Posted on December 25, 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.

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.

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.

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.

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.

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.

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.”
Category: about me, animals, anxiety, autism, autism dog, book, chronic pain, depression, emotions, event, exercise, family, favourites, food, heds, hydrotherapy, mental health, music, school, special interests, therapy, treatment, video, writing Tagged: 2023, ableism, accessibility, actually autistic, actuallyautistic, adhd, alternative therapy, amanda tapping, anna berry, anxiety, anxiety disorder, asc, asd, attention deficit hyperactivity disorder, audhd, autism, autism service dog, autism spectrum condition, autism spectrum disorder, autistic, autistic artist, autistic burnout, birthday, books, breathing room, cat, cats, charity, charity swim, chronic pain, chronic suicidal thoughts, chronic suicidality, concert, cptsd, depression, disability, disabled, dog, duolingo, dutch, equine facilitated learning, eras tour, family, family of cats, fibromyalgia, friends, friendship, fundraising, gad, generalised anxiety disorder, grateful, gratitude, heds, horses, hydrotherapy, hypermobile ehlers danlos syndrome, hypermobility, installation, juneberry, language, laptop, learning, maisie peters, mental health, mental health charity, mental illness, mind, nashville, neurodivergent, new puppy, pain, pet, physiotherapy, pomchi, pomchi puppy, pride of cats, puppy, reading, red bull, service dog, sick stories, singer songwriter, singersongwriter, songwriter, songwriting, suicidal, suicidal ideation, suicidal thoughts, suicidal urges, swimming, taylor swift, tens, tens machine, thankful, the good witch, the good witch tour, therapist, therapy, tin pan south, travelling, trigger warning, tw, wedding, writing
Posted on June 26, 2023
It’s been a long time since I did a Week In My Life post but I thought they’d be fun to revisit. I don’t really have typical weeks anymore – every single one looks different with all of the different things I’m doing and experiencing – but I thought that might add to what makes them interesting; the format remains the same but the contents will always be completely different. This was a super busy week because, on the Monday morning after it ended, I was flying out to Germany so I had to get a lot of stuff done; there could be no putting it off and my ADHD brain did not like that. So it was stressful and busy and chaotic but there were also some really cool, fun, joyful moments too. So it was an interesting one to record.
The week in this post started on Monday 22nd May and ended on Sunday 28th May.
MONDAY
I was up at eight thirty and pretty much straight out to the hairdressers to have my hair coloured in preparation for going to Germany (I’d had it cut the week before). I find it takes several days to settle, for the sharp lines to soften and the colours to blend together nicely. I get so used to seeing it faded (because it’s expensive to get redone – I often top it up out of a box but needed it to look particularly nice on this occasion so didn’t) that seeing it fresh and bold is shocking, in the best way. I love it; it looks amazing every time and I can’t believe that I ever considered doing something different with it (apart from wanting blue hair because who doesn’t). It makes me feel so much more confident; it makes me feel like me.
Back home, I got stuck into some admin work. It took a lot of effort because my brain really didn’t want to do it but I got the necessary emails sent, submitted my Amanda Tapping story for her livestream (which I wrote about in my last post in case you missed it), did some diary catch up, and worked on several upcoming blog posts. I feel like there is never any time to breathe anymore, like I’m always only just keeping up so there isn’t even a moment to stop and think before moving onto the next thing. It’s really stressing me out.
When I had a brief look at social media, Twitter specifically, because of it being Mental Health Awareness Week, all I saw were the usual vague platitudes, corporate statements that didn’t mean anything, and pictures of the royals going to various events. The whole thing infuriated me and I started ranting, tweet after tweet until the thread was barely coherent and I nearly posted it but then I stopped and thought about what I was doing. The thoughts were rushed and frustrated, it’s so easy be taken out of context when you have so few characters, and Twitter can be a pretty toxic place. So I saved the tweets and resolved to elaborate on the thoughts in a better medium, like this blog (which I did and it turned into this post.)
