Finding HopeThe First Six Months of Hydrotherapy
Posted on August 13, 2022
When I was first diagnosed with Hypermobile Ehlers-Danlos Syndrome back in October 2020, hydrotherapy was recommended both for general fitness and muscle strength (which would, in theory, help with the back and leg pain I was struggling with) and to build up my core muscles, which are a notoriously weak area for hypermobile people. I was up for that since I’ve always enjoyed being in the water but COVID made the whole process very complicated and very slow.
As far as I can tell, with the way things currently are, it seems that the way to get a referral for hydrotherapy is to be referred for physiotherapy and then a physiotherapist assesses you and refers you on to the hydrotherapy department. I’d been referred for physio three times, I think, by three different doctors between May 2020 and when I finally got an appointment in November 2021. I find myself feeling a level of righteous indignation over waiting eighteen months for a simple referral, especially when I was in pain pretty much every day, but I know it was all more complicated than that. COVID was the obvious cause for the delay but the NHS waiting lists are also incredibly long anyway. But, as soon as it all started happening, it all happened at once.
At the beginning of November 2021, I met with a physiotherapist and he referred me on to the hydrotherapy department and at the end of the month, I had an appointment with them. I will admit that, after waiting eighteen months for an appointment, I was a bit appalled that the appointment consisted of just a half hour run-through of exercises to do without a huge amount of guidance. But this is how the system works and I’ll take what I can get.
While I continued swimming in my ‘normal’ pool, I struggled to find a pool that allowed me to do all of the exercises I’d been assigned: the height of the water needed to be within a certain range, I needed to be able to walk in the water, I needed a step of a specific height and width, and so on. And finding a pool that fitted all of the requirements was difficult, and that was without all of my COVID related anxieties being factored in. We finally found a pool just as Omicron started rearing its head and I had a meltdown leaving the first session; I was massively overstimulated and my anxiety was just overwhelming. Those weren’t exactly fond memories that I was keen to revisit but it wasn’t going to work anyway as the steps didn’t allow me to do the step related exercises and there are too many of those not to have access to the right kind of steps. I was managing a modified version of the exercises in my usual pool while we searched for another hydro-friendly pool but then Omicron hit in earnest and we all retreated inside to insure Christmas could go ahead as planned.
From December 2021 to early March 2022, I was incredibly unwell because of the ADHD medication I’d been trying, too unwell to swim at all. But, in that time, my Mum had found another pool. The first session went well (although it was really hard work after so little movement for a couple of months) and the set up of the pool meant I could do all of the suggested exercises. I got a few sessions in before I left for Nashville in late March.
Back from Nashville and semi-recovered from the jet lag in late April, I got back in the pool, both to swim and to do my hydro exercises. It took a bit of work and scheduling but after a while, I managed to build in two sessions a week while I got used to the routine and started building up my strength and stamina after so little proper exercise for so long. I’ve had multiple conversations with multiple health professionals about my tendency to throw my all into stuff and how I need to take things slowly if it’s going to actually help so, even though it’s very frustrating, I am trying my best to push down that irritation and just focus on the exercises.
So, that was my first six months of hydrotherapy. There’s a few months between where this post finishes and where I am now but I thought those first six months were important to document. Since then, I had to stop using one pool and tried out another – which I love – despite difficulty actually getting out to swim because my mental health has been so bad.
Although it hasn’t been a priority (and still isn’t one really – one thing at a time), I do want to find a new all-round gym since the gym I used to go to closed down after the multiple lockdowns. I want to get fitter; I’m just having to take a longer route than I would’ve previously thought.
Goals For 2022 (Part 1)
Posted on February 26, 2022
I had intended to set goals at the beginning of the year but honestly, I was feeling so terrible that I couldn’t even see twenty-four hours ahead, let alone six months or a year. So I decided to shelve the setting of goals until I felt a bit more… like myself, I guess. I’m not sure I’m ready to commit to anything too… much just yet, given that I’m barely back on my feet (something that still feels debatable some days). It’s hard to plan ahead. So, I thought I’d split this post into two this year: goals for the first six months and then goals for the second. Maybe. It does feel a bit like I’m just going through the motions but maybe that’s just what I need to do right now.
GET MY MENTAL HEALTH STABILISED – Between the pandemic stuff I was already carrying around, the burnout post-MA, the disaster that was the ADHD medication, and the anxiety induced breakdown I had at the end of January (plus having been unable to see my therapist pretty much since last May), I’m one big mess. I’ve started the Moclobemide but it still feels too early to say for sure whether or not it’s the right thing. I’m starting to write again though, which is a good sign. Hopefully I’ll be back at therapy in the not too distant future, plus there are some other options for support to consider. I just feel like, until I get my head sorted – or at least a bit more sorted – my life is on hold and I hate it. I can’t have a real life until there’s some resolution here.
GET BACK TO SWIMMING – I haven’t been very mobile at all over the last few months, given how bad my mental and physical health has been, and I’m definitely feeling it. My chronic pain over the last couple of weeks has been awful – back to the levels it was last summer – and now that I actually feel able to leave the house, I really want to get back to swimming and to my hydrotherapy exercises. I want to get fitter and I want to get stronger; the hope is that, the stronger my body is, the better my life with hEDS will be.
RELEASE NEW MUSIC – I’m so desperate (in a good way) to release new music. It’s been so long since the Honest EP came out and even longer since I wrote the songs. So much has changed since then, for me as person and as a songwriter. I am working on an album and that’s my real passion project but it is going to take time and I don’t want to keep anyone waiting that long. Hell, I don’t want to wait that long. So I am working on music to release before the album and while it’s taking a bit longer because of the last few months, it is happening and it is coming.
