Chronic hobbies – one chapter at a time

I’ve been learning a lot since I started understanding more about the reasons behind my chronic pain and lack of mobility.

Despite having multiple diagnosis that included degenerative disc disease and sacroilitis, pain and fatigue that occurred in different areas, such as my joints, arms, shoulders and legs, seemed to be an anomaly, and made it hard for me to predict and manage.

When your mobility reduces you eventually accept that some of your favourite pastimes will be impacted, and that it might be a permanent change. For example, ten years ago it wasn’t unusual to see me running 10km a day around my local streets. I loved to run, but that passion is now something I only think about in my lowest moments. Losing the option to pick up a morning jog was like another bereavement, so I struggle to talk about it. Now it’s even simpler things that I miss, like the ability to take a brisk walk on a Sunday afternoon. Lovely moments that I used to adore with my partner, and usually the sections of life where we’d have the most fun. They’re gone. Forever.

As time passed I started accepting the simpler changes too, but when pain impacted much easier pastimes I began to feel quite bitter about it.

Writing and reading are intertwined in my life, if I’m doing one I’m also thinking about the other. Being able to research and draft a new article forms an important part of my online world, a new world where I’m still trying to find my place creatively. So when covid hit me the first time and my pain suddenly inflated up and out from my back and pelvis towards every other possible place, I found it impossible to sit up without experiencing problems and reading and writing became more challenging.

Yes, since December 2021 I have found some workarounds. Tweaking my meds, heat therapy, mobility aids at home and using joint supports and splints have all been helpful, but they have limitations. I’m probably one of a handful of people in the world who has a hot water bottle when the weather outside is over 30 degrees. The splints for my wrists and ankles are hard to put up with when I’m trying to draw or sleep. Not every solution fixes the problems completely.

But undertaking simple pastimes, like reading a book, should still be easy. Unfortunately that’s not the case, and even the most obvious joys are now a huge pain in the arse (sometimes literally!).

Holding a book hurts. Turning the pages with a hand that’s in a metal splint is difficult. Typing with a the brace on is impossible, taking it off leads to pain within minutes. Concentrating on words (whether written or being typed) and being able to compute them properly might take multiple attempts.

My books are steadily piling up next to me, begging to be read and only very slowly being chipped away at. My ideas for articles are scrawled on bits of paper and notepads and also piling high next to me. Just a couple of years ago I’d have sat up on the bed with my laptop and typed away for a couple of hours until I became too stiff to carry on. Even though time was limited, I managed to get a fair bit done then lay back, reduce my pain, and draw instead.

None of this is being managed well today, and I find myself increasingly frustrated by my lack of ability, which we now know is largely down to having Ehlers Danlos Syndrome.

There’s a huge impact on my mental health when I can’t do few the things I still love that feel simple. On many occasions I get the urge halted by a necessary splint, drowsy medication or plain old brain fog.

Luckily, I’ve found yet more workarounds.

When I write I do most of it on my phone, as I am right now. The smaller keyboard is manageable even if I keep my splint on, and it allows me to write more for longer. I still complete a final proof read on my laptop so I can see how it feels more officially – I’m not sure why but it feels like part of the editing process I shouldn’t drop.

With reading I’m taking it one page at a time, and sometimes I don’t read at all, I listen to an audiobook instead. No, it doesn’t hold the same nostalgia that I loved as a kid, turning each page and the magic of seeing a story unfold isn’t quite the same when you hear it instead. Saying that, there are more relaxing opportunities when you remove the need to get comfy with a book. Being able to close your eyes and focus completely is a new kind of enjoyment for me, and as it’s really my only option I’m learning to live with it.

But when I need that ‘real book’ fix I limit myself to publications that can be devoured in much smaller quantities. Quality fiction requires you to stay put and keep turning pages, but short stories and biographies told in snapshots are easier for me to manange. My current biography – a book by a hospice nurse in the USA – is written as a series of short pre-death experiences, and can be stopped and started at any junction without feeling like the momentum is lost.

Maybe EDS has taken a huge amount from my enjoyable life, but workarounds do make it possible to keep having fun. It’s just different, and I guess different always takes some adjustment.

So if you’re wondering why my blog is less busy, or why my posts seem shorter these days, it’s because I just can’t keep up without sacrificing my comfort, and I’m exhausted at trying to keep up the juggling act.

If you’re missing reading the same as me then joining audible and finding some free books might scratch the itch instead. Podcasts offer a similar experience, with a variety of genres to suit every mood and all at no cost.

Losing the things you love is a grief we all have to suffer at life’s various junctions, and some are harder than others to bear. Over time some easy adjustments might make the changes less acidic to stomach, and give you different ways of relaxing as you come to terms with the physical pain you’re experiencing.

Thanks for reading. Have a safe, comfortable and enjoyable day. 💜