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 February 22, 2020
On the 29th January 2020, we said goodbye to our beloved dog, Lucky, whom we’d had for nearly sixteen years. This is hard to write about – that’s why it’s taken so long for me to write and post it – but I felt like it would be a dishonour to him to not write about him so this is a piece about his life, how much we loved him, and how much we miss him. I’m not going to lie: I’m already crying as I write this so fair warning that this will be an emotional piece. It’s going to jump around a bit but I’ll try and keep it roughly in chronological order.
We first met Lucky when he was two or three days old. I was pretty young – only nine years old – so I don’t remember how we found out about the litter of Labrador puppies that needed homes but we’d been talking about getting a dog for a long time. In fact, it was one of the reasons we moved from London to Brighton. We didn’t want to have a dog in London. As it turned out, we lived all but next to a park and the puppies were on the other side.
Holding such a young puppy is a magical experience. They’re all sleepy and soft and they have too much skin. Plus, they smell amazing. I’ve never understood the whole baby smell thing but puppy smell is just wonderful to me. I don’t know if the puppy I first held was Lucky but I like to think so. And there’s no way for any of us to know.
We spent the next eight or nine weeks visiting them, playing with them and bonding with them. There was certain ones that had already been claimed and we ended up with the runt. Lucky, our beautiful, little runt. He was so funny looking as he grew. He was all disproportional: he had a long body with short legs, a big head, and a squished up face (don’t worry – he ended up proportional and I may be biased but I think he turned out to be the most handsome of the litter). But we thought he was gorgeous and loved him from the moment we knew he was ours. It was great to be surrounded by puppies, playing together and chasing and chewing each other, but we were just entranced by our baby and spent every possible moment with him.
Eventually they were ready to leave, eating solid food and mostly house trained. I remember the first night: he spent a lot of time exploring his new home (he was only allowed downstairs, giving our cat, Snubby, the upstairs floors to escape from him if she needed a break) and then fell asleep and we let him sleep on the sofa. He wasn’t going to be allowed to do that but we figured it was a special occasion. It was so cute. He was still so, so small. Then we put him to bed and went to bed ourselves. He cried all night, suddenly alone for the first time in his life. We all ended sitting on the top landing, out of his sight, desperate to go to him but knowing that it was the right thing to do. It’s what you have to do.
As I mentioned, we already had a cat, Snubby. She wasn’t a particularly social cat at the best of the times and she was deeply disgusted by this enthusiastic, bouncy… thing. She mainly stayed upstairs for the first few months but when she had to get anywhere near him, she’d swipe at him, leaving him bewildered as to why she didn’t want to play or at least engage. But she wanted nothing to do with him. Over time, she became a bit more relaxed around him (i.e. less swiping) but she never did anything more than coexist with him.

We got to straight to work with the training. He was really smart. We continued with the house training, sit, stay, drop (the toy, stick, whatever he was holding)… he never quite grasped that one. Or wanted to grasp that one. He loved to bring you things; he just didn’t like to actually let you have them.
One of my favourite memories of training him though, was teaching him his name. In various combinations, we’d go down to the woods where there was a somewhat closed off path (meaning he couldn’t really go anywhere but down the path) and stand about ten metres apart. We’d call his name, again and again, and he’d run back and forth, rewarded with treats. We probably spent hours doing that and eventually he learned that his name was Lucky.
Season after season, we’d walk through woods, over fields, by the sea… Because of school, Mum working from home, and what turned out to be my Autism and Chronic Fatigue, Mum did most of the big walks but I still managed some of them. My favourite ones were in the summer, flinging balls for Lucky and he’d run so fast that he’d overtake them, sometimes tripping over his own legs. The woods and the fields… they were all especially magical at golden hour. Those are my favourite memories of walking him.
He also loved to swim, which was very helpful when he developed a problem with his elbow and needed hydrotherapy. Labradors are notorious for problems with arthritis so we knew that it was something we were going to have to deal with during his life (thank god we insured him: he had so many medical problems throughout his life). Anyway, he loved hydrotherapy. He would chase a toy around a small pool of warm water and the hydrotherapist would actually have to hold him back to stop him exerting himself (the jacket is a flotation jacket so he could focus on swimming and not on keeping himself afloat). He absolutely loved it and it really helped his elbow.

