Grateful 2025

TW: pet loss, pet death, depression.

I had hoped to get this up on Christmas Eve – like I used to – but given everything that’s been going on with my mental and physical health and the resulting fatigue, I’m not writing as quickly or as effortlessly as I have done in the past. But fast or slow, writing down my thoughts helps me to reflect and, considering how extreme the highs and lows of this year have been, some reflection – especially on the good things in my life – has helped me to feel more grounded as the year ends.


MY MUM – I’m always grateful for my Mum but I couldn’t have imagined the ups and downs of this year if I’d tried and I absolutely couldn’t have gotten through them without her. Between Daisy (my Autism Assistance Dog) moving in and getting settled, the difficulties and stress surrounding releasing new music, music and conference commitments, chronic pain and illness flare ups, a pinched nerve, a hospital visit, and a debilitating mystery illness (which, thankfully, has now been demystified and I’m starting to recover from), she has been an anchor, a touchstone, and a source of endless support. And considering the busy year she’s had, I’m so beyond grateful that I don’t know how to fully express it. I just know that there’s no way I could’ve survived this year without her. 

MY PARENTS – With everything going on this year, I’m so grateful to have had the support and encouragement of my parents. Everyone’s had a lot to deal with – it’s certainly not been the easiest twelve months – but they’ve still been there for celebration and every challenge that this year has brought. They’ve been so supportive of everything I’ve taken on this year – and not just mine: they’ve been champions of my friends and their projects too, which I couldn’t love them more for. 

THE TIME I HAD WITH LUCY – I still feel so deeply sad and the house feels so lonely without Lucy but I would never give up the time I had with Lucy; I will always be grateful for every moment I had with her, even at the end when it was so distressing – for all of us. She was with me through so much hard stuff, through so much growing up, and coming home to her was always so comforting. She was so special – so sweet and affectionate and sensitive – and she’ll always have a special place in my heart; I’ll always love her more than I can properly explain. Nothing I say feels like it’s enough. I miss her more than I know what to do with and I still feel more than a bit lost and untethered without her at the centre of the house. 

THE FAMILY OF CATS – Between the arrival of Daisy early in the year, the loss of Lucy, my health issues, and the summer months when they’re almost entirely in the garden, home has felt very much in flux and I haven’t seen as much of my little family of cats as I would’ve liked and that’s been really hard. It was also incredibly scary to find out that Sweep, one of the youngest generation, suddenly needed a really big surgery, especially so soon after Lucy had had to be put to sleep. But fortunately, it went really well and she recovered beautifully, if impatiently. Things are getting better: they’ve migrated back inside with the colder weather and they’re slowly becoming braver – or at least less likely to run – around Daisy. It’s not that she’s a danger to them in any way, she’s just deeply enthusiastic and bouncy, the unpredictability of which they are not fans of (plus she must seem huge to them, while Izzy has always been even smaller than they are). They’re getting used to her and she’s getting better about not bounding up to them every time she sees them. It’s been a big change for everyone and I’m honestly just so grateful that, even with Daisy’s arrival, they’ve never doubted where their home is. I’m so, so grateful for the time I have had with each of them this year – I don’t take a second of it for granted – and I’m hopeful that things will only improve and become more stable going forward.

IZZY – I’m so grateful to have this fluffy, little sock thief in my life. She’s a constant source of love and joy and hilarity. If she could, she’d spend every hour of the day in my lap and I can’t say I’d complain; she spends almost all day curled up against me on the sofa and then all night curled up against me on my bed. She’s so adorable, so sensitive and snuggly, and she’s so funny and playful. She has struggled a bit since Daisy moved in: she doesn’t like having to share me. She gets jealous of how Daisy supports me and tries to take over, tries to prove that she can do it just as well as Daisy can and, to her, Daisy is big and enthusiastic and unpredictable (and Izzy’s face is right at the height of Daisy’s furiously wagging tail, which has caused more than a few incidents between them). They’re getting there and, thankfully, Daisy is very patient with her; I couldn’t bear it if they were just fundamentally incompatible. My relationship with Izzy is so deeply special, both because of how it began and what it’s grown into, and she’s a constant comforting presence that I’m beyond grateful for.