I don’t have an exact deadline for these goals, especially since mental and physical health don’t always adhere to any schedule you set for yourself. But I’m hoping that I can do these things – and perhaps more – within the first half of the year. Then, maybe, I can set a new series of goals that are a bit more exciting and ambitious once I’m feeling a bit more solid.
Now That I’ve Finished My Masters…
Posted on September 25, 2021
After two years of being utterly focussed on my Masters, it’s definitely weird not having something specific to work on, having no deadlines to meet, and so on. It’s strange but also a welcome relief: between working on the module of the moment and dealing with whatever the pandemic threw up, plus my health stuff, it’s been an exhausting time. While I’m excited to start working on the next project, whatever that may be, I do need a break first – to rest, recover, and recharge my body and brain – and there’ve been a handful of things I’ve been looking forward to doing for when I finally reached this point.
These are some of the things I’ve held on to when I really felt the exhaustion or my motivation dipped:
- Gentle days – I’ve spent the last couple of months at least working relentlessly on my final project; unless there was a very good reason, I probably spent at least seven hours a day working on various elements of it. I really pushed myself. Unfortunately, my prime working time seems to start around 7pm; that’s when I seem to really get on a roll and sometimes that meant I’d be working until after midnight (those were the really long days), which completely screwed up my sleep schedule. But even if I didn’t get to sleep until 4am, I’d still force myself up as early as I physically could in order to get back to work – my sleep schedule is going to need some serious overhauling. Now that I don’t need to do that, I’m looking forward to having some gentler days. I’m still happiest doing things but it will be nice to do them at a more laidback pace, for a while anyway. I might even sleep in occasionally!
- See more friends and family – I’ve been so buried in this project that I really haven’t seen many of my friends or family, not properly, for ages. I’ve started catching up with people, both over FaceTime and in real life, which has been so, so lovely but there are still too many people that I haven’t seen in far too long. So I’m looking forward to that.
- Read new books – Given that my difficulties with concentration make reading somewhat of a struggle anyway, I could barely manage the reading for my Masters, let alone anything for fun (not that I had much time for that). But I’ve got a list as long as my arm of books I want to read so I’m looking forward to getting into a couple of those. I think I’m gonna start with The Anthropocene Reviewed by John Green.
- Watch new TV shows and movies – While working on this final project, especially over the last couple of months, I’ve really only watched familiar things, using them as background noise – something that, most of the time, aids my concentration. I’m now thoroughly bored with all of them and, just like with the books, I have a great list of new things I want to watch, like Black Widow and Girls5eva.
- Swim more – Obviously this isn’t an immediate goal: I’ll have to build up my swimming in accordance with how my hEDS is affecting me. But I am looking forward to doing a bit more here and there and slowly building up. While doing the Masters, I was always aware of how much energy it required, balancing that against the energy I needed to keep working at the necessary pace. So it will be nice to push myself a bit and not worry about whether I’ll need a rest day afterwards, at least until I get into whatever the next project.
- Work on a new project – I have a lot of ideas in the works but they all depend on a bunch of different factors so, as of this moment, I don’t know which one will be my main focus (because, of course, I’ll still be working on the others) but hopefully it won’t be long until I do know and can get started. I’m really terrible at not doing things; I love having a project to work on.
- Release new music – Whatever project I launch into next, I want to keep releasing music. It’s been a while since I released anything new (the acoustic EP was a different kind of release, in my head at least) and I’m dying to put more music out. The Masters was just too big and took up too much of my brain. So, now that that’s done, I’m so excited to start putting stuff out again. I have multiple ideas for bigger bodies of work but those will take time so I’m thinking of releasing a few singles while I pull that next body of work together. There are always songs that I love but that don’t really fit into the concept of an EP or album project so it will be really fun to give them a life out in the world. So, stay tuned! (That pun was accidental, I swear.)
- Finish my album – During my final project, I started writing an album that I’m really excited about. I feel really good about it but there’s still a lot of work to do if I want it to be as good as I think it could be. With the Masters imposed deadlines now out of the way, I can go back to the songs and work on each one more slowly, using everything I learned throughout the process of the project (something that the earlier songs didn’t have the advantage of). I think this album could really be something and I want to give it all the time and attention it needs to achieve that potential.
- Get back to writing on here – I’ve really missed blog writing while I’ve been working and I’ve had to actively restrain myself from writing blog posts when I should’ve been working so I’m very excited to be back and writing here. My brain is bursting with ideas and I’m struggling to figure out how to fit them all in, which, all in all, isn’t a bad problem to have.
There are also things that I’m less excited to do but they are important and I’ve been putting them off, either because they took too much time and energy away from working or because I was worried about how engaging with them would break what felt like the very fragile hold I had on my concentration, like it would be impossible to concentrate on my project again if I stopped, even for a little bit.
So things like continuing my Pain Clinic appointments, getting the prescription for my glasses updated (my current pair are at least four years out of date or whatever the phrase is – it must be doing a number on my eyesight and it’s probably not unrelated to all of my headaches), figure out what’s going on with my therapy situation, make a definitive decision about my medication, and try again to tackle my Trichotillomania. None of these will be fun or easy but hopefully they’ll all improve my life in the long run so they are worth doing.
So there’s my list. I love a good list. I find that they help me organise my thoughts – my often very restless, whirlwind thoughts. It’s been a tough few months but I’m looking forward to diving into all of these things.
Finding Hope 