One of my family’s yearly traditions is spending a week in Norfolk, usually in the autumn. We’d stay in a cottage and then a caravan closer to the beach and we’d walk through the woods and through the sand dunes. It’s one of my favourite places. I step onto that beach and it’s like I’ve found something I didn’t realise I was looking for. It’s magical.
Lucky has always loved it, from the lounging on the caravan deck to chasing sticks into the sea. As he got older, he managed less and less until he was basically just chilling on the deck with the odd walk around the caravan. But during our last trip together, we drove to the flattest beach and walked slowly out to the shallows. We paddled together and rolled the tennis ball that Lucky had picked up somewhere back and forth. We were very aware that this could be the last time so we took our time and tried to enjoy every second. Then we slowly walked back, stopping multiple times for Lucky to rest his legs. There was a sadness to the day but we tried to just live in that precise moment and having said all of that, I look back on that day and smile because I know Lucky was happy.
There were years of love, years and years of love. I wish I could describe all the details but we’d be here until Christmas. Longer. For a long time, my morning routine began with a shower and walking the dog at about 7am. That was my day and it was a good way to start the day. I missed it when life changed, even though the early start was early.
When Snubby was put to sleep in 2014, me and Lucky got even closer. He’d stick close to me and greet me with great enthusiasm whenever I came home from uni. He was always very sensitive and in tune with people’s emotions (the older he got, the more sensitive he got until he even had to leave the room when people on TV got upset). We spent a lot of time that winter, curled up in front of the TV together, warmed by the fire. It was very comforting.
About a year after Snubby was put to sleep, we got a new kitten, Lucy. My world just didn’t make sense without a cat in it. And Lucky’s reaction was so funny. You could almost see him rolling his eyes. I tried to make sure I still spent a good amount of time with Lucky, just the two of us. But I could almost see the ‘are you fucking kidding me?’ look in his eyes.
Hilariously, Lucy adored Lucky and wouldn’t leave him alone. She always wanted to play, bringing him toys and pouncing on him and so on. It was so cute. And he didn’t know what to do with that because he’d only ever known a cat that swiped at him. So it took him a long time to adjust. I don’t think he ever loved her the way she loved him but he tolerated her and her love of him. She was always in his bed, both when he was in it and when he wasn’t, and she even went on his evening walk around the block with him. It was adorable.

Once the elbow issue had been resolved, he didn’t need hydrotherapy again for a long time. But then, as he got older and his muscles in his legs started to weaken and waste away, we went back to hydro. He loved it and would swim so hard that the hydrotherapist had trouble monitoring the extensions of each of his legs. Over time, he slowed down, content to get to the ball; he knew it would be there when he got there. We continued liked that for years, managing the muscles in his legs. As an older dog, we couldn’t build the muscles back up but we could keep him going, keep him as strong as possible. And he loved it. And I loved watching him do it because you could see how happy he was.
As I said in my Birthday Rules post, for my 24th birthday, I actually got to do it with him once, which was a really special experience. It was really hard work and there was a lot to concentrate on, but it was surprisingly therapeutic for me as well as him. We both fell asleep on our respective soft surfaces when we got home and could barely make it through the day. It was funny to think that I was experiencing what he experience every time he had a hydro session. It was a really cool way to spend my birthday.
Moving house changed things, as much as I wish it hadn’t. The living room was upstairs and having spent his whole life being told he wasn’t allowed upstairs (plus his rather dodgy legs – he was about fourteen at the time), it was a difficult adjustment. He did eventually make sense of it and join us upstairs, in the living room (where I spend most of my time), which made me so happy.
He was making his way upstairs quite easily until one evening when everything changed. I was sitting at the kitchen table when I looked up and saw that Lucky was tilting his head almost ninety degrees. I thought he was having a stroke. Mum drove him to the emergency vet and they said he would be okay but I wasn’t convinced. The next morning we took him to our usual vet and he was diagnosed with Geriatric Vestibular Disease, so he was essentially having constant vertigo. Poor baby.
The next couple of weeks were very stressful as he was treated and slowly recovered. He did eventually recover but he was never quite the same. Personality wise he was, but physically, he had deteriorated quite dramatically. His balance was awful and was until the end and his legs, especially his back legs, were very weak and kind of like they weren’t completely within his control. From that point on, he needed a harness so that we could help him up when he was lying down, as well as up and down the stairs into the kitchen. Plus his head remained tilted for the rest of his life. That always made me sad. It’s something you never think you’ll miss: your dog looking at you straight on. I really, really missed it.

Interestingly, he became much more attached to my Mum after this experience. Apparently that’s not uncommon: for a pet to become particularly attached to one person after a traumatic experience like a period of serious illness. The hydrotherapist said she’s seen it happen a lot. He always wanted to be with her and couldn’t settle if she was absent, for ten minutes or a couple of days. It was quite distressing, not to be able to soothe him.
As I’ve already said, his legs were very weak. I got home a few weeks ago and he couldn’t stand. And whatever I did, I couldn’t get him on his feet. It’s like his back legs had given up. It was like he’d give up, like he was done. Like it was just too hard. It was horrible. I ricocheted between calm and rational and then terrified and frozen. I don’t think I can write any more about that night but in the morning, the decision had been made – as I’d expected – that he was going to be put to sleep. I knew it was coming and I knew it was coming then. I was expending every ounce of energy holding everything together. I felt like I was literally holding the pieces of the outer shell of my body together, and therefore holding all of the overwhelming emotions inside. I managed it for the most part, although a few tears escaped on occasion.

