Training With Disability
The more I grow this site, the more I learn that all types of women work out. It has inspired me no end. As such, it has become increasingly important to me that all those women are represented. I realised recently, that I have not yet given a voice to those women with disabilities who are figuring out a way to live active lives despite the body restrictions they may have. So I reached out to Katie Jayne Vale, whom I follow on Twitter. She has Hypermobility Syndrome/Ehlers Danlos Type III. After years of being told she couldn’t work out, last year she started her journey back into an active life. Here, she tells her story.
Guest post by Katie Jayne Vale
By the age of seven, I’d broke my arm three times. It was always assumed that I was just clumsy. We now know otherwise.
HMS / EDS is where I have a lack of collagen in my body. Therefore the ligaments in my body don’t work. They’re like over-stretched elastic bands, so pretty useless really. This effects my entire skeletal frame, plus my organs.
I dislocate regularly and have subluxations on a daily basis (where the joint isn’t fully in the right place nor is it out). I am in pain 24/7 and can wake any day with random swelling, bruising or dislocation of any joint or disc in my spine.
My organs are effected too. I have heart palpitations, I vomit a lot because the muscle at the top of my stomach doesn’t work. It also effects my bowel and bladder. But it’s not all doom and gloom….I have really gorgeously, soft skin!
As we had no idea I had any health concerns, I started dancing when I was 3. I was a natural and I loved it. I continued to do more classes and exams and was becoming an extremely competent dancer. By the age of 12, I was dancing five days a week, 3-5 hours per day. At show/exam time this increased to 7 days a week.
It was around this time that I started having major problems with my hips and getting daily pain. I told my parents and was told it was just ‘growing pains.’
After about 3 months, I’d had enough. I got my mum to walk behind me down the middle of our garden whilst holding my hip joints. I remember so clearly turning to face her and she was speechless and drained. With every step I had taken, I had dislocated my hip but managed to get them back in for the next step.
We went to my GP who stated that this extreme hip flex was due to my ballet dancing. In ballet you turn your feet out and he said I’d forced my hips too much & thus this was ‘self inflicted.’ I was told that my hips were in such a bad state that it’d be a miracle if I reached 40 and wasn’t in a wheelchair.
My GP refused to send me for any treatment unless I gave up dancing. I wouldn’t even entertain that idea. I loved dancing and would cope. And so I did.
Fast forward 9 years and I’m living in Spain. I had some knee pain for about six weeks, then one morning I woke to find it had dislocated in my sleep. I was taken to hospital & put in a cast.
When I returned to the UK I demanded answers from my GP. By this point, I had a catalogue of unexplained injuries, so they sent me to a rheumatologist and finally I was diagnosed. The relief was insane! Finally I had a name to my condition and no one could tell me I was exaggerating, lying or being overly dramatic.
I carried on working as a performer. Now I had a name for it, I thought I could treat it myself & carry on as normal. Mother Nature decided otherwise.
After about four years of performing professionally I had to retire from the stage. The devastation this caused me is the most pain I have ever felt, both physically & mentally. My body had let me down. The one tool I rely on couldn’t cope anymore and I felt shame, humiliation and anger.
To get me through a show day, I was out of my face on up to 12 prescription pain killers per day. On an off day I would just lay in bed, unable to move. I was 25 and my mum was having to get me in and out the bath, get me dressed each day and do all my housework. That’s humiliating.
The next few years are a blur of me doing random jobs, paying for lots of alternative therapies and learning to cope with day to day jobs. It also involved putting on a lot of weight, because I was doing no exercise at all.
When I hit 27 I decided enough was enough and I began to sort myself out. The more muscle tone and fitness I have, the better for my condition. I knew what I wanted to do…..get back to exercise!
I had intensive physiotherapy and a huge amount of alternative treatments. My Physio has said that my body is so weak I shouldn’t be able to stand, let alone walk, but because I was a dancer I learnt to move my body as I think it should, so I have dealt with it.
After a few years of this treatment I was ready for a personal trainer. My goal was to go one month pain killer free. My trainer specialises in rehabilitative care and I had to start at the very beginning. My first weeks homework was to prep me for my first plank. I had to lay on my bed face down & squeeze my stomach in for 30 seconds. I can now plank for 90 seconds & do variations.
Part of me was embarrassed that I was doing this simple stuff. I kept having to tell my trainer that I had once been fit & not to judge me for what he was seeing in front of him now. He didn’t! He just encouraged me.
Within a year, I had done 4 months pain killer free. I had days during those months where I was in agony but didn’t want to