I spent the evening packing since I was going to London the next day and then went to bed relatively early for me, around midnight. But unfortunately, I couldn’t sleep, despite doing everything that usually helps (a routine I have long since refined); I couldn’t seem to relax, my whole body shaking. I was still awake at four, practically vibrating with tension even as I tried to relax enough to sleep. I’ve had sleep paralysis before and it wasn’t that so I don’t know what was going on; I just kept finding my jaw clenched, my hands in fists, and even my toes curled. It was hideous and exhausting.
TUESDAY
I struggled up at nine thirty, got myself showered and dressed, and settled on the sofa with my laptop. I had some more admin work to do, more emails to send, and so I worked through that list before taking a break and scrolling through social media for a little bit. Then I spent several hours working on blog posts and an academic paper about Taylor Swift’s songwriting that I had to submit before I left for Germany; the paper itself was already written but I had a list of edits to work on plus two re-recordings and a new album to integrate into the existing relevant parts of the paper. I don’t mean to be so cryptic but I don’t want to talk too much about the specifics of it until there’s more certainty surrounding the project; it still feels very up in the air, to me at least. But maybe that’s just because it’s the first time I’ve done anything like this.
Mid-afternoon, I had therapy. I don’t want to get too deeply into what we talked about; that is very personal after all. But we did talk about all of the things I had to do before leaving for Germany, as well as how I was going to handle the trip to Germany itself. Sometimes my therapist brings a friend’s dog with her, which is always a bonus. I love her and she loves me and we have some great cuddles, which are very good for balancing out some of the hard stuff we talk about. But no such luck that day (it’s fine though – it’s not like I go for the dog). We finished on time and I managed to get to the station in time to catch my train. It isn’t a long journey but I filled the time, working on blog stuff. I had to make every minute count with so much to do before the week ended and I headed off to Germany.
I got off the train at Victoria station to a very strange sight. I’d paused several feet beyond the barrier to rearrange some of the stuff in my hands and pockets and saw a man standing with a wheelchair and a dog. As I stood there, he encouraged the dog into the wheelchair and it jumped up, turning around and sitting down like it knew exactly what to do. And then, out of his pocket, this man pulled a lizard – a bearded dragon, maybe – and placed it on the dog’s back. Again, it was like both of these animals had done this a hundred times and knew exactly what they were supposed to do. And off they all went, the man pushing the two of them in the wheelchair. It was so surreal to witness. I got the rest of my stuff rearranged and headed for the tube station, fascinated that nobody else seemed to have found this a strange moment to be present for. But then it is London, I guess; everyone is very ‘stay in your lane.’ The whole situation was just so bizarre and I was very aware that I was probably watching something that I’d never see again.
Usually I stay with one of my parents when I do an overnight in London but she already had someone staying so there wasn’t room for me. I ended up staying with family friends – as did my Mum actually since she was was working in a school in London, starting early the next morning – which was really nice because I hadn’t seen them for ages. So it was really nice to catch up. We were all tired and had early starts so we didn’t last long (and had to create a schedule to get everyone in and out of the bathroom in order for everyone to leave on time, which I don’t think I’ve had to do since I was a teenager in secondary school). It took me a while to decompress and go to sleep but it was still quite early by my standards, thank goodness.