DAISY, MY AUTISM ASSISTANCE DOG – At the beginning of the year, Daisy officially moved in and, a few months later, she was fully qualified as my Autism Assistance Dog. I’ve posted about almost all of the training process but I really need to write something about what it’s been like since she was qualified; I don’t think this post is the place to reflect on all of that because I have so many thoughts on it but this post would’ve been incomplete without her. It’s safe to say that it’s been a massive change and, as someone who’s not very good at change, it has been a hard year with a lot of anxiety. It takes time, after all, for any dog to settle into a new home, as does getting an Assistance Dog used to more and more situations and environments. She’s been doing so well and I don’t think I’ve been doing too badly either but it’s been slow going, especially as it’s been complicated by a chronic pain flare up, a pinched nerve, and months of stomach issues. So we haven’t done as much as I would’ve liked but I’m really proud of everything we’ve managed so far. Her relationships with Izzy and with the cats are still developing and their interactions don’t always go smoothly but they have and are making progress. It’s easy to spiral about them never truly getting on but I have to trust the progress they’ve made so far and that they can make more. She’s an amazing dog: sweet, smart, eager to please, always up to play or snuggle… She has such a gorgeous face and she gets so excited whenever I pick up her jacket: she’s so excited to do her job, which is just adorable and always makes me feel calmer about going out with her. It’s a long process, getting confident working as a team, but every step has been in the right direction and I’m really grateful for that. I’m also really grateful for the ongoing support from Autism Dogs. I wouldn’t have Daisy at all without them, of course, but their support this year – from accommodating me during the the final stages of Daisy’s training to the regular check ins – has been amazing and so appreciated. It’s been a huge undertaking, especially as a chronically ill and disabled person, but they’ve been so helpful and so encouraging. I’m not sure we could’ve done this without their consistent support.

(Left: Izzy // Right: Daisy, my Autism Assistance Dog)

MY THERAPIST – Having abandoned talk therapy and started somatic therapy for trauma release in 2024, this was the year that I really committed everything to it and although I’m not sure I can fully explain it, I can say that it has had a huge impact on my life. Without a doubt. I learned a lot in talk therapy but I think it can only do so much when it comes to neurodivergence and trauma (although that’s just my opinion based on my experience) and somatic therapy takes a very different approach. I’ve been working with my therapist on learning to regulate my nervous system and helping my brain and body to reconnect so that my brain is able to recognise the trauma that my body is holding onto and then strengthening it so that I can go on to process that trauma as my brain and body feel able to. For a long time, I’ve struggled to fully feel my feelings, like I can only feel so much before they get shut down and, over the last six months, that’s started to change, which is both amazing and kind of terrifying. There is a reason we shut down these feelings after all. But my therapist is brilliant. Right from the beginning, we’ve gotten along really well and I so appreciate how she’s adopted my special interests to help me make sense of aspects of somatic therapy and how to get the most out of it; she always meets me where I am and I’ve never felt alone in the process. Because somatic therapy focusses much more heavily on feeling (while talk therapy – in my experience, at least – focusses much more on thinking and reasoning), I feel like I often go into it very much on trust: I might not fully understand or feel whatever it is we’re working on in that moment or in that session but I trust my therapist and I trust her confidence in the process. It’s hard to define the progress I’ve made – trauma and safety and emotions aren’t easily measurable – but I know it’s there. I’m learning a lot and my body’s learning a lot and I know that, in time, I’ll see the proof of all of this learning.

MY FIRST HYDROTHERAPY POOL AND FINALLY GETTING BACK TO THE POOL – Early in the year, the gorgeous pool that I’ve been using to do my hydrotherapy since 2021 closed, much to my distress. Not only did it fit all of my needs and allow me to do my exercises without an audience, it was an important fixture when my mental health was particularly bad (from late 2021 to late 2022). I was very attached. I’m so grateful for the time I had there: I needed a safe space, physically and emotionally, to start building my strength back up and I couldn’t have asked for anywhere better. Finding a new pool has been really difficult but I have recently started going to a new one; it’s not the same but it has different advantages and it does allow me to get back to working in the pool, which I am very grateful for. The transition is hard but I’ve never been particularly good at change. It will just take time; it always does. 

THE TATTOOS I GOT THIS YEAR – Spending less time in the pool meant that getting more tattoos wasn’t as logistically complicated as it had been previously and over the last twelve months, I’ve managed to get several new ones, including my tangle for the ten year anniversary of my Autism diagnosis and a tribute to my beloved Lucy. I had hoped to get more but with four months of the year getting swallowed up by a pinched nerve and a mystery illness, just getting out of the house has been a challenge, let alone going to a tattoo studio and sitting through a session (having said that, I do actually find being tattooed more relaxing than painful – so far at least). I’m pretty sure they weren’t necessarily the ones I thought I’d be getting when I imagined this year but I’m certainly not complaining! I love them all and I’m looking forward to getting more whenever the opportunity presents itself.

(Left: Two dragons by @valeries.tattoo // Right: Tangle by @gaiahart)

POETRY ORCHARD – I touched on this in last year’s Grateful post but, at the beginning of 2024, I joined an online poetry community called Poetry Orchard and it was, without doubt, one of the best decisions I’ve ever made. I’ve written so much poetry that I’m so proud of since I started going to their workshops, which are always fun and cathartic and inspiring; they’re always a highlight in my week. And I’ve met so many amazing people in this community: they’re all so lovely and thoughtful and such brilliant writers. There’s not one among them that shouldn’t be a published poet. We have the most interesting, moving discussions and I feel so seen and so understood (there’s a lot of overlapping experiences with mental health, neurodivergence, disability, chronic illness, and so on). I feel so lucky to have found this space and the friendships that have grown from it are so special to me.

