Grateful 2023

TW: Mentions of depression and suicidal thoughts.

This has been a fucking hard year and there were multiple moments when I wasn’t sure I’d make it to this point; I’m not convinced I’m glad that I have. My anxiety and depression and chronic suicidal thoughts have been doing their best to swallow me whole; several people have suggested that I’m in autistic burnout and I wouldn’t be surprised but I don’t know how to be sure of that with the depression and CPTSD in play. I’m just putting one foot in front of the other, even when I’m not really sure why.

It’s somewhat confusing to still recognise the good things and be grateful for them in amongst all of that. While I never thought depression and suicidal ideation were simple, I never would’ve imagined that they could be this confusing and conflicted. But that’s a train of thought and discussion for another time. For now, these are some of the things I’ve felt grateful for this year…


Mum – I don’t know what else I can say about my Mum that I haven’t already said in my previous Grateful posts (2017, 2018, 2019, 2020, 2021, 2022) but, holy shit, am I grateful for her. Something I’ve thought a lot about over the course of the year is how she always seems to take things in stride. I know it’s not that simple: she’s human and so, of course, she has feelings about everything that happens but the way she handles things with such openness and grace blows me away.

Family and friends – Despite how hard this year has been and how desperately I’ve wanted to just hide away, I’ve managed to spend a surprising amount of time with my family and friends: over Zoom, at music events, at each others homes, even abroad. I honestly don’t know how I got so lucky to find and keep the friends I have but I am so deeply, deeply grateful. I look back at all of the bad things that have happened to me and I find that can’t hate them completely because, if they hadn’t, I wouldn’t have met and become friends with the people I have.

The cats – My gorgeous pride of cats. I love them all so dearly. We’ve had some health scares this year, which have been very scary but, fortunately, everyone has recovered and we’re celebrating Christmas as a healthy family. Izzy has thrown a spanner in the works to a certain degree and the peace of the house has been disturbed dramatically; we’re still finding a new normal and all of these new relationships are still evolving. On the whole, the cats are still avoiding Izzy because she gets so overexcited; she just wants to play but often, that either scares them or they don’t understand and so they take a swipe at her. It’s slow going and although progress is being made, I miss the cats being around and struggle with the frustration of just wanting everything to be okay and peaceful right now. I love them and I don’t like not seeing them as much.

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My time and friends in Nashville – My trip to Nashville this year was a serious emotional rollercoaster. There was a school shooting in the city on the first full day we were there; I saw some of the most amazing Tin Pan South shows I’ve ever seen; I became a Madeline Edwards fan; I saw some of my lovely friends; I hung out with new friends; we weathered the edge of a tornado (and had a little party in the motel room we were sheltering in; I got to go to Song Suffragettes’ 9th anniversary show and catch up with the lovely Natalie Hemby; I struggled with some serious chronic pain… It was a lot to take in, a lot to process. It was a really tough trip but the good moments were really good and I am grateful for those.

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My therapist (and the dogs that joined our sessions) – It’s been just over a year since I started seeing my new therapist and, if I’m honest, I’m still getting used to her and all the little differences. I saw my previous therapist for eight years and the loss of her from my life was a trauma so it’s not surprising to me that it’s been a really difficult adjustment; I still miss her and our sessions. My new therapist is good and I really like her and we’ve had some really productive sessions but it’s been a very different scenario: my mental health has never been so bad, the worst stuff so close to the surface. That makes therapy really fucking hard. It makes me feel triggered; it makes me feel like a frayed nerve; it makes me feel like I can’t breathe. It’s exhausting. But I know that nothing will change if I don’t go. Part of my experience of depression means that I don’t always want things to change but, as I said earlier, it’s such a confusing, messy, complicated well of feelings that it’s hard to articulate and this certainly isn’t the post to get into it, but it does provide some context as to why therapy is so hard. I can’t seem to clearly explain why I’m grateful for therapy and for my therapist, not with my headspace being the way it is right now, bit I know that I am. Sometimes I think that has to be enough.