WEDNESDAY
I had to get up at half six to get ready, which is most definitely the earliest I’ve had to get up in years. I had a shower, got ready, had some breakfast, and headed for the underground. An organisation I’m a part of, The F List, which supports female and gender minority researchers in music research, particularly research that supports gender equality in music and music research was holding an event, The F List Gender in Music 2nd Annual Research Hub Conference, at my university and I was keen to learn as much as possible – my brain finds learning new things positively addictive, something that I don’t think is uncommon for people with ADHD – even if I was a bit nervous about how long I could stay focussed for. But fortunately that wasn’t too bad and they’d made accommodations for anyone who needed them, although they were very neurodivergent sounding accommodations (as it turned out, there were so many neurodivergent people there that I was starting to wonder if we were all members of the club). As they said on their website: “The F-List Research Hub aims to expand and better introduce the existing feminist and interdisciplinary collective of researchers, dedicated to evidence-led activism which aims to create an environment in which women and gender expansive people in the music industries will be able to more successfully start and sustain their music careers for longer.” And the theme was ‘identity’: “Identity is a central theme in feminist research, which sees ‘who we are’ intimately entangled with ‘what we research.’ The definition above is deliberately broad and (we hope) inclusive to all who seek to research gender issues in music.“
They ended up asking me to write the blog post for the event, which was really exciting. I would be taking notes all day anyway so I just added some extra notes about how the event worked, how everyone socialised, how things felt, in order to sum up the day accurately. We came up with a plan for what the blog would focus on and how long it would be and I played around with it in my head as I listened to the speeches and presentations.
Professor Sophie Daniels, one of the directors of The F List, the head of the songwriting program at ICMP, and my tutor for years, gave the keynote speech, which was really cool. This is what I wrote for the F-List blog because I’m not sure I could say it better: “After a bit of mingling, the day began with the Keynote speech from Professor Sophie Daniels, where she discussed, amongst other things, her career in the music industry, her founding of the songwriting program at ICMP, her artist project, Liberty’s Mother, and it’s associated advocacy work, as well as her research into why we write songs. I first met Sophie in 2014 and she was my teacher on and off for seven years while I studied at ICMP; so while I knew much of what she was sharing, it was really insightful to hear it presented this way, through the lens of feminism, particularly in the music industry and music education. Sophie has always inspired and supported me – as a songwriter, an artist, a researcher, a mental health and Autism advocate, and, ultimately, as a person – and so it was very special to watch her give the Keynote speech.” And it was: it was really special. I will never get tired of hearing ‘I Can Love You From Here.’ It makes my heart ache now just as it did when I first heard it eight years ago.
It was a lot of information but the presentations were short, about fifteen minutes each, which was the perfect length for my ADHD brain and each one was really interesting; I don’t know if it’s the neurodivergent brain but learning new things is always fun for me. The topics ranged from Trans and Non-binary inclusion in the music industry to support for those with ADHD in the music industry to exploring black feminism in the music industry to investigating the interwar generation of women composers at the Royal College of Music, as well as a conversation with the CEO of the Independent Society of Musicians. At one point, she talked about how badly the arts are treated and how they’re so important because they give life meaning: “They lie at the heart of what it means to be a human being.”
Oh, and I greatly enjoyed being introduced to this song…
I found all of it interesting – I really did – (although I did need some time in the quiet space because it was a lot of information and a lot of noise) but I think I was most engaged by the presentations on support for neurodivergent individuals in the music industry, by the one on the emerging trends in the careers of women in the music industry, and the one investigating the interwar generation of women composers at the Royal College of Music. I did wonder whether my Granny would actually be part of that group but when I worked it out, I realised that she wouldn’t have enrolled until after the end of the period of study. It would’ve been so bizarre if her name had appeared in that research.
When the presentations finished, we congregated in the attached cafe to socialise and network, which turned into a commemoration Tina Turner dance party, which was a fun if bizarre way to end the day. It was hard to leave: it was such a nice group of people plus I was dreading the long journey home. But it was a good day; I learned a lot, I fell into some really cool opportunities, and spent time with friends, old and new.
I did eventually make my way to the station and catch a train home. My Mum very kindly picked me up – I was beyond exhausted from so much standing and socialising and focussing all day – and when I got home, I went straight to bed. I had a look at social media for a while, decompressing from the outside world, before going to sleep around one, which isn’t bad for me at the moment.
One of the opportunities that came out of the day was the chance to do the write up – a blog post – of the day. You can find that here.