MY FRIENDS – I’m so, so grateful for my friends, from the steadiness of my oldest friendships to the blossoming of the newer ones. Between working with Daisy and releasing new music in the first half of the year and my chronic pain and illness during the second half, I haven’t seen nearly enough of them but they’ve still been so supportive of me, of my music, as I’ve struggled with my health stuff… I feel so lucky to have such wonderful, kind, creative, and passionate people in my life; I’m inspired by them everyday and it’s an honour to play even the tiniest role in the incredible work they’re doing and putting out into the world, even if all I am is a witness and cheerleader. I see them changing the world, person by person, and I can’t be anything but thankful for the path that led me to each and every one of them.

RELEASING MUSIC AGAIN – This year, I finally, FINALLY, released new music and, not only that, but I released my beloved Autism centric project, Too Much And Not Enough, Vol. 1. I started working on this in 2021 but I’ve been thinking about it for even longer and now it’s finally out in the world and people are actually listening to it! I’ve had some amazing feedback on it and some of the stories people have shared with me upon hearing it have been so incredibly touching. I’m so grateful to everyone who has listened to it so far and I am so beyond grateful to everyone who helped me to make it what it is and then get it out in the world. Working with you all was an absolute joy and I could not have done this without you. It may have been the most stressful experience of my life but I have never been so proud of anything and I can’t wait to share what I have planned for 2026.

(Write This Out – Single, In The Mourning – Single, The Loneliest Whale – Single, Too Close And Not Enough, Vol. 1 – EP (top to bottom, left to right))

SO MANY GREAT SHOWS – Concert wise, I thought last year was probably unbeatable with so many incredible concerts – from the super special album release shows of my friends to the almost-four-hour-long epic that was Taylor Swift’s The Eras Tour – but this year was also deeply special in its own way. Several of my friends released new music and I got to see them perform those songs live at the launch parties. Cora Rebel released her second EP, Small Town Murder, which I love even more than her first EP, Room For Wonder. I’m not kidding: I’m still obsessed with every single song. Similarly, I’ve been a fan of Jaz Beeson’s music since we met at university and the EP she released this year, Aren’t You Cool, is so good and her live performance has only gotten better since I last saw her and her band perform. I also made friends with the wonderful Tygermylk this year and when they released their debut album, Local Girl, Always Tired, I got to see them play the whole album live in a beautiful church in London; it was such a special event. I feel so lucky to have so many creative friends putting such awesome work out in the world and I’m so excited for what I know is coming in the new year. I also got to see Maisie Peters at one of her two Before The Bloom shows, where she gave us a sneak peak at her new album while revisiting past songs that she felt reflected the same energy as the new music, which I thought was a really cool way of structuring a gig; I got to see Maren Morris blow the roof off The Roundhouse with one of my greatest friends (we’ve been going to her shows together since The Hero Tour in 2017); and Gracie Abrams just blew me away on The Secret of Us Tour to the degree that I bought a ticket to a second show because she was so good. And I can’t talk about amazing gigs without talking about Erin LeCount (although I want to talk about her more in a minute). I saw her first in May where she headlined Bush Hall in London and she was amazing. I wasn’t able to see her the next time she was in London (because the accessibility team at the venue were actually the worst I’ve ever encountered) but when I saw her in December when she sold out KOKO in London, she was absolutely incredible: she only released her second EP in April and she’s already such a compelling performer. That second show was one of the best I’ve ever been to and I was so moved when she played my favourite songs that I cried (something I’m rarely able to do in public after years of masking). It was a deeply special year of concerts, just like 2024 but in a very different way. I’m grateful for every single one.

(Left: Sarah Close, Cora Rebel, Gracie Abrams, Erin LeCount (clockwise) // Middle: Gracie Abrams, crybby, Maisie Peters, Jaz Beeson (clockwise) // Right: Maren Morris, Tygermylk, Erin LeCount, Erin LeCount (clockwise))

And while it wasn’t a show, I did get to go and fangirl my little heart out at Ascension, a new Stargate convention. I got to see so many of my friends from The Companion, which was so much fun and although Amanda Tapping, one of my biggest heroes, had to pull out of the event, I got to meet Richard Dean Anderson who is the most wonderful human being and it was such a special experience. And he’s such a dog person so he and Daisy had some absolutely gorgeous moments together. It was Daisy’s biggest outing so far but she did brilliantly and was absolutely adored by everyone from the moment I took her jacket off to the moment I put it back on again – everyone was so respectful when she was working, which made the experience so much easier for the both of us, and it was so lovely to see how happy she made all of the guests and attendees, especially when she was off duty and was allowed to interact with everyone. Richard Dean Anderson called her his favourite convention attendee, which still makes me smile so much. I can’t wait for Ascension 2 in 2026!