The puppies – Over the summer, I got to spend a solid amount of time with a litter of four Pomchi puppies and it was glorious. One of them in particular, the only girl who was nicknamed ‘Skye,’ took to me straight away: it was like she saw me and went, “You. You’re my person.” It was adorable and I loved every second that I got to spend with her. I hadn’t thought I was ready to bond with another dog but Skye showed me that I was (and honestly, the name ‘Skye’ just felt like a sign – one of my biggest special interest characters, Daisy Johnson, having chosen that name for herself before she discovered who she was, who she was supposed to be) and it was such a joy. And then my heart was broken when I wasn’t able to keep her. I was devastated and the pain of it really shook me. I worried about her endlessly and although that has faded over time, it still hits me now and then; I hope she’s safe and happy and loved. And even though it ended in utter heartbreak and a lot of bad feeling, I wouldn’t take it back; it was a really special experience and showed me that I was ready to have a dog in my life again and ultimately lead to Izzy.

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Writing songs again – Songwriting has been a difficult for a while now, as it usually is when my depression gets bad (and it’s been the worst it’s ever been). It feels like my creative brain goes into hibernation. Since I started taking Phenelzine again in March, things have gotten better in that regard. I’ve been writing again but it doesn’t feel as fast or as easy as it used to; like it takes actual physical effort to make my brain work when it used to come really easily. So it’s definitely not perfect but I’ve written some songs I’m really proud of and I’m grateful for that.

Getting to reunite with my friends from university – In the Spring, I went to Germany for the wedding of two of my friends and although there lots of stressful aspects to the week away, there were some truly joyful moments too and one of them was seeing some of my wonderful friends. Because we’re scattered around the world, we don’t often get to see each other and we rarely get to see each other altogether and, with COVID of course, it’s been an even longer time than planned so that was really special. It was really emotional too, more so than I’d expected, but then it was a very emotional week.

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There’s five of us buried in this huddle.

Acceptance into the Service Dog program – A few years ago, we applied for the Autism service dog program but they didn’t have space for me. This year we applied again and I’ve been accepted! The process from being accepted to actually getting a dog is a long one but that’s okay: it gives me time to get used to it and to learn everything I need to know, with the assurance that support is coming. I’ve met quite a few people who are part of the organisation and they’ve all been so lovely and supportive and warm so I feel like I’m in good hands. I have my anxieties about it – it’s a big responsibility to take on a dog, particularly a specially trained one, and I’m aware that, by having one, I’m representing the organisation and, to a certain degree, disability and neurodivergence – but I think it would naïve and irresponsible not to. So I’m doing my best to prepare and to get into a healthy, balanced headspace about it.

Breathing Room – After years of loving the work known as ‘Breathing Room’ by Anna Berry, I finally got to see it. First in London and then in Croydon. Finally seeing it in real life was magical; it was utterly breathtaking. During each visit, I spent ages just sitting inside it, watching the cones flutter and listening to the gentle creak of the machinery. It was so calming; I could’ve sat there forever. And it had my mind spinning with new ideas for songs, both specifically about the piece and for other songs. I loved that. Both times, I had to all but be dragged out.

The London experience was also incredibly special because I got to help construct it before it opened to the public. It was a viciously hot, airless day (which resulted in a very stupid-looking sunburn, which unfortunately didn’t fade for months) and even with the gloves, I got some pretty nasty splinters that had my fingers stinging for days but I loved every second of it. I loved the repetitive movement, the soothing count, the intense concentration that had the rest of the world fading to nothing. I’d been in excruciating pain and I did struggle with my back during the session but I would’ve happily kept going; I only left because I had a prior commitment. I loved it and it was a really special thing to get to do. I also, by some magical serendipity, got to meet Anna herself and talk with her briefly about my love for the project and the idea of writing a song about it. She was really lovely and it was a very cool cherry on top to the day.