THURSDAY
I spent most of Thursday at my laptop, working on my Taylor Swift paper. I was really on a roll; I felt like the Kermit the Frog at a typewriter meme. I had already been writing and making progress with it but I hadn’t really managed to get on a roll until that morning and having finally hit my stride, I was having a blast. I was expanding on ideas already present in the paper and building in new ones; the only problem was that I was just increasing the word count and the task of cutting it down was looming. But I was enjoying the fun parts while they lasted and I vaguely resented being interrupted when I had to go out.
It’s been a really long time since I had my last appointment with my psychiatrist, although we’ve stayed in touch. He was in a new office – with a gorgeous view of both the Downs and the sea – and it was much nicer than the last one, which had felt incredibly medical and sterile. I like this one a lot more. And, in the waiting room, there was a painting that I instantly fell in love with: a seascape by a local artist called Sara Hill. I would love to own something like this, to get to look at it everyday. It was completely gorgeous and I found it very soothing to look at, which I suppose is fitting for a psychiatric office.

The appointment went well. My psychiatrist and I talked through my experience with the Phenelzine and what has improved and what’s still a struggle. I’d wanted to discuss increasing the dosage, which we did. It had been too much last time – I felt very overstimulated all of the time – but I thought that, given that I’ve been trying to climb out of a deeper, darker place, a higher dose might be what I needed to make it that extra distance. We talked through that idea – and how much I want to write more again, which I just haven’t been able to – and he agreed. And, proving how well he knows me after all of this time, he suggested we judge the effectiveness by how much I’m writing. Sounds good to me.
Back home, I tried to re-harness my previous focus on my paper and while it wasn’t quite as effective, I did manage to get another good chunk of work done. I even had some time to do a bit of blog writing since I doubted I’d have much time to write while in Germany, I needed to have something prepared for the Saturday at the end of the trip. By the time I went to bed, I was completely exhausted and my brain felt vaguely like I’d put it in the microwave for too long.
FRIDAY
Despite going to bed so late, I was able to drag myself up early for a very important Zoom call. I don’t want to talk about who it was with and what it was about yet, not until things are more certain. But it was a very exciting call and, all being well, some awesome life things will come out of it. That’s all I’ll say for now.
I didn’t have long until my next Zoom call so I spent about ninety minutes or so working on blog stuff. I just needed some decompression time and I find blog post writing very soothing for some reason; I think it just allows my brain to turn over an idea, over and over and over until it makes sense, and getting the words into a satisfying rhythm.
I had a really nice Zoom call with one of my best friends and we ended up talking for about two hours. We can talk about anything, from movies to the really big stuff in our lives, and we can talk for days without needing a break; we can just go off on these tangents that go on for hours and then we eventually backtrack to our original conversation topic, only to go off on another tangent. We have a lot in common and we have so much fun together. At one point, we tried to figure out how we became friends – having met on the MA – but we couldn’t: it seems that we both thought we were already friends and just skipped the whole ‘becoming friends’ part of the friendship, which is actually pretty on brand for us now that we are really good friends. I have no idea if that makes any sense but that’s how it is.
We hung up so that I could get ready and go to therapy. Again, I don’t really want to talk in detail about what we discussed but, in general, we talked about going to Germany, the things I was anxious about, and how I might manage them. I wasn’t feeling too stressed (which turned out to be ridiculous because I found the whole trip incredibly stressful) so it wasn’t too bad.