ERIN LECOUNT’S MUSIC – I found Erin LeCount in late 2024 and her music completely dominated my listening time over the last year. She put out her second EP, I Am Digital, I Am Divine, in April, which is a stunning, beautifully cohesive project: the concept, the themes, the lyrics, the vocals, the melodies, the production… they’re all incredible. When she released the EP, she described it as being “about feeling dysfunctional and like there is something inherently wrong with you, the ‘digital’ being this neurotic, obsessive, ‘cold’ and very analytical part of me that felt like a battling a part of me that’s very sensitive, the ‘divine’ and the big overwhelming feelings. They’re two sides of the same coin that I’m always finding how to balance, and these songs are all those many imbalances and highs and lows.” I relate to that statement so much and I relate to every song, although my favourites are ‘Marble Arch,’ ‘Sweet Fruit,’ and ‘Silver Spoon’ (I’ve written more about the individual songs in my upcoming Songs of 2025 post so I won’t double up by deep diving into them here), with lyrics like “I am hard to love / Not what you thought / Am I? Am I? Am I? / Is there a fault in my core? / Did I do something wrong? / Did I? Did I? Did I?” and “I need someone / To look through and see me, to rip out the weeds / Growing where my heart was” and “I split the good wine, I panicked / A disaster, a knee-jerk reaction / Then everyone around us starts laughing / Is that how it’s meant to happen?” and “You were sweet, I got mean / And when we fight, I refuse to eat.” She’s since released two more songs, ‘808 HYMN‘ and ‘MACHINE GHOST,’ both of which I love but ‘MACHINE GHOST’ instantly became my favourite song of this year and probably for a long time to come; I feel the theme of dissociation so deeply (especially as I do more and more somatic work and the connection between my brain and body gets stronger – I actually listen to this song during therapy because my therapist says my body is more receptive to releasing trauma compared to when I’m not listening to it) and the lyrics, like “It hurts to stand, it hurts to stand / It hurts to stand, it hurts to stand,” and “Lights come on and there’s nobody home / And all my love pushed my back against the wall / Can someone tell god I should be feeling this more? / I can’t love you like I am supposed to / Baby, you’re the machine and I’m the ghost,” and “‘Cause everything starts hurting when I see the world in colour / And I wanna turn it off,” and “I’m not at the party and I’m not in my body,” feel like they could’ve been written for me. I feel so seen and so validated by her music and watching her produce all of her music and then recreate some of these tracks live on stage is so inspiring to me, so much so that I’ve started learning more about production for my own creative process when making music. I’ve already talked about seeing her live and how special that has been, her recent show at KOKO being one of the best shows I’ve ever been to. I wish I’d found her sooner but I’m so grateful that I found her when I did because her music means so much to me and watching her creative process and live performance develop in real time is so, so beautiful.


There has been so much to be thankful for, despite how difficult this year has been. In my experience, the relationship between gratitude and depression can be a complicated one, given how depression distorts reality and dampens emotions, and it’s something I’ve been struggling with for several years now. Sometimes engaging with that tug of war is just too hard, especially when I’m already working so hard in therapy, so the only thing I can do is acknowledge that it’s there – that it is complicated – while honouring the things in my life that are objectively positive, the things that make my life better. Sometimes that’s all you can do and that’s got to be enough.

Autism Dogs – The Second Playdate

My second playdate with Daisy didn’t happen until early October 2024 due to both us and Autism Dogs having had to reschedule at one point. But we finally made it happen and we were headed back to the farm to see Daisy. We had Izzy with us again to give both of the dogs another chance to get to know each other. And since this trip included two sessions over two days, we booked a dog-friendly hotel for the night before and the night between the two sessions; it was a Holiday Inn Express, which turned out to be a really good choice because it had a lot of my safe foods!


NIGHT BEFORE

Mum and I drove up to Stoke-on-Trent the night before the first day; we’d be starting early and we never would’ve made it up in time if we’d driven up the morning of. We got settled in our hotel room and although Izzy still struggled with the noises from the hall and the surrounding rooms, she did better than she had on the last trip. We had some dinner, chilled out with some TV, and went to bed early so that I could manage the early start the next morning.

DAY ONE

We were up and out early to get to the Autism Dogs farm in time for our session with Daisy. I’m always so excited to see her and work with her again but I do find it quite nerve-wracking: there’s just so much to learn and remember and I get so anxious about doing things wrong that it can get pretty overwhelming at times.

Izzy and I waited in the paddock while Mum let them know we’d arrived and then returned with Daisy and one of the trainers. Izzy was definitely more excited to see Mum than she was to see Daisy. Having Izzy present for these sessions would hopefully allow the two dogs to get more comfortable around each other; starting out in the paddock gave them plenty of space to move around, to set boundaries and test them, and we even got them walking together after a while.

Then, in the training room, we used the smaller space to try and build on that. We encouraged them to interact a little bit more but just existing calmly in the same room together was a positive step forward, considering how they’d just barked at each other during the previous session. They did well: progress was definitely made and they were very cute to watch. They were still struggling with competing for my attention – and getting jealous when I engaged with the other – but I would’ve been surprised if we’d managed to solve that in two sessions: Izzy has practically been glued to me since I got her and, of the time I’ve spent with Daisy, she’s rarely had to share me. So neither of them are keen on the other being with ‘their person.’ 

