could possibly express.
The friends who’ve supported me – I am grateful for all of my friends but I wanted to give a special shout out to the friends who’ve been especially supportive over this last year. I’ve felt very alone and when friends reached out to me, it meant (and means) a lot. They didn’t necessarily do anything (although a few friends gave me gifts this year that I feel utterly undeserving of but am deeply grateful for nonetheless) but they sat with me in it, whether that meant actually talking about it all or watching TV together.
New friends – Despite the fact that I haven’t been out much this year, I have actually made some new friends this year, which has been nice. The pandemic hasn’t exactly been conducive to meeting new people and neither has my depression but the new friends that I have made, especially the ones that I have some quite heavy stuff in common with, have been a gift.
The connections that survived the pandemic – There were friends and acquaintances that I didn’t see for a long time because of the pandemic, several of those in Nashville for example, that I worried wouldn’t be the same after so long. Part of that is just my relentless anxiety that maybe no one actually likes me but part of that is also that everyone has a life, has their own stuff, and went through a trauma with the pandemic; I wasn’t sure if some of my relationships would survive all of that and I wouldn’t have held it against them if they hadn’t. But to my surprise and delight, many of these connections did survive the pandemic and even managed to grow over the year.
The cats – I don’t know what I’d do without my gorgeous cats; I really don’t. They’re adorable, they’re snuggly, they’re funny, they’re comforting… The list goes on. I feel very lucky to have them; there’s always one around to cuddle up with or make me smile. Lucy ushers me to bed when I stay up too late and keeps watch until she’s sure I won’t get up again. Tiger headbutts me until I stroke her and then she purrs like I’ve bestowed the greatest honour upon her. Mouse is slowly becoming more affectionate, having always been less sociable than her mother and her sibling, and has started seeking us out for strokes and cuddles. Sooty gets obviously impatient if I don’t make space for her on the sofa and then instantly settles down, stretched out and pressed up against me. Sweep appears and flops dramatically on top of her mother, like they’ve been separated for weeks (and, bless her, still struggles with the cat flap occasionally despite it having been there her whole life). They’re all the sweetest of little souls and I love them dearly.

Finding a private pool for hydrotherapy – It took many months and several attempts but we finally found a private pool that was a good fit for me to do my hydrotherapy exercises. Many of the preceding ‘failures’ didn’t allow me to do certain exercises or required travelling a fairly significant distance, so I am very pleased to have found such a gorgeous pool that has everything I need almost on my doorstep (plus the owners are lovely and their passion for decorating the pool for each holiday always makes me smile). When my routine is running smoothly, I manage to get there three times a week, which is great; sometimes it’s less than that but such is life. I’m doing my best here.

The fictional worlds I can escape into – One of my main coping mechanisms this year has been watching TV shows, old favourites mostly, and reading fanfiction and escaping into those familiar, comforting worlds. They’ve been both an escape and a relaxation technique. They give my thoughts somewhere safe to go when everything else, inside my brain and out in the world, doesn’t feel safe, when all of that stuff feels like a terrifying minefield. I’m grateful to have these worlds to lose myself in, even if only for a while.
When I feel like this, like I’m drowning in my depression with these near constant suicidal thoughts, things to be grateful for feel like a double edged sword. Sometimes they’re things that make me feel like I can keep hanging on, even if just for a little bit longer, and sometimes they feel like weights tied to my ankles, keeping me here when I desperately don’t want to be and I have to admit I resent them for that. So it’s anything but simple. It’s good and bad and hard and confusing; I can feel differently, ten different times in a day sometimes. But these are the objectively good things in my life and I can recognise that. I wanted to honour them for that.
Category: about me, animals, depression, exercise, family, favourites, mental health, suicide Tagged: 2022, animals, cats, depression, escapism, family, friends, grateful, gratitude, hydrotherapy, mother, mum, pets, suicidal, suicidal thoughts, swimming

Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.
Finding Hope