Discovering Maisie Peters – I’ve listened to Maisie a little, on and off, over the years but I think I just felt like I never quite had the brain space to really get into her music. But then I heard ‘Lost The Breakup’ and I was completely hooked. I played it on repeat until The Good Witch came out and then I was just obsessed; I didn’t listen to anything else for weeks and even when I did start listening to other stuff, I still often returned to it. I can’t quite explain what was so magical about it or why it resonated with me so strongly but it really did and I’m still completely obsessed with Maisie’s songwriting; I could talk about it for hours. I’d love to write with her. I also got to see her twice on tour and they were both really special shows: I saw her in Bristol on Halloween at the smallest venue of the tour and I saw her headline at Wembley, the biggest venue of the tour and a real milestone, at the end of the UK leg. She’s a fantastic performer and I absolutely loved the shows. I was also lucky enough to go to the VIP pre-show acoustic sessions and those were really, really special. I have a Week In My Life post half done about that week that I hope to get up soon where I talk more about that so I’ll come back and link it here – it was an exhausting week that took a long time to recover from but it was absolutely, 100% worth it. I saw her perform at the Communion Xmas Party too and got to talk to her briefly afterwards too, which was really lovely (her keys player, Tina, too). It was definitely my Maisie Peters season and long may it continue; I’m so glad to have her music in my life.

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Listening to The Good Witch, making bracelets for the tour, dressing Izzy up as the song, ‘BSC,’ Maisie’s acoustic set in Bristol, the Halloween stop of The Good Witch Tour, the acoustic set at Wembley Arena, Maisie’s sold out show at Wembley Arena, Maisie performing at the Communion Xmas Party in London, and meeting her after she performed. 

Getting a TENS machine – Given how bad my chronic pain has been this year, getting a TENS machine was a revelation. It has been so helpful and I’m so very grateful to have a way to reduce my pain when it’s really bad. I don’t know how I didn’t come across it sooner but I’m so thankful for the recommendation from my GP (who is an actual miracle worker).

Meeting Amanda Tapping at LFCC 2023 – Amanda Tapping is one of my favourite people in the world and has been since I was about fourteen. She’s played some incredible roles that have inspired me deeply and she is a truly wonderful human being. I met her several years ago and although I was almost paralysed by anxiety, she was so kind and open and it was a really special experience. This year she started doing livestreams with The Companion and it was so, so nice to see her again, regardless of the fact that she couldn’t see me. The livestream was great and I looked forward to the promised future ones. Then, in the summer, I went to my first Comic Con and got to meet her again in person. We had such a lovely conversation – as did she and my Mum, who was with me as my disability support person – and it’s a memory that I will always hold close and keep safe; it was a very special experience. And then, my third Amanda Tapping moment of the year was the second livestream, which was great on its own, but I also had a ‘backstage’ ticket and I was able to talk to her briefly afterwards. She’s so open to big, honest, vulnerable conversations and it feels like she really sees you and hears you when you talk and that’s such a powerful feeling; I remember thinking about that after I met her the first time and it was exactly the same this time. She, and the characters she’s played, have been a constant source of inspiration and strength for me and stumbling across her all those years ago was such a fluke but, my god, I’m so grateful I did.

Getting The ERAS Tour Tickets – Even though, it was incredibly, sickeningly stressful (and caused a fair amount of ableism-based trauma), I am very grateful to have gotten tickets to The Eras Tour in the summer – and not only one but multiple times, since several friends and groups of friends wanted to go and wanted to go with me. That felt very special and I’m both grateful that we were able to get the tickets and that I have been able to afford it, having been saving since The reputation Tour ended. I have a very complicated relationship with the future and with looking ahead but it was a huge relief to know that I wouldn’t have to watch the every show happening without being there even once. So I’m grateful for that. And, as always, I’m just grateful for Taylor herself: for her music, for being a person I can look up to, and for the inspiration and opportunities she has given me.

The Disability-Focussed Writing Workshop run by Sick Stories – I discovered this online workshop on Eventbrite and from the first one I attended, I had an absolute blast. Sophie, the host, is absolutely lovely and the prompts always led me down interesting rabbit roles. The first prompt Sophie suggested resulted in an idea for a novel that I would love to write at some point, my love of writing fiction returning that immediately. The fact that it was disability-focussed, along with Sophie’s excellent hosting, made it feel like a really safe and fun place to explore and share ideas that might’ve otherwise felt too personal and vulnerable, leaving all of the amazing pieces of writing I heard unwritten. I love a lot of the stuff I wrote in those sessions and although I don’t yet have anything to do with them, I hope that I will at some point find a way to share them.