I also did some more lead walking practice with Daisy – I find the multi-tasking aspect of it really difficult so I wanted as much practice as I could get – and, to my surprise, it did feel easier this time. That was a big relief to me: I find it really easy to spiral about not being good at any of this and finding it so overwhelming, so to tangibly feel that progress was definitely reassuring.

We spent the rest of the session in the training room, just hanging out and letting everyone get used to each other. It was a chance not just for me and Daisy to bond but for my Mum and Daisy to build a relationship too, for Daisy and Izzy to get more comfortable together, to reassure Izzy that everything was still the same with Daisy around… It’s obviously easier for me and Mum while the dogs need a lot more reassurance and rewarding for every positive interaction. As you can see from the photos below, Izzy still wasn’t convinced and really just wanted me to herself but this is all still very new to her and so it’s going to take time. At the very least, they were a lot less bark-y, which my ears were very grateful for.

Ever since The Eras Tour ended in August (I know I haven’t written about that experience yet but I do want to – the brain fog has just been brutal), I’ve been feeling bereft of making friendship bracelets and so I’d been making as many as I could for the staff at the farm. I’m not sure how many I ended up making up in the end but I left them there that afternoon to be passed around during the afternoon, evening, and the next morning. I’d made a personalised set for myself and for Mum and then for Caroline (the founder and CEO) as well, as a thank you for all of her support. 

Back at the hotel, I had to have a nap, exhausted by the intensity and focus of the playdate, and then Mum and I checked out the hotel’s pool. It was small (which was fine) and busy (which wasn’t ideal) but I got to stretch, do some of my hydrotherapy exercises, and get some gentle exercise, which definitely helped my chronic pain. The amount of time I spent scrunched up in the car on the drive to and from the farm isn’t great for my body as a person with Hypermobile Ehlers Danlos Syndrome so having access to a pool was really great.

Between the playdate and the swim, I was completely exhausted – even with my nap – so we had a quiet evening. We had dinner (with an awesome chocolate pudding!) and cuddles with Izzy in front of Red Eye before going to bed early since we had an early start the next day.

DAY TWO

The second day began earlier than the first day, which was a bit of a struggle for me since I hadn’t slept particularly well (which I generally don’t when I’m away from home). But we made it and began the playdate in the paddock, giving Daisy and Izzy a chance to get reacquainted: they were much calmer than the day before, which was reassuring and pretty cute. 

Then we headed inside and went over some of Daisy’s commands again, which was really good because there are a lot of things to remember and in the time between playdates, I’d worried that I’d forgotten all of it. But having said that, I felt like I’d retained a lot more than I’d thought, which was very reassuring. That was actually good timing because, on that particular day, Daisy wasn’t at her most well-behaved (I think she was just overexcited). That sounds odd to say but it meant that I got to see how the trainers correct the undesirable behaviours and regain the dog’s focus and then practice it myself. Again, it’s really good knowledge to have but I was exhausted! I was learning a lot, learning it fast, and having to concentrate and process information really fast; it was hard work. In hindsight, we probably could’ve taken it a bit slower but between my anxiety about learning everything and just getting caught up in everything, that didn’t occur to me until later.

After that, we had a break and I got to have some good cuddle time with Daisy, which I always look forward to: she’s so gentle and sweet and affectionate – once she’s settled down a bit and worked off her excitement! I was so tired that I practically fell asleep curled up with her and could’ve happily stayed like that for the rest of the day.

After the break, we were headed out to the paddock but, before we went outside, I was shown how to get Daisy’s slip lead – her working lead – on quickly and efficiently. I needed to watch it a few times but once I had all of the steps in my head, I actually didn’t find it too difficult; I even managed to do it smoothly on just my second try. That was very pleasing, especially since I’ve struggled with feeling like I’m just not very good at any of this (regardless of whether it’s objectively true or not – or the idea that I’m still learning and it’s the practice that makes you good at something).

Out in the paddock, we did some recall practice, which Daisy did struggle with initially; she is, after all, very used to doing recall with the trainers. But once she realised that I had treats and made a huge fuss of her when she came to me, we had it down. I had to laugh: labradors are so predictable when there’s food in play. 

Then we went out into the lane to practice her lead walking, which is how she’ll walk with me when we’re out in public, when she’s working: she stays close to my body and keeps her attention on me and (at least at this point) I reward her whenever she makes eye contact with me, checking in. It was actually starting to feel a bit easier and not so overwhelming, which definitely felt like an achievement.

That was officially the end of the day but the farm did have a relatively new litter of puppies that they will hopefully be training to be more Autism Dogs and I got to spend a little bit of time with them before we left. They were gorgeous in that way that puppies just are, especially Labrador puppies in my opinion; they were all soft and warm and snuggly. And for some reason, they smell amazing. I was besieged by them the moment I put my hands in the pen and although my Mum joked that I couldn’t kidnap one, I think the real danger was them kidnapping me: they just attached themselves to my jumper and every time I peeled one off, another had got their teeth into it, and eventually I had to be rescued because two hands just weren’t enough. They were utterly divine though and I had some lovely cuddles, which just gave me such a serotonin boost.

