I have a condition called Cerebral Palsy, it’s a chameleon of a condition, changing drastically and affecting those who have it in varying levels of severity, some have difficulties speaking, while others. Like me have difficulty walking. In my case it effected my ability to walk completely and I use a manual wheelchair to get where I need to go.
I have increased muscle tone in my legs, meaning that they are always turned ‘on’ and ready for action, I have never stood and so the tendons in my legs are shorter than yours and I am, when I do stand aided, on my tip toes for just a few seconds. Bottom line is my legs are shit.
As a result of being in a wheelchair all day, my body is in some sort of weird spasm most of the time. When I was younger, I’d never notice my pain much, but as I have grown up, I realised I am in constant pain all the time – Each day my pain levels vary, and on the very rare occasion that I’m pain free, I know that the following day, or the days after my pain spike is going to be big.
I am a young woman who is determined not to be too severely hampered by pain and so each day is, like for so many with a disability, a balancing act. I do everything I can to elevate the pain I have, and I have learnt to work with it and not against it. I take CBD Oil daily which really helps, early nights to stretch out my body that’s been crumpled up all day, and mindfulness are a regular part of my routine.
As is often the case when I was at school as a young person with a disability, there was lots to explore to help my body, we tried most things that didn’t require surgery.
I stood everyday Monday – Friday for what seemed like an eternity, but was in fact, only 90 minutes in a standing frame, similar to this, it was the equivalent to torture there was no easing you in gently, two people would push, pull and manoeuvre me and many of my classmates into these frames, being told to ‘push up tall’ as the Velcro straps where done up tight around my torso and hips, no room to wriggle or settle myself into any sort of comfortable position, we were taken into class, and left for an hour and a half to concentrate on the first lesson of the day, whilst in the most indescribable pain.
It was no use trying to get an early release or a day off standing, if it hurt they’d say ‘You’ve not been in there long, try a little bit longer’ or the classic reply of ‘5 more minutes’ if I’d been the lucky one to be stood in the eyeline of the classroom wall clock, we’d pray for a medical visit, a swimming lesson or a school trip that would get us out of standing, the only thing that would guarantee me getting out of the stander, was being sick, I’d never made myself sick on purpose but the sensation of standing would make me dizzy and sick. Delightful.
I was 15 when I stopped standing, My Parents and my physio couldn’t see the benefit, I’d had a growth spurt and it seemed like my brand-new boobs were playing havoc with my already limited ability to balance. I can’t say I wasn’t overjoyed at the fact I didn’t have to stand anymore.
I left school, attended college and university with never any mention of standing again, but as I said earlier, I was getting older, and my pains were more noticeable. The turning point of this pain management was one evening, Mum had made me an appointment with the Doctor, I’d been miserable and irritable all week, weeping and yelping in pain, not sleeping and at the end of my rope, the pain spikes had started to affect my mood with my family and I decided to do something about it
During my GPs appointment my lovely GP asked me to straighten my leg on the bed and was shocked when I couldn’t. He’d never seen me out of my chair before and once he did the first words out of his mouth was ‘You need to see a Physio’
That was three years ago and since then, I know see a neurologist annually and am currently on my second round of Physio and Hydrotherapy.
Before my first physio, no physio had touched my body for a long time my core was no existent and I spent a lot of time sat out of my chair unaided learning to turn my muscles on and balance it took so much concentration that it felt like my brain was boiling and after that set of sessions we started to see some gradual improvement.
I have now gone back to start my second set of physio, I realised I was developing a new ache as I started to learn my Level 1 in British Sign Language, my physiotherapist team are amazing and I told them my concerns, that I believed Sign Language was making my hands worse and they put my mind at rest, telling me it’s just the muscles getting stronger. They have given me exercises to help both my hands, core and stamina – which help so much.
Conversations later turned to long term maintenance, and I mentioned how I used to stand as a child, how it was awful and how despite all that, I might, possibly like to try it again.
At the time of writing this, I am still attending weekly physio sessions and this week stood up for precisely 28 minutes today with very few wobbles in my legs. I still can’t get used to the dizziness and the sick feeling, while I’m stood up, and my legs and hips are killing but. I think my legs are getting a teeny tiny bit more used to standing in a frame.
The last few weeks, my brain, upon realising I’m stood up for the first time since I was 15, panics and sends my legs into spasms, that make my feet jolt and feel like I’m falling, today my brain, for the most part remained calm. My legs still shake uncontrollably at the end of a session
I am convinced that my constant pain that happens because I’m in a wheelchair, directly affect my confidence and mental state. If I’m having a huge pain spike, I feel low and if I feel low, I start to feel useless, which effects my confidence
Standing is NOT comfortable, it’s painful and if I’m honest, just recently there have been times when I’ve just not wanted anyone to stand me, but I’ll keep going, because I know all the discomfort now will be worth it and I know the standing is helping.
I’ll never stand unaided and I will never walk but I can’t tell you how freeing standing in that frame is. I almost never want to sit down