When I came out of therapy and checked my phone, I saw that Taylor Swift had made an announcement, the release of Midnights (The Late Night Edition) and the new song, ‘You’re Losing Me.’ Someone had already shared it online. Had the song been released somewhere where I could listen to it legally where Taylor would get paid for my purchase or stream, I absolutely would’ve done so – I’ve always felt very passionate about that – but since it’s only available on a CD one can buy at tour dates, I don’t feel bad listening to it online. And what a song it is; it immediately joined my 2023 in Songs post because I love it so much, especially the lyrics. I’ve talked about it more there (I’ll add the link when that post goes up in December) but the ongoing medical imagery is heartbreaking, the way the bridge just keeps building is one of my favourite Taylor techniques, and the imagery in the lyrics all had me absolutely hooked (I particularly love “Remember lookin’ at this room, we loved it ’cause of the light / Now, I just sit in the dark and wonder if it’s time,” “And I wouldn’t marry me either / A pathological people pleaser / Who only wanted you to see her,” and “Do something, babe, say something / Lose something, babe, risk something / Choose something, babe, I got nothing / To believe / Unless you’re choosin’ me / You’re losin’ me”). It’s a gorgeous, gorgeous song and weeks later, I’m still listening to it over and over. So that was a moment to have missed because of therapy.
Back home, I went back to working on my paper. One of my parents stopped in for dinner and we had a good catch up before I got back to work. Then I had some decompression time, writing more of my Mental Health Awareness Week blog post before going to bed.
SATURDAY
I spent the morning working on my paper before catching a train to London. I used the trip to keep writing and then navigated the tube system to get to the Thin Air exhibition at The Beams near London City Airport. And it was absolutely stunning…
The exhibition was made up of several different rooms, designed by different artists or artistic collaborations. I didn’t like all of them but of the ones I liked, I absolutely loved:
It was really cool and I’m really glad we got to see it before it closed (while we were in Germany). I would’ve stayed longer if I could’ve but I still had so much to do and they do encourage you to keep moving through the rooms.
Then it was back on the train home and even though I was exhausted, I continued working on the paper and on the upcoming blog posts. I also managed to reply to some of the messages I’d been unintentionally procrastinating over, accidentally pushing them back in favour of getting more work done. So that felt like an achievement too. I was pretty much getting things done out of sheer willpower – something that absolutely does not always work but did this time for some reason – which I was very relieved by. Of course, so pleased to be on a successful streak and unwilling to break it, I ended up going to bed much too late.
SUNDAY
It was a very goal focussed day. I managed to get my blog post of the week – So That Was #MentalHealthAwarenessWeek… – done and published relatively early in the day and then I moved on to the piece about The F List conference. I had all of my notes from the actual day and I’d been making notes since then: thoughts that felt important to include, anecdotes that would make it more personal, and so on. I got that done mid afternoon, I think, and sent it off (they really liked it and it was published and shared a few days later).
Afternoon and evening, I packed for Germany. I was going to be there for a week but I am a terrible packer – I just find it really hard. I wonder if that’s an ADHD thing, given that it’s an organisation and planning based skill. Interesting; I’d never thought of that. I don’t know but possibly. I’ll have to do some research. Anyway, as I said, I’m a really bad packer (I once packed for five weeks in Australia two hours before I left for the airport – the dread and procrastination were so bad) so I struggled through that as a task. Eventually I got that done, with probably much more than I’d need.
I spent the rest of the evening trying to finish my Taylor paper. This edit was essentially finished – apart from one section, which I couldn’t work on until I got some of the literature they’d promised to send me (and now have sent me) – but it was way over the word limit and, as hard as I tried, I couldn’t get it down without cutting out significant parts of whatever point I was making or the evidence for it. But I kept trying and trying and trying, as well as tidying the whole thing up. In the end, around two in the morning, I decided that I would send it as it was and ask the organisers – all of them accomplished academics – for their advice on the word count. I’ve never done this before but they have; hopefully they can help me get it down to the required length without compromising the content on the next edit. So I stopped at two and went to bed, my laptop on the bedside table so that I could send it first thing in the morning.
It was a very anxious week: there was the pressure of trying to get everything done, the unknowns of the conference, and the anxieties around going to Germany. It was hard. But it’s also really nice to be productive again, to be working and producing, even if my mental health and neurodivergence do make that a struggle sometimes; over the last couple of years, I’ve been so paralysed by my mental health problems – by my depression and anxiety specifically – that I’ve barely been able to do anything. So just to do things at all, let alone the amount of things I’ve been doing, is kind of amazing to me.