The sessions are pretty intense and require a lot of mental energy at the very least so it was a really nice way – the perfect way – to just decompress for a couple of minutes before getting back in the car and getting on the road. I would’ve been content to spend hours with them but eventually Mum pulled me away and we said our goodbyes, got in the car, and headed home. It was a very long drive after some very long and tiring days but it really did feel like progress is being made, despite my anxieties trying to tell me otherwise.


So that was the second playdate! Even though it was obviously more tiring to do two days in a row, I did really start to feel like I was making progress and I felt more confident with two back-to-back sessions under my belt. I have no doubt that I’ll probably get super anxious again with no way to practice the skills between the playdates but I’ve also now had proof that, even when I feel like I’ve forgotten it all, they’ll come back as soon as I was using them again.

Next up, my first sleepover with Daisy!

Seeking Help For Chronic Pain (Year Three)

It’s been more than three years since I started pursuing support for the pain I experience and still I have nothing from the NHS. I go to hydrotherapy as often as I can, although I’m still waiting for the second NHS Hydrotherapy appointment to assess the exercises as I feel I need a harder routine and have been waiting almost six months for that. It’s helpful and I do often enjoy it but I’m still in pain a considerable amount of the time. My GP has said several times that she’ll reach out to the Pain Clinic but we still haven’t heard from them; I haven’t had contact with them since the appointment in November 2021.

This post spans from April 2023 to March 2024.


SINCE LAST UPDATE

Since the last update, I had periods of unpleasant pain but nothing worse than my usual levels of pain. I usually experienced it in phases where it got bad and then receded to all but nothing. I had days where I felt like the only problem was muscle weakness rather than actual pain (despite the hydrotherapy) but most of the time there was some kind of pain in some part of my body; I just didn’t always notice it because I’m so used it at this point. Sometimes I forget to take painkillers because I don’t recognise that what I’m feeling is pain.


JUNE 2023

Everything was normal – I was still waiting for an appointment with the NHS Hydrotherapy Department and my GP was still chasing up the Pain Clinic – until I managed to seriously hurt my back. I don’t know what I did. I really don’t. I was sitting on the ground, playing with my neighbours puppies, and then, when I tried to get up, my back was so painful that I could barely move. At first I figured that sitting on the ground without any support for my back had just resulted in a strained muscle or something and that a few hours on my heat pad would sort it but hours later, I still thought I’d collapse or scream or throw up if I so much as turned slightly to one side or the other; it was horrendous. I think it was honestly the worst pain I’ve ever experienced in my life; at the very least, it’s in the top five. It was worse than the cracked rib, no question.

Again, I thought a few days of the heat pad and painkillers would, at the very least, get the healing going but almost a week later, I was still barely able to move and the muscles spasmed several times that resulted in me sobbing on the floor, unable to get up – actually physically unable. We had to call 111 several times because of the days and times of those moments (and because I genuinely felt like I couldn’t move and therefore get up and go to the doctor). I was taking my strongest painkillers but they weren’t making that much difference and I could only take them for three days at a time; I dreaded the days when I couldn’t take them. Plus my sleep was terrible because the pain woke me up every time I turned over.

Eventually I had to go to the doctor and he was convinced by my pain straight away, given that I was hobbling like someone who’d just celebrated their hundredth birthday. He was understanding and sympathetic and recommended medication for a few weeks before reassessing. He ran through the options (I’ve already tried most of them and found them ineffective) and almost prescribed me Tramadol (a drug my arthritic dog used to take, which amused me) but then he discovered that it would’ve interacted badly with my antidepressant, Phenelzine (something I’d already assumed before he could even look it up). So he gave me a combination of weaker ones and said that, if those hadn’t worked in a couple of weeks, then we would revisit and try something different.

I had to keep my movement extremely limited but I also used a back brace when I did need to do things. It wasn’t the most comfortable thing but the support allowed me to do a bit more and live some life that wasn’t confined to the sofa. The pain killers helped somewhat, at least at the peak of their effectiveness, but it wasn’t until a physiotherapist we know suggested a TENS machine that things really changed (this was about three weeks after the pain started). We attached it to my back, turned it on, and the relief was so overwhelming that I thought my knees would collapse under me. The pain was gone. Well, gone where the pads were attached and it was amazing. It’s not a perfect system – although, if I bought a ridiculously expensive one, it might be – but with that attached to me, I could move around, I could lean, I could actually do things. And I wasn’t constantly exhausted and miserable from the pain.

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JULY 2023

More than a month after I originally hurt my back, it was still troubling me, although not at all to the same degree as it had been; between painkillers, the TENS machine, and slowing moving more and more, I got back to almost full movement without pain. I still had to be a bit careful about stretching, and twisting, and lifting but, for the most part, I was back to normal – my normal, at least. Because my normal almost always involves some level of pain in some part of my body.