Discovering Juneberry Red Bull – Among my family and friends, my Red Bull consumption is somewhat legendary, despite the fact that it seems to give my no caffeine hit whatsoever (I think I’m still living in denial that one day it will start helping again). But it had kind of waned… until I tried the new summer flavours. The other three didn’t do anything for me but this one has me in a chokehold: I love it so much. I would drink it all day if it wasn’t as unhealthy as Red Bull obviously is. But it’s a nice little treat that I’m very pleased they came up with.

Being able to afford a new laptop when my old one died – My laptop was dying a slow and painful death and, given that I use it for most of my work, that was a very stressful position to be in. But, thanks primarily to disability benefit, I was able to buy a new one and while that was obviously great for work reasons, it’s the first time I’ve had a brand new laptop in a long time so that was very exciting. I love shiny, new gadgets and, since they’re usually very expensive, I don’t get to do the whole “oh my god, a shiny, new gadget!” thing very often.

Nimona – Watching the film, Nimona, was a really emotional moment for me. I loved the story and the world and the animation style and the humour but the character of Nimona really resonated with me. I really related to her and saw a lot of myself in her: her feelings of otherness, her self loathing, her masking – there were so many parallels to being autistic. Seeing that was very moving. And I really, really related to her in her ‘monster’ form. *SPOILERS* The scene below is constantly on my mind and that scream has me in tears every single time: that is what it sounds like in my head, in my soul. That is what it feels like to be me. Being able to point at that and say to someone, “That’s how it feels,” has been so emotional. It’s hard to describe but I’m so, so grateful to have this film. It might mean more to me than any other film, specifically because of this sequence.

Swimming, hydrotherapy, and starting physiotherapy – For most of the year, I’ve kept to a pretty solid schedule with my swimming and hydrotherapy and then, halfway through the year, I met with an amazing physiotherapist and have been pretty consistently working at that too. Having now worked with both a hydrotherapist and physiotherapist who really understand hEDS, I can say with absolute confidence that it is a completely different experience; I’ve worked with good people before but that lack of understanding has always been a major obstacle and I’d find myself burning out and giving up. I’ve always loved to swim but I’ve found that I can really love hydrotherapy and physiotherapy (although I have had some periods of pain so bad that I had to take a break until it faded). We’ve found two really lovely pools to swim in, which makes it even more enjoyable, and I’ve made some real physical improvements. That’s been kind of mind blowing – to actually see that happen. And to the point where I was able to swim 5km for Mind! But more on that in a minute.

Izzy – I still can’t quite believe that I got a puppy this year, that I actually have a puppy now. That’s definitely not something I expected at the beginning of the year; it was probably the last thing I expected. But here we are and I’m madly in love with her. Izzy is a golden Pomchi (half Pomeranian half Chihuahua) and she’s utterly gorgeous: she’s soft and warm and snuggly and amazingly smart. The bond we’re building is already so strong and so special and that means so much to me, even though it’s kicked up some hard stuff. But I want nothing more to love and protect her and she seems to feel the same, guarding me at almost all times and trying to lick away my tears when I’m sad and looking to me when she’s distressed. My relationship with Lucky was incredibly special and always will be but, just as I learned after my first cat was put too sleep and we then got Lucy, I can love another animal and not feeling like the new relationship is replacing the old one. This relationship is new and special in its own ways and I feel lucky and honoured to have a puppy to pour all of that love into.

Getting to fundraise for Mind – Getting to fundraise for Mind felt really, really special, not just because we managed to raise so much more money than I’d expected (over £600 compared to my goal of £200) which was amazing, but because I was finally physically capable of doing it. I swam 5km for Mind, 1km a night over seven nights, partly due to managing my hEDS and partly do the logistics of pool time, but I was really proud of finding a way to make it work. I was exhausted and sore afterwards but it was absolutely worth it. I was so impressed and so touched by the generosity of everyone who donated it and I was so proud of myself for committing to it and competing it. I look forward to doing something similar at some point.