Category: adhd, anxiety, autism, body image, book, depression, emotions, family, medication, mental health, music, research, sleep, special interests, therapy, treatment, university, writing Tagged: a week in my life, academia, academic, academic research, adhd, amanda tapping, art, art exhibition, art installation, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, blog, blog writing, body image, conference, dosage, dose increase, exhibition, friend, friends, friendship, gender in music, germany, hair, hair colour, hair dye, hairdressers, immersive art, insomnia, installation, liberty's mother, light art, light installation, livestream, london, medication, medication increase, mental health, mental health awareness, mental health awareness campaign, mental health awareness week, mental health awareness week 2023, mhaw, mhaw 2023, midnights, midnights 3am version, midnights album, midnights album late night album, neurodivergence, neurodivergent, neurodiverse, neurodiversity, packing, pain, phenelzine, psychiatrist, psychiatry, rerecording, rerecordings, research, research conference, research paper, sleep, social media, songwriting, sophie alagna, sophie daniels, sound art, taylor swift, tension, the beams, the f list, therapy, thin air, travel, travelling, week in my life, wiml, writing, you're losing me, zoom
Posted on June 10, 2023
Back in 2018, I wrote a post about travelling as an autistic person and my personal tips for making it smoother and less stressful and anxiety-inducing. In that post, I included:
I still stand by all of these strategies but since then, having travelled more and gained more experience (apart from the lockdown and pandemic times – the latter of which we are arguably still in but obviously travel is now more possible for many, many people), I have more thoughts that I thought might be helpful to share.
FIND A GOOD TRAVEL AGENT – I wrote about talking to a travel agent last time but I wanted to share my personal experience with our travel agent, a guy we first met when we travelled to the US in 2016. Since then, we’ve booked every trip we’ve taken with his help – we go to him for everything – and developed a solid relationship. It really helps, I think, that he has a working knowledge and understanding of Autism so, even though he didn’t know me and my struggles personally, he picked up what I could and couldn’t handle very quickly, which has made things so much smoother than they might’ve been otherwise. He always goes above and beyond for us, something I would attribute to the working relationship we’ve built with him, and I so, so appreciate it.
TAKE INSPIRATION FROM YOUR MOST EXTREME NEEDS WHEN YOU PACK – It’s easy to optimistically assume that you’ll have a normal day every day you’re away but that’s not only unlikely because our minds and bodies don’t cooperate just because we want them to but also because the stress and anxiety of travelling and being in a new, unfamiliar place can do a number on us. I always find being away from home for more than a few days incredibly stressful, which can screw up my energy, my pain, my anxiety, my sensory issues… So packing with bad days in mind is probably a good idea; I’ve started carrying my heat pad (for pain), my joint supports (which I don’t always need but, of course, always seem to need when I’ve left them at home), a number of different fidget toys, medication for migraines (not a super common occurrence but debilitating when they do happen) and so on…
LEARN SOME BASIC PHRASES – If you’re planning to go somewhere where the language is different to that of your home country, it’s definitely worth learning at least a few common phrases. I know this is often considered to be common courtesy and I don’t disagree but when you have a lot of health stuff to deal with or get really overwhelmed in new environments, it’s not that simple; with all of your other preparations, it can just slip down the priority list and then off the list altogether. I recently went to Germany and between the ridiculously long hours trying to get everything done before I left and then the total overwhelm when I got there, I somehow didn’t clock that I didn’t speak any German until a couple of days in. How bizarre is that?! Then, of course, I panicked and did my best to speed learn words and phrases like, “Yes, please,” “No, thank you,” “English please,” “Excuse me,” and “I’m sorry.” Fortunately for me, German isn’t completely alien and the spellings and pronunciations – at least for the simple stuff – are relatively close, or at least they felt that way in my brain. So I picked those up easily, which was a relief. I think that having some language can really reduce your anxiety because you don’t feel so lost (and potentially helpless) and it makes moving around and engaging with where you are a little easier.
