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.”

Changing Therapist

TW: Mentions of self harm and suicidal thoughts and urges.

It’s been a year since I started therapy again after an unintentional break, essentially starting again with a new therapist. It’s been a hard and emotional process, and at times a distressing one; just going to therapy can make you feel so vulnerable and so open to further hurt as you dig into the hard stuff – wading into dark waters that you’d rather ignore and pretend don’t exist, even as they’re eroding your mental health – that adding difficulties to that already difficult thing can feel unfairly cruel. So, given that I’m me, I thought that, perhaps, writing about it might be helpful and maybe not just for me but for anyone going through a similar transition. And if not helpful, then hopefully validating in some way.


I’d been seeing Therapist A for almost seven years when everything changed. She was taking leave and I was on my own.

Pre-2021, I’d seen Therapist A once or twice a week pretty consistently since early 2016. Even when the UK went into lockdown due to COVID-19 at the beginning of 2020, we continued our sessions online; I didn’t find them as productive but it was better than nothing. We continued that way for a while, trying to manage my crippling anxiety over the pandemic, working on issues that came up as I persisted with my now online Masters classes, and continuing to work on the issues that had landed me in therapy in the first place. But then the schedule began to slip: Therapist A’s home life was pulling her away from work and I was working myself into the ground in order to complete the final project of my Masters. I barely saw her in the last four months of the course, which I really struggled with: I was digging into some pretty hard stuff, writing song after song about my experience of being autistic, and I craved that safe space to play them to her, to hear her perspective on what I was saying, talk about the feelings they were bringing up, and she wasn’t there. I told myself that it was a short term thing and that, once the Masters was over and her stuff was resolved, the schedule of our sessions would go back to normal. I think it’s safe to say that, given the title of this post, it didn’t.

I finished the Masters in September 2021 and officially graduated, walking the stage, a few months later in November. I had reduced and stopped taking Phenelzine at this point, in preparation for trying ADHD meds (and we all know how appallingly that went), and my depression was creeping back in; the situation was getting pretty desperate. But luckily, that was when Therapist A reached out and we started having sessions again. We had a lot of catching up to do but, by mid-December, we were up to date. Unfortunately, the ADHD medication was already hitting me hard and my depression had gone from a state I recognised to a whole new level of despair with increasingly overwhelming suicidal thoughts. My most vivid memory from that time is sitting in Therapist A’s new office, staring at the unfamiliar rug and hearing my voice in my ears as I confessed to those thoughts, my voice completely flat (this is known as ‘flat affect,’ a recognised symptom of depression and other mental health conditions). It still makes me nauseous to think about, even though so much time has passed and my depression has gotten so much worse since; I think, in my head, that was the beginning of this awful, awful time.

My last session was on New Years Eve and I was drowning, all of the impending new beginnings feeling more like a threat than a promise. When we hung up, I felt achingly hollow and that was only the beginning of a terrible night. But that’s a story for another time. January was passing around me, aimless and anxious, when I finally heard from Therapist A. But instead of setting up our next session, she was letting me know that she was taking leave indefinitely. Her reasons aren’t mine to tell but, between those, my ongoing abandonment issues, and my overwhelmingly bad mental health, I was devastated, spiralling into some grotesque hybrid of a meltdown and a panic attack that went on for hours: I screamed, I cried, I scratched at my face, I tore at my hair, I shrieked like an animal in pain. I guess that’s what I was. I felt like I was trying to exorcise a corrosive demon from my body but nothing helped, nothing alleviated the pain. I was shattered as brutally as if I’d been hit by a wrecking ball. That’s what it felt like, what my life felt like.

Eventually I physically ran out of energy and fell asleep, too tired and emotionally drained to even engage with the world. My depression became more and more overwhelming, compounded by the devastating effects of the ADHD medications and the loss of a massive source of support in my life, and, for months afterwards, I barely got out of bed, barely ate, barely talked. I abandoned social media and I avoided mirrors at every opportunity, to the point where I started to forget what I looked like. The suicidal thoughts were only getting stronger, stronger than they’d ever been in my life, and the feeling of being intrinsically, irreparably broken was – and is – a constant weight in my chest.

