Seeking Help For Chronic Pain (Year Two)
Posted on October 21, 2023
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.

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.
World Mental Health Day 2023
Posted on October 10, 2023
If you’ve been following me for a while, you’ll know that I find awareness days, like World Mental Health Awareness Day and Mental Health Awareness Week, really hard. I find it really frustrating to watch so many people – businesses, celebrities, every man and his dog, etc – jump on the #MentalHealthAwareness bandwagon just to show that they really do care about mental health, to prove that they are socially engaged and empathetic (before reverting to their previous routine of never discussing the subject). I have absolutely no problem with people not making it their primary social cause; I do have a problem with people trying to claim social credit by talking about it for one day a year.
I also struggle with the consistently vague annual themes that many charities and organisations stand behind. This year, the World Federation for Mental Health announced that their theme for 2023 is ‘mental health is a universal right,’ to which my immediate reaction was, ‘No shit.’ What is that supposed to mean? That everyone deserves to have good mental health? That everyone should have access to mental health support? Isn’t this blatantly obvious? The problem is that we’re stuck with outdated medical education, out of touch care providers, no support services, and no money to fix any of it. So how does this vague statement help? What does it change? We need more. We need better. We need support and education and resources. We need a government that cares about the people it serves, that cares about the wellbeing of the people it serves. But instead, we have a group of entitled, morally-bankrupt, evil narcissists who only care about money and power.
I’m sick of feeling so angry and I’m sick of feeling so powerless. I doubt there’s anything that can truly change that, aside from massive institutional change. But it doesn’t seem like that’s coming from the government any time soon so I’m trying to channel my focus and my energy and my feelings into doing what I can as an individual. The proceeds from my single, ‘Invisible,’ go to YoungMinds of course but that’s in place and I want to do more. I want to do everything I can. So, this year, I decided to raise money for Mind (Charity Number: 219830) by swimming 5km. Because of my hEDS, I knew I wasn’t going to be able to swim more than a kilometre at a time without potentially aggravating my chronic fatigue and chronic pain so I planned to do the 5km over a series of nights, completing the 5km in time for World Mental Health Day on the 10th October. There’s a nagging voice in my head that keeps snarkily pointing out that I should’ve been doing this for years but I know logically that I couldn’t even have done it last year because of both my physical and mental health. So I’m trying not to beat myself up for not doing it sooner. I’m doing it now.
I really had no idea what to expect in terms of raising so I set it at £150. That seemed doable since most of my friends are still struggling financially post university and we are all in a cost of living crisis. While this also affects the more financially established people in my life, I knew that there were people who were more able to help me achieve this. That, I think, is a big part of why I didn’t set a super ambitious target; the cost of living crisis is hitting everyone hard (apart from the incredibly wealthy Tory politicians, it seems) so I felt that raising any money at all was an achievement; I was deeply appreciative of every donation, whatever the amount. I figured out the details and set up my JustGiving page:
“For World Mental Health Day 2023, I will be swimming 5km in aid of Mind (charity number: 219830), a charity that supports those struggling with their mental health. As a person with Ehlers-Danlos Syndrome who suffers from chronic pain and chronic fatigue, I will be swimming this distance over a week in order to avoid worsening these conditions. It has taken me over a year to reach this point, where I am physically fit and healthy enough to do this, and I want to celebrate this and honour World Mental Health Day by challenging myself with this swim and raising money to support a charity that helps those who are struggling with issues that I have struggled with myself.
I know that times are really tough and that we are all affected by the cost of living crisis but even a few pounds can make a difference. If you can’t afford to donate, please help me to reach more people by sharing this page on your social media.
Thank you for reading this post and for whatever help you can manage. I truly and deeply appreciate it.“
And then it was time to swim the thing!