ASSISTANCE SERVICES AT THE AIRPORT – I’ve now done multiple trips through airports where we’ve arranged for the assistance services to help us out. So now I get wheeled (in a wheelchair or one of those electric buggies) from check out to not just the gate but down the gangplank to the actual plane. Because I struggle with standing and walking for extended periods of time, this has not only reduced both my pain and fatigue, it’s also reduced my anxiety about the time it takes and the recovery time I’ll need later. Apart from a few mix ups (uncommon but it has happened), they’ve been super efficient and very nice. I’ve found a couple of them to be a bit intimidating but I think that’s just because they’re utterly focussed on the job (and the next one and the next one); no one has ever been anything but polite and even funny. On my recent trip to Germany, one of the women was really, really nice and we had a good laugh despite the language hurdles to navigate. The one confusion that I’ve experienced is that, at some airports (and always in the US), they operate on a tip system but no one’s ever told us that one way or the other. Maybe it’s the straightforward, autistic approach to things but, to me, a service provided by the airport implies that the airport pays them for the work they’re doing but clearly not. So that did take me by surprise and I haven’t always been prepared for that, financially or emotionally.
IF YOU’RE TRAVELLING FOR A SPECIFIC EVENT, FAMILIARISE YOURSELF WITH WHERE YOU ARE AND WHERE YOU NEED TO BE – If you’re travelling for an event like a wedding or a birthday, it’s well worth doing things like checking out and practising the route (or routes you’ll have to travel) so that you know how to get where you’re going and how long it will take. You don’t want to be stressing about being late or getting lost on the important day itself. And if you have to let go of everything else just to make sure that you can attend and engage with the event you’re there for, then that’s what you need to do; it’s hard not to feel guilty or upset about not ‘taking advantage’ of the opportunities that travelling has presented you with but most likely, if you’ve travelled for a particular event, it’s really important to you and has to be your priority. Chances are that you’ll feel better for putting it first.
HYDRATE – If I have learned anything over the last few years, it is how important it is to stay hydrated. We all know this, of course – we’re told often enough that none of us are drinking enough water – but autistic individuals often struggle with it specifically due to problems with our interoception (plus, thirst signals are generally weaker than other internal signals, making them harder to recognise). Being dehydrated can make everything so much harder, causing headaches and exhaustion to name a few, and when you’re away in an unfamiliar place, that’s the last thing you want.
IF YOU HAVE TO GO HOME EARLY, THAT’S OKAY – Sometimes shit happens and plans have to change. And that has to be okay. Whether it’s your physical health, your mental health, something going on at home, sometimes you just have to figure out how to accept the need for change and go home. Sometimes it’s a case of choosing the ‘lesser of two evils’ – staying is hard but so is leaving – and making the choice that feels the most right, even if both of them feel wrong to a certain extent. I usually need some time to come to terms with what the right decision is but then, once I know what I need to do, I just have to figure out how to make it happen.
Friedrichshafen in Germany: Lake Constance (known as Bodensee in German) and some gorgeous flowers I saw. (x)
As always, I feel sure that I’ve missed some. But hopefully these will be somewhat helpful to somebody. If any of you guys have any tips you’d like to share, please stick them in the comments!
Category: anxiety, autism, chronic fatigue, chronic pain, emotions, event, holidays, medication, mental health, tips Tagged: accessibility, actuallyautistic, airport, airport assistance, anxiety, anxiety disorder, asd, assistance, autism, autism awareness, autism resources, autism spectrum disorder, autism tips, autistic, autistic adult, chronic fatigue, chronic illness, chronic pain, dehydration, event, flying, holiday, home, language, meet and assist, mental health, mental illness, packing, tips, travel, travel agent, travel tips, travelling

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