It was around the month mark that I got back to swimming and hydrotherapy and I was vaguely appalled by how much stamina I’d lost in the time since I’d last been going to the pool consistently (which had almost been two months between the back pain, my trip to Germany, and a closure at the pool). I had to work really hard not to overdo it and go back to my old routine straight away, building up again, but it was extremely frustrating. My work in the pool did aggravate my back a bit and it took some TLC after each session but very, very slowly, things started to get back to normal.

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In mid-July, I also started physiotherapy, trying to build up the strength and stability of my muscles, especially my core, as is recommended for Hypermobile Ehlers Danlos Syndrome (she said some really interesting things about hypermobility – specifically as it applied to exercise but it was also interesting in general – and I couldn’t wait for this post to talk about it so I posted about that here). It felt like a somewhat humiliatingly ‘easy’ routine to be completely exhausted by but if it’s going to help with the pain, help me swim more, help me survive the Taylor Swift concerts next summer… I’ll do whatever it takes. The early days of the exercises were tough but it was kind of exciting, knowing that I was moving forward bit by bit, slowly getting closer to my goals. I can’t remember ever feeling strong or in complete control of my body and while I don’t feel that way at this point, I can’t help the little surge of hope that all of this will get me there one day.

I also read about a charity swim in September and that got me really excited. I swear, almost all charity challenges are fitness related – always charity walks or runs – which I find deeply frustrating because I want to help and be involved but I just can’t handle those; I can’t even walk very far without it feeling like there’s glass grinding in my joints. But a swim is perfect. And likely because it’s in aid of a charity, it’s very accessible, the idea being that you choose the length of swim that will challenge you without pushing you to an unsafe or uncomfortable point (one of the lengths is getting in the pool, which I think is fantastic, because, for some people, just getting in a pool is a huge challenge). During my next session at the pool, I tested myself to see how far I could go before it felt like I might regret trying to do more, like pushing harder might be problematic, and that turned out to be just over 400m. I don’t think that’s all that bad, considering I haven’t exercised consistently in over a month. So I could do the 400m length swim in September easily; the next goal is 800m but who knows what will happen between now and then…


AUGUST 2023

I continued working on my hydrotherapy and physiotherapy (although I had to take a week off at one point when an ear infection absolutely floored me – pain, deafness, and balance related problems made it all but impossible to walk, let alone do any sort of coordinated exercise). I had my second physiotherapy appointment and that went well; we increased the resistance on some of the exercises and added a few more. My muscles started twitching after I started physio (which initially really freaked me out) before subsiding and that started again with the increase but now we know why it happens, it’s just mildly irritating.

I also tested how far I could swim, about a month after that first experiment, and I managed almost double my original distance and managed it easily; I could’ve gone further had I not run out of time at the pool. I’m really proud of that progress, of the progress I’ve made in both. It’s been so long since I could even do this level of exercise and I can see it translating to the rest of my life, even if it’s slow going.

I wrote about this here but I was also diagnosed with Fibromyalgia. I won’t rehash it, especially since I’m still not sure how I feel about the whole experience, but I don’t want to ignore it, given that one of the main traits of the condition is pain. It’s just that I don’t know how the diagnoses of hEDS, Chronic Fatigue Syndrome, and Fibromyalgia fit together and, after everything, I’m so deeply wary of (and triggered, to various degrees, by) doctors. Anyway. In theory at least, that’s part of the picture.


SEPTEMBER 2023

September was a bit of a wild ride that I could’ve done without on the whole. I had ongoing shoulder and elbow pain (no doubt due to my repetitive hair pulling, excruciating lower back pain for over a week (which almost consistently disrupted my sleep, waking me up every time I tried to turn over, so I was tired and unproductive and frustrated too), and several days of awful knee pain, although that was probably my fault: I think I overworked it one night when doing my hydrotherapy exercises and, had I taken the next day to rest it, it probably would’ve recovered quickly but I ended up going to London (and having an almost meltdown on the street), which I’m sure only made it worse. So that wasn’t great but it wasn’t the worst it’s been so I’m not complaining (much).

I had my second hydrotherapy appointment and the hydrotherapist was both impressed and pleased by my commitment and my progress, which was very nice (and encouraging to hear – sometimes it feels hard to tell whether anything is actually changing so it’s comforting to hear from someone who really knows that I am). We discussed the exercise I’d had to cut because it hurt my arm and she gave me a new one that had the same final result but wouldn’t aggravate my elbow joint. Then she gave me about ten new exercises to work on, which I’m excited to get started on. They’ll be working different parts of my body so it’ll be interesting to see what that feels like and what that means for my stability and stamina (if I’m able to tell). I don’t get any more appointments so hopefully these two exercises will keep me going, at least for the foreseeable future. Given my history, I wouldn’t be surprised if I was back at some point with a different problem that needs support; my hEDS is just the gift that keeps on giving. During the rest of my pool time, I’ve also managed to swim a kilometre and do it pretty easily. I thought a lot about the charity swim I’d been planning to do and eventually decided that, instead of the one I’d originally planned to do, I’d rather do one for Mind, for World Mental Health Day. That would be a really meaningful way to celebrate my progress and do something that helps a cause really close to my heart, especially since I can’t do the more traditional charity runs.