SWIM 1
The first swim was at the longer, lane swimming pool that I go to, which meant swimming fifty lengths to achieve the first of the five kilometres. I had, in typical fashion, slipped off an uneven curb earlier in the day (right before my first ever sponsored 5k ever, of course); fortunately I was fine, if a little sore, because I wasn’t changing the plan for anything. I’d swum the distance a few times already and found it a challenge but a doable one; I expected the same for each of the five nights. But it was surprisingly smooth-going. I was tired at the end, my muscles a bit shaky, but I was excited and energised by it; I couldn’t wait to do the rest of them.
SWIM 2
For the second swim, I was in the smaller pool, the one that’s more suited to and where I usually do my hydrotherapy exercises. It’s short – only 8.5m – so the amount of times you have to turn in order to swim a kilometre can get a bit tedious but it’s a beautiful little pool. This kilometre was harder. Given that it was the second of two nights swimming a kilometre, I was tired before I started and my arm and leg were actually more painful than the night before, presumably because I hadn’t been able to rest them post fall. So it was a bit of a struggle but I made it! Two down, three to go!
SWIM 3
I had a night off and then I was swimming again, another kilometre in the small pool. Having had a break and some time to rest my sore arm and leg, I felt better and stronger in the face of the swim and, unsurprisingly, it was easier than both I’d done so far. That said, I was exhausted by the time I was done and fell asleep on the sofa when I got home. My body definitely isn’t used to this. But it was very exciting to have passed the halfway point! And I was at almost £500 with my fundraising when I hadn’t even expected to break £200!
SWIM 4
For the fourth of the five kilometres, I was back in the long pool. Despite having a few days off, this one felt really hard: it wasn’t that the lengths felt longer but more that my arms and legs were heavy and tired and it took more effort to pull myself through the water. I think I got tired faster too. But I managed it, even if only just in time before I had to get out of the pool. Four kilometres in a week! Even though I was exhausted with another kilometre to go, I still felt energised and excited about going to the pool. And so motivated to finish the 5k.
SWIM 5
Because I’m me and apparently really can’t go a week without falling over, tripping on something, or colliding with a door frame, I managed to trip in the street on my way back from the pool the night before (because I was so tired, I think). I twisted my ankle and landed on my knee and although I hadn’t done any serious damage – thank goodness – I did go into the last kilometre feeling sore and a little wobbly. But I was so excited to do it, both to complete the challenge and fulfil the promise I’d made to Mind and to all of the wonderful people who’d donated. I was so proud to be earning that money, the total having reached £500 that morning!

1km later and I’d done it! 5km! It felt so good. It hadn’t felt as hard as the night before either, maybe because I was back in the groove, maybe because I was so close to achieving the goal and was therefore more motivated and noticed my fatigue less. Whatever, it was done and I didn’t feel too exhausted to actually get out of the pool. The lifeguard was really nice about it when we realised we confused the time of our slot and even donated before we left!
By the end of the day, with the swim completed, the total donation sat at £510. I was very, very proud of that, having never thought I’d reach such a number. And I was really proud of myself: I’d done it. I’d completed the challenge I’d set for myself. I’d swum 5km when, just several months ago, I wouldn’t have been able to swim half that. It’s a big milestone in terms of my fitness.
It’s been a really positive experience, even if – at times – I was tired or sore or anxious that I wouldn’t raise the money. So much work has gone into the week, into these five kilometres; it’s taken so much time and effort to get physically healthy and fit enough (plus in a healthy enough mental state) to do this. I’m really, really proud of myself for getting to this point and I’m really, really proud of completing the 5k; I can’t think of a better way to celebrate all of that than by challenging myself with this swim and raising money to support a charity as important as Mind.

There is still time to donate – the page is here – but at the time of posting this blog, the total raised is £620. That is so incredible to me and I’m so moved by the generosity of human beings and their desire to support each other. Thank you so much to everyone who has donated and to those who weren’t able to but shared the link, helping this fundraiser to reach a wider audience. While I’m sure there are many, many things that this money can go towards, these are some of the ways that the money we’ve raised together will help people…

