[image description: Ben has glasses on and is smiling, he’s wearing a patterned blue t-shirt, black jeans and a rucksack standing in his living-room with two smart crutches which are green]
I ask myself this every single day, I have to analyse my whole body and my day ahead as to whether I will be able to walk pain free for long enough or I’ll need a bit of help. For the past few months it’s been a yes to the question, yes I need my crutch(es) or stick so I can go outside. I’ve used a stick for around a year and a half now and only just this month got my first pair of smart crutches which has taken a lot of stress off of my wrists and elbows.
I’ve had hyper-mobile joints for as long as I can remember, and looking back I’ve had pain for longer than I originally thought (I had neck and knee issues as a pre-teen). When I was a kid it was a party trick, I was just ‘double jointed’ but around 2 years ago I began getting more and more achy when I did anything strenuous. It soon developed into joint-hypermobility syndrome (AKA hyper-mobility spectrum disorder), where one or more joints hurts due to hyperextension (bending the wrong way). For me pretty much every joint is effected in one way or another, my worst are my hips, knees, fingers and wrists.
I’ve had to change a lot in my life because of it, I can’t/don’t go out to as many gigs as I used to (which was a lot of gigs), I’m not as spontaneous as I used to be, (I have to plan my week depending on what level of activity is needed and what I can manage, I’ll write on spoon theory another day).
I am however much more in tune with my body and the consequences of my daily choices, I’m more empathetic to people in pain. I’m kinder to myself and to others. I have to sit down in the shower and when I do the dishes/make a cup of tea/cook because I can’t stand for long enough but thats okay because there’s always baths and I’m still a mean little cook. I take more time to rest than I used to because I’m learning not to just push through pain like I would have done a year or so ago. Pacing is something I’m specifically working on right now.
When I was younger, because of wider societies influences, I felt sorry for people using mobility aids, especially if they were young. But since growing up and especially since getting sick at a young age, that’s changed dramatically. It’s a freedom, without my crutches some days I’d be stuck in my flat. Society has told us to feel sorry, to pity people who aren’t able-bodied, it taught me to feel ashamed and embarrassed for having to order my first stick, even though I told myself it was the right thing to do (and it was), I believed that it was a failure than I was needing one at the age of 20, that I was ‘giving in’ and wasn’t trying hard enough to not ‘be sick’ (what ever that even means). 2 years later I’m relearning myself after all the internalised ablism I’ve absorbed from the media, that disabled people aren’t 2-dimensional beings who can’t be seen as a person away from their mobility aid. Me using my crutches isn’t me giving in or (quite literally) using a crutch instead of ‘getting better’, this is my new normal. It’s okay to need change.
I do use painkillers, I try non-medical methods of pain relief first, like ice/hot packs, CBD oil (which has helped dull things recently), hot baths with epsom salts. I have also seen a physiotherapist who gave me things to do, which recently I’ve had to stop because they were causing more harm than good but I’ve gone back to it with a new approach of gentle yoga and very light exercises to try build strength back up. I’m also eating healthier in order to lose weight to take some pressure off my already unstable joints.
Like with everything there are good days and bad days, it has been getting progressively worse this past year, things getting weaker, pain getting stronger but it’s just another thing to adapt to. I don’t know what it’ll look like in the future so all I can do is work towards having as much of pain free day as possible and take it one day at a time.