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I also had another physiotherapy session and my physiotherapist was also really pleased with how I was doing; she commented on it the second I walked into the room, that I was standing better. As I said, I find it really hard to tell if things are changing so the fact that she could see it that immediately was good (and interesting) to hear. We talked about the pain in my shoulder and elbow and she massaged both, which felt amazing; having felt both of the joints, she said she thought I probably had Bursitis in my shoulder and Tendonitis in my elbow. We went through my exercises and she gave me a new exercise in place of one that was hurting my elbow. She also gave me a couple that would strengthen my shoulder and elbow. I started doing them straight away and I could definitely feel them working!

The only other things of note, I guess, are that, one, I had all of the blood tests done that the doctor (the man who’d diagnosed me with Fibromyalgia) had requested and, two, I had my COVID jab (my fourth vaccination, I think), which had my arm hurting for several days. I had to slow down on the physiotherapy (less so the hydrotherapy) but it wasn’t long before I was back to my normal routine.


OCTOBER 2023

I started October, focussed on swimming in order to do my 5km for Mind: the plan was to swim 1km per swim over the course of the week leading up to World Mental Health Day. And then, suddenly, it was time to do the thing. After the work I’d put in, it actually wasn’t too difficult (although I gratefully took some time to rest afterwards) and I really enjoyed it. And family, friends, colleagues, and strangers generously donated over £600! I’d like to do another one at some point but I don’t want to push myself too hard and I really don’t want to take advantage of my community by repeatedly asking them to donate when the cost of living crisis is hitting everyone really hard. So I’ll choose my event and time of year carefully.

As much as I loved the swimming, I had really missed my hydrotherapy exercises, which I’d had to neglect to build up my stamina and then get the 5km done in five different swims. So it was really nice to get back to them and build in the new exercises I’d gotten from the hydrotherapist. I started feeling them in my core straight away, which was very satisfying: it’s proof that the exercises are working the muscles they’re supposed to be.


NOVEMBER 2023

I continued with my physiotherapy and hydrotherapy, although pain in my hip did make it hard and I had to reduce the amount of exercises I was doing. But I did finally get some compression socks to help with my POTS and I definitely felt the difference when standing or walking. They’re not life-changing but I’ll take anything I can get.

Otherwise, things have been okay, although I did fall down while walking along the South Bank in London. It’s all concrete so it was a pretty hard fall but, at this point, I’ve learned how to fall so that it doesn’t do much damage or hurt too much; usually I just feel a bit shaken up. I was with family and several people came over so I was well checked over but I was fine.


DECEMBER 2023

I was having serious pain in my back, on and off throughout the month, which did limit my ability to exercise – and to just move at all. The exhaustion of being in pain made moving my body hard too; it wasn’t a fun time. Between that and Christmas, New Year, and the associated family commitments, I ended up accidentally taking a couple of weeks off anyway.


JANUARY 2024

In the new year, I slowly got back to my swimming, hydrotherapy, and physiotherapy – with an updated routine. I also started to do a bit of indoor cycling, although that was a lot harder. But it’s all, hopefully, going to help with building up my strength and stamina and stability. It did all became much harder work when I changed the medication I take for POTS, switching from Propranolol to Ivabradine because all of my symptoms got worse: I was constantly out of breath and shaky, unsteady and exhausted. It was a rough changeover. I also fell down while in London again. This time was on grass so it really wasn’t a big deal physically: it didn’t hurt at all but I do always feel shaken up, like my skeleton has been rattled around inside my body. It also makes me feel less secure, less in control of my body, which isn’t a nice feeling.

I was still struggling with pain in my back, as well as pain in my hips. Oh, and my elbows. It stopped me from doing my exercises on and off for several weeks, which was frustrating. I’ve told both my doctor and my physiotherapist but no news yet on whether there’s a problem – other than general chronic pain – and what to do about it.


FEBRUARY 2024

The back pain only got worse and was dramatically limiting my exercises as well as my general movement; it was also waking me up at night. I was almost constantly on the only painkillers that seem to make any difference but I can only take those for a few days at a time before I have to take a break. That really sucks because then I undo all of the good – all of the recovery – that the time on painkillers has allowed me to do. So it’s a never ending cycle without any progress. The physiotherapy and hydrotherapy that I did manage to do were really hard and not enjoyable at all.


So it’s been a year of rough ups and downs, steps back and forward and back again. I’ve had some more support this year but I feel like the pain has been worse and consistently so, particularly in my back. I don’t really know what to do at this point but nothing seems to help it. I was hoping things would be better by now (especially because I want to really be able to enjoy the Taylor Swift concerts coming up) but they feel worse, at least to me, than they did at the beginning of the year.