As I said, I’ve been struggling with awareness days like this one for the last several years, feeling powerless and frustrated. But this year has been different and that’s because of this fundraising challenge. Not only am I proud of completing the physical challenge and blowing the fundraising target out of the water (that pun was originally accidental but it’s too funny to me to take out), I feel like I’ve made a difference. It might be a small one in the grand scheme of things but it’ll be no small thing to the individual(s) Mind is able to help because of this donation. So, with that in mind, Happy World Health Awareness Day. We made a difference.
Birthday Rules (2023 Edition)
Posted on October 7, 2023
Birthdays have been a struggle for me over the last few years, triggering a lot of anxiety; in fact, they trigger so much anxiety that I can barely acknowledge them, let alone celebrate them. I’ve been trying to just ignore them and let them pass with as little fanfare as possible but that’s a surprisingly hard thing to do. At some point, it seems that birthdays, birthday plans, and so on, became public property, a topic that you’re obliged to talk about or risk appearing rude or uptight; someone always wants to know if you’re doing ‘something special’ (with the best of intentions, of course – I’m not trying to guilt trip anyone). Even shops and organisations send you emails wishing you a happy birthday. You just can’t get away from it.
So, to make it as manageable and an actually enjoyable day, I used the Birthday Rules I found on Tumblr years and years back. I like them as a way curating your birthday experience, I think because you can make it as big and extravagant or as low key and chilled as you want, as you’re comfortable with. Both can be memorable and enjoyable; it wouldn’t surprise me if it’s the attempt to straddle both ends of the spectrum that can leave a birthday, or any celebration, feeling emotionally weird.
So, the basic idea – if you haven’t seen my earlier blogs using this technique – is to do something you wouldn’t normally do and buy yourself something you wouldn’t normally buy, making each birthday unique and special. I like that it doesn’t necessarily impose the birthday connection: the focus is on making the day one to celebrate and treat yourself. So I tried to keep my mind on that and on spending time with my family, rather than all of the anxieties that my birthday triggers.
Rule #1: Do something you wouldn’t normally do.
A while back, I was scrolling through Eventbrite and discovered an Equine Facilitated Learning workshop called Harnessing Assertiveness, where attendees were guided through confidence building exercises, based on building relationships with the horses of the HorseSense UK herd. I have always loved horses and I struggle desperately with my self-confidence and self-esteem so this seemed like both a fun and fascinating experiences that could be really helpful, as a one off or a starting point on the path to something bigger. The workshop was originally supposed to be for six people but it ended up being just me, my Mum, and Becci, the founder and facilitator. That was a little daunting because I hate being the centre of attention – yes, I know how weird that is given my love of performing – but it ended up being so special because we could work at my pace and according to how easy or difficult I found a certain exercise. That was really amazing.
I could happily document it minute by minute but that would very quickly become a very long blog. Every step we took was designed to integrate us into the herd, to build relationships with the horses. We greeted them and let them get a sense of us (after which I swear they had a little conference, standing together and ultimately deciding that we were perfectly acceptable guests in their herd) before learning to communicate with them more directly. They’d step into your space and you had to hold your ground, showing them that they could depend on your strength and certainty, and then you learned to move them in the same way, the way they move each other, using your presence to convince them to move because you are a part of the herd and you wouldn’t do so without good reason. It was utterly fascinating. And then, suddenly, we were saying goodbye to them and sharing a moment with each horse, thanking them for trusting us. Almost two hours had gone by but it was like everything had just… stopped. It was just us and the horses. It had been such a calming experience that it was kind of jarring to have to go back to the real world.
As I said, it was an amazing experience and I’d love to go back and spend time with the herd again, maybe in one of the Calm 4 Adults sessions. But whatever happens going forward, I’m so grateful to Becci and the horses – Dainty, Squirrel, and Jim – for a really special way to spend the day. There’s not a lot of calm in my life (or any at all really) so this was a much enjoyed experience and a much cherished memory.
Rule #2: Buy yourself something you wouldn’t normally buy.
Having been frustrated with my camera for a while now, I did some research and discovered that the model had been released in 2011 so it’s not exactly surprising that the quality of photos I’m taking feel soft and low quality. Frankly, I’m amazed that I’ve been pleased with them so long, given that it’s over a decade old! I’ve been researching a replacement on and off over the last six months or so with the plan of getting a new one at some point before going to The Eras Tour next summer. But I’ve actually got several pretty exciting concerts before those shows and it seems a shame to miss out on taking gorgeous photos at those because of some arbitrary deadline. Concerts are where I most enjoy taking photos, after all. So, armed with my research on focus and zoom, I searched for the camera I’ve returned to multiple times, checked the specifications one last time, and ordered it. Ah! Spending money always really stresses me out, even with all of the reasons why it’s not a terrible idea, but I’m pushing through and trying to focus on how lovely it will be to have beautiful photos after my gig, Maisie Peters in October.
Physically and emotionally, I was exhausted afterwards (not that I got a lie in with Izzy tugging at my sleeve bright and early the next morning). It was never going to be an easy day but I think that, given everything going on in my head, it was as enjoyable as possible. It was certainly very special, with good memories to keep and good memories to make.
Finding Hope