I’m not sure when or why I started getting out of bed, why I decided that I needed to go back to therapy. I think I  knew I was getting into a very precarious position mentally and the excruciating pain of being inside my head was getting so unbearable that I was willing to do anything to lessen the pressure. I did see a consultant at the local mental health unit but the experience was another traumatic one: after a panic attack at the front door, a junior doctor took my history and then brought in the consultant who told me about ECT and the Ketamine trials before telling me why I shouldn’t do them and recommending doing more of the things I love (which I’d already told him I couldn’t engage with because I was so depressed). So that didn’t improve my relationship with doctors and the medical profession.

For a short while, I worked with a therapist I’d met several years previously but the sessions only made me feel worse and while I have no doubt that it wasn’t intentional, I ended up feeling more broken and more traumatised by some of the things he said, trauma that I’m still carrying around with me. So I stopped seeing him and met with several new therapists, trying to get a feel for them and their methods before committing to someone new. But, just like with Therapist A, Therapist B was the first of the group that I met (a year ago yesterday, I believe) and between her therapeutic approach, her personality, and the fact that she’d brought along a dog she knew in order to put me at ease, she was the obvious choice.

As therapists, they both trained in several of the same disciplines and their skillsets overlap to a certain degree but, when discussing a particular issue, there were differences to how they’d approach it; there has been a fair amount of whiplash in getting use to Therapist B’s approach after so many years with Therapist A. But the point of this post isn’t to compare them – they’re both lovely people and very good at what they do, at least as far as I can tell – but rather to reflect on the process of moving from one to another and the feelings that that kicked up. And a lot of feelings there were – I even wrote a song about it called ‘Grave Digger.’ During the early sessions with Therapist B, we made a timeline of my life and discussed some of the biggest moments, many of which were difficult and distressing (and remain so to this day). Revisiting and recounting the hardest parts of my life was gruelling but I did my best to push through the internal resistance and breathe through the resulting turmoil; between that and the ongoing mental anguish, it was a difficult few months. I don’t mean to make it sound like one continuous torture because that isn’t true -we’ve talked about the good experiences that’ve made me who I am, of course, and there have been sessions where we’ve laughed a lot – but I think that building a strong relationship with a therapist and making progress will always involve periods of incredible vulnerability, which is always scary and, at times, painful.

Sometimes – okay, often – I feel like I’m not making any progress at all, partly because of all the disruption and the distress it’s caused. A year ago, I hadn’t expected to see 2023 and my depression and chronic suicidal thoughts haven’t lessened, even though I am taking Phenelzine again (at a higher dose, in fact) – after many discussions with Therapist B. It has made me more functional, to a certain degree, but the decision came with a price tag: my self harming escalated from cutting my arm to cutting my face. I’m not convinced anything’s changed; I don’t feel any better. But I can see that some things have changed and changed for the better, even though I can’t feel the effects yet: something has allowed me to start talking about some of the worst stuff in my brain, even if only a little. It’s something I could never have imagined doing so I know that that’s progress, even though I struggle to feel it.


I have heard from Therapist A several times now; the news has generally been positive, which has been a great relief (and I appreciate having a little less uncertainty in my life). Therapy is continuing as normal – the current version of normal at least – which I’m pretty sure is a good thing: the idea of trying to work my way through all of the emotions that I know would come up as a result of any potential change makes me feel physically nauseous.

I’m not always convinced that I’ve adjusted and sometimes I forget that I’m not going to see Therapist A, my body moving in the direction of that office as the car turns down a different road; that experience is more ingrained than I had realised at the time. And I know I’m still carrying a lot of hurt and anger over the whole thing, even though over a year has passed. I’m not angry at the people involved – nobody chose any of this – but there is anger and, although I’ve been slower to realise it, hurt too. I think it’s easier to be angry than to be hurt. Not always but sometimes. And, as I said, I have abandonment issues, issues that I’ve struggled with for a long time, which – unsurprisingly – have been exacerbated by this whole thing. It’s hard to lose someone that you trusted to never leave (a naïve ideal, I know) and it’s hard to trust someone new, ignoring the whispers that they’re just another person who will inevitably walk away. I think these issues are important to mention but they probably need their own blog post rather than taking up space here: when talking about changing therapists, it’s not something that everyone has mixed into the equation. All of that said, I’m trying to trust and I think that, for the most part, I am, even if it does sometimes feel like a conscious, concentrated effort. The progress isn’t as fast as I’d hoped it would be when I committed to therapy again last year but the proof is there. I’m sharing things I never thought I’d share and that’s certainly not nothing.

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.