Spending my birthday with horses – My birthdays have been a source of stress for quite a long time now so I’ve taken to either ignoring it completely or trying to find something un-birthday-like but still special to do. And this year, I found myself going on a wellbeing course that centred around horses. I’ve always loved horses so, while the confidence building stuff was hard, it was so nice to spend time with these gorgeous animals again. It was a really cool, interesting way to spend the day.

The excellent books I’ve read this year – I worked really hard to get back into reading this year and I read a lot of really good books. The ones that have most moved and inspired me are Trista Mateer’s poetry, Blythe Baird’s poetry, The Anthropocene Reviewed by John Green, and Tomorrow and Tomorrow and Tomorrow by Gabrielle Zevin. All of these books had a really profound effect on me and they’ve all become so special, each a little piece of my personal creative and artistic mosaic. I don’t know why I picked them up when I did but I’m so thankful that I did.

A year of Duolingo – It’s hard to believe that I’ve now been learning Dutch for over a year. It’s hard to believe how far I’ve come. But I have and I have. It’s so strange to me: I hated learning languages at school but I’ve loved learning Dutch. There are plenty of obvious reasons for why I hated it at school but they’re not really worth dwelling on at this point but I had no idea when I started learning through Duolingo just how much I would love it, how restful I’d find it, how much fun I’d have. I had no idea that learning a language could be such an enjoyable experience – could be enjoyable at all – after my school experiences and it’s even inspired me to think about other languages. But one thing at a time. I love learning Dutch and I feel no need to change the way I’m currently doing things. I don’t know why I thought to download the app that day but I’m really glad I did and I’m proud of myself for opening it and practicing every day since.

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As I’ve repeatedly said, to call my feelings a mess is the understatement of the year. I was re-reading my post from last year and I don’t know if I can describe gratitude amidst depression and suicidal thoughts any better than I did then: “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.”

Dopamine Land: A Multisensory Experience

Over the summer, I was able to go (twice!) to this cool, immersive exhibition called Dopamine Land: “Dopamine Land is a multisensory experience that combines media, technology and play in one place. It’s an interactive museum made up of colourful installations that channel the limitless imagination of your inner child into reality. Take a break from your everyday life, have some fun, take some photos and boost your happy emotions!” (x) It’s made up of, I think, eleven rooms, each with a different artistic and sensory-stimulating environment inside. Some of them I absolutely loved, some of them I simply enjoyed, and some that I actively struggled with. But I loved the experience, first with my Mum and then with a friend of mine who also has ADHD (something which I do think made it a slightly different experience, although I’m not sure I could clearly explain why).

Before you enter the exhibition, there are two signs on the wall, explaining what dopamine is and how their rooms boost it, which I found super interesting: “Here at Dopamine Land we aim to trigger a gentle release of Dopamine in each of the spaces in different ways as you travel through the gallery. But what is dopamine? Dopamine is a chemical released in the brain that makes you feel. It is responsible for allowing you to feel pleasure, satisfaction, and motivation. A dopamine ‘reward’ can be caused by many pleasant experiences, including eating nice food, feeling loved, winning a game, and earning money, and having the right amount of dopamine is important both for your body and your brain. When you feel good that you have achieved something, it’s because you have a surge of dopamine in the brain.” and “How do the spaces trigger dopamine? There are many different types of triggers for dopamine, across all your senses, and each individual will experience dopamine in different ways. Therefore we have designed the experience to go through a variety of types of spaces, from energetic, to nostalgic, to meditative rooms. You may feel joy in a childhood memory, or from a wonderful aroma. You may experience a warmth from visually satisfying images, or a creative moment may trigger your feel-good hormone. Or perhaps a mesmerising, calming environment is best for you to find your happy place.”