We got him to the vet and stood around him, stroking him, as the vet gave him a series of injections and then he was gone. But this was different to my last experience, different to when Snubby was put to sleep. I held her in my arms as they injected the drugs and I still remember the moment she was gone. But it was like Lucky was already gone (god, this is horrible to write). That thought was a sickening, awful one but that’s how it felt.
They left us alone with him to have a few moments but when it was time to leave, I had Mum get someone to be with him. I just couldn’t leave him alone. I couldn’t do it, even though it wasn’t really him anymore. At least that’s what people say. I’m not sure what I truly believe about that. Anyway, we stood outside the vet (they let us deal with everything later) – the four of us – and cried. And cried. And cried.
We went home and I spent the day collating photos of Lucky because I needed to have something to do that related to him. I needed to hold onto him. And now we’re moving forward, physically at least. I don’t think we’re moving forward emotionally yet. I don’t like the idea of ‘yet’.
We’ve since had a card from the vet with his paw print and a little packet of forget-me-not seeds, which I personally really appreciate. That was really kind of them and it’s already really special to me. We’ll have to decide where to plant the seeds but personally I like the idea of doing it where we can see them. Through the kitchen doors, maybe.
Soon we’ll get his ashes and have to decide what to do with them too. One idea is to scatter them where we taught him his name. I like that idea. But it has to be unanimous and we haven’t made a decision yet. We don’t even have the ashes yet so there’s no point worrying about it just yet. We’ll figure it out.
As a soul, he was a bit of a legend. Everyone who knew him loved him, even people who weren’t that keen on dogs. He just had some magic in him. I love him more than I can ever express and I will miss him for the rest of my life. The house feels empty and there’s a big gap that actually feels tangible in our lives. I have moments of calm and acceptance and then suddenly I remember and the bottom drops out of my world. It’s awful. And I just want to cry all the time, about Lucky but also about anything and everything. I’m just so sad. My body – my universe – is just so full of sadness. I just can’t believe I’ll never see him again. I’ll never stroke the brown patch on his nose or stroke the softest ears in the world. And when I automatically glance downstairs as I move around the house he’s NOT THERE and it just doesn’t make sense. It just doesn’t make any sense. It’s awful; I think anyone who’s ever lost a pet can relate to this.
I was talking to a friend the other day and they said that he lived a good life. And this friend wasn’t wrong. But when I think about it, I think the more important part is that he lived a loved life. And he did. He lived a very loved life.

Posted on November 16, 2017
The last post was a heavy one with lots of emotional stuff in it so I thought I’d go for something that was a bit more light hearted this time – try and maintain a kind of balance. So here we go. The animals in my life have had a really big impact on my mental health so I thought I’d introduce them and talk a bit about the positives of having pets when you struggle with mental illness.
This is Lucky, our thirteen-year-old Labrador. We first met him when he was two days old and we’ve had him since he was about eight weeks old. He’s endlessly friendly and enthusiastic. One of my favourite things about him is how unashamedly excited he gets about everything: people arriving, food (even though it’s the same thing everyday), any kind of attention. It’s a good little reminder to appreciate the good things, even if they are everyday occurrences. As he’s gotten older, he’s become very sensitive, especially to people’s emotions. At it’s most extreme, he’s left the room when people on TV get upset. Poor boy. I can relate to that.
And this is Lucy, my two-year-old cat. She’s all energy and adventure, in the daylight hours anyway. Come the evening, she’s very happy to curl up on my bed with me. She sort of reminds me of a teenager that doesn’t want to be seen with her parents because it isn’t cool but once there’s no one around, she enjoys a good cuddle. She loves Lucky and often tags along on the evening walk around the block. I absolutely adore her. She’s incredibly calming to watch and play with; she’s so present and that’s really good for my anxiety. And having her sleeping beside me helps me to sleep because I can focus on her breathing (and purring) and block out any anxiety I have.
She also had kittens last year, which was a great holiday from real life. They were gorgeous and when I was watching them or playing with them, everything else fell away. It was like the world outside my bedroom didn’t exist. They were the only thing that helped me when Christina Grimmie was killed. I’d been watching her videos for years and she was the same age as me; it was very upsetting (and I’m still dealing with the emotions of that but I’ll save that for another post). Watching them play and wrestle and explore my bedroom with such focus and such fearlessness was very soothing. I’m so grateful to have had them for that period of my life. And I was very aware that, as one of the few humans in their lives, I was affecting who they would become, consciously or not. It made me feel like I was making a difference, even if it was only on a small scale.
But back to Lucky and Lucy. They frequently accompany me to therapy (although not together). Neither are actual therapy pets but having one of them with me often helps, especially when we’re talking about really tough stuff. They can be a distraction, a tension diffuser, a comfort.
So there you have it: my animals. They are so important to me and have such an impact on my life that I couldn’t not write about them. I hope you enjoyed this and if you need me, I’ll be curled up with either or both of them.

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