There will be major spoilers in this post so, if you want to go and want to be surprised by the experience, don’t read any further because I will be talking about the different rooms and the fun little details and basically the whole experience. However, if you’re interested, please read on…


The first room (I forgot to take a photo of its name and description) was deeply reminiscent of Yayoi Kusama’s Infinity Rooms, which I always completely adored so I loved that room and just wished I could’ve stayed longer (it was one of the few that had a time limit)…

As I said in my Week In My Life post a few weeks back, I can’t really explain why I love this environment so much. There’s just something about it that makes my brain feel so right and joyful, like a symphony finally in harmony (that metaphor just flowed out as I was writing and it really took me by surprise – it’s a very apt metaphor given that my brain often feels very noisy). It is deeply pleasing on a sensory level in a way that I rarely experience.

I also forgot to take a photo of the sign outside this room with the name and description of it but I’ll do my best to explain it. There were square panels in the floor throughout the room and when you stepped on one, it changed colour. It’s a bit disconcerting though because they look like there is just endless space below, like you could fall through it and just keep going. My friend and I had a good time though, trying to step on different ones and getting the colours to sync up. Yes, we’re actual children…

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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 looked like different textures. The explanation outside read: “Let your mind immerse you into an infinite dreamscape and allow your imagination to fly free. This space explores the concept of ASMR content (Auto Sensory Meridian Response): something that evokes light and pleasurable tingles, sparkles, fuzziness or waves of relaxation in the neck, spine, and body.” I’ve never been a huge fan of ASMR but I loved this room. It was definitely one of my favourites; I could’ve watched it all day. It was definitely the room I spent the most time in. It was just gorgeous and oddly compelling and as I said when I talked about it before, I didn’t just want to touch it – I wanted to live inside of it. I tried to find out who designed and created it but when I contacted Dopamine Land to ask, they said that they didn’t give out that information. It seems unfair to me, that the artists aren’t getting clear credit for the work that they’ve done.

I honestly couldn’t choose a favourite moment of it; I loved the whole thing.

The Writing Room wasn’t a favourite but I thought it was kind of cool, although I would’ve put it at the end for people to write about their Dopamine Land experiences if they wanted to: “Pause for reflection and give a moment for gratitude. Tell us what makes you full of lust, love, and laughter, tell us what you’re grateful for or what you dream of. Write a note to yourself, recalling a feel-good moment of joy, the warmth of love, or perhaps something a little more primal. Post it to yourself in one of the post boxes, or leave it for others to enjoy.”

These were my messages that I left tucked into various corners.

The next room, Creating Calm, was pretty nostalgic, with fridge magnet words to rearrange and lights for shadow puppets: “Let’s get busy and create something! Brash, bold, thoughtful, creative, artistic, or beautifully silly; all creations welcome here! A creative act can focus the mind due to its calming effects on the brain and body, releasing dopamine, a natural antidepressant. It is also thought that higher dopamine levels drive our motivation to explore and boost creativity. So let’s get making!”

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I find shadow puppets all but impossible to do but it was fun to watch other people try and I had fun with the fridge magnet words. I like how, when the word you want isn’t available, you have to take the sentence in a different direction, usually ending up with something you never expected. Sometimes it ends up being nonsense but sometimes it ends up being really cool.

The next room was the ball pit but I forgot to take a picture for the explanation. Having said that, I think it’s safe to say that a ball pit turns everyone into a kid; there’s something very nostalgic about them and I couldn’t help but laugh hysterically as I ended up flailing around like an idiot when I couldn’t get back up again. It wasn’t at the top of my favourites list but there’s something wonderfully childlike about flopping into a big container of plastic balls and burying yourself in them until not even your face is visible; it’s just so joyful.

That one was probably the hardest on my back though, when the pain was bad. The whole thing wasn’t great for my back pain but I was wearing a brace and the support was a life-saver. I wasn’t pain-free but between the brace and my industrial strength painkillers, I was just about coping (a favourite coming up was the perfect antidote to all the standing and throwing myself into the ball pit). As I said, the ball pit was the most painful and I did regret my enthusiasm a little afterwards; the strain it put on my back was just a bit too much.

Another of my absolute favourites was called Fire Lantern: “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 cultures 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 beautiful and I was absolutely mesmerised by the space, by staring up at the lanterns as I lay on the big bean bags on the floor. The quiet – just the low voices of the other people talking as they lay on their own bean bags – was really soothing and I honestly could’ve stayed there all day. It would’ve been easily done too because time seemed to move differently in there. I’d love a space like that in my house, just to decompress in. I don’t think that’s gonna happen though.

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I was so excited to see it a second time and it was nice to start with but then two different families arrived with their kids, none of whom could’ve been older than ten, and they were running around the room and shouting and dragging the bean bags from place to place and it just completely ruined the gentle atmosphere. It was really disappointing.

The penultimate room, Keep Calm, looked like an abstract forest: “When dopamine is released it can produce a reaction where you feel calm yet also energised. Experience an immersive digital nature; a forest of the surreal! A natural space of great calm and beauty conjured through lights, mirrors, and the scent of natural wood, yet contrasted by hard lines, creating a shifting, shimmering, layered forest.” It was weird but beautiful and reminded me of wandering through the woods as a kid.

It wasn’t at the top of my list but I did really like it; it was very soothing. But then, again during my second visit, the families with kids ruined that. The kids were running around and shrieking and kicking up the wood chips covering the ground, sending them spraying in our direction. It was deeply frustrating, and more so that their parents didn’t seem to care that they were disrupting the experience for everyone else.

The final room, apart from the social space on the way out, was called Pillow Fight! and the explanation outside read: “The penultimate stop on our voyage. Release your inhibitions and dance in the eye of the storm! Euphoria will wash over you as the energy levels are raised. Take the pillows, giggle and release some tension as you return to your childhood, and settle some old scores in a friendly pillow fight.”

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It looked super cool and I liked the idea but the music was so loud – too loud. It was overwhelming. Even the people I went with, neither of whom are autistic, found it unbearably loud. It was just too much so we didn’t linger long in that room either time. That was a shame because it looked amazing and I loved the idea of a pillow fight. But I just couldn’t handle the noise.

The last space was The Bubble Bar where you could get drinks and snacks, named to fit the theme of the exhibition. Around the room, there were little corners with what were essentially cute photo opportunities.

Some of them were fun but we didn’t spend very long there. I can’t speak for anyone else but I was still holding the special moments close and didn’t really want to hang around, letting them dilute in a halfway space before leaving. I understand the appeal of finishing the exhibition with an opportunity to sit and eat and drink but it wasn’t for me.


Apart from the annoying kids during the second visit, both experiences were really cool and I really enjoyed it as an exhibition. So many of the rooms just made my dopamine-deprived brain really happy and that was really special. I think my only qualm was that we don’t get to know who created each room; I’d love to know what they go on to do.

Seeking Help For Chronic Pain (Year Two)

TW: Mentions of being suicidal. 

Year two of dealing with chronic pain. Since it’s Bone and Joint Week, I thought it seemed timely to update this series, although hEDS isn’t bone related. But whatever. I needed to post this at some point and my joints hurt so this seemed as good a time as ever.

Unfortunately, very little changed during the second year. I was incredibly depressed, to the point where I was periods of being consistently suicidal, so I wasn’t capable of much. But we were also waiting for the Pain Clinic to get in touch as they’d promised to.

This post spans from April 2022 to March 2023.


OCTOBER 2022

After finally getting the referral to the NHS Hydrotherapy Department in December 2021, I tried to work that into my routine to get some exercise, strengthen my painful joints, and just improve my quality of living. It was pretty hit and miss for a while (as my post about it reflects) but around August, I found a pool that allowed me to do all of the assigned exercises and managed to work out a schedule. From that point on, I was going at least twice a week, if not more, and I could really feel the difference.

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I wasn’t pain-free by any stretch of the imagination though; I was in enough pain to significantly disrupt my life at least 50% of the time (and a lot of the time it was still there, even if it wasn’t upsetting my day-to-day life). I was getting stronger, with more stability, but still with no word from the Pain Clinic on how to manage or, dear god, get rid of the pain.


Into 2023 and we still hadn’t heard anything. I was working hard at hydro and I could feel the difference – I was stronger and I enjoyed the exercise – but I was still in pain a lot of the time. We’d asked my GP to chase up the Pain Clinic but not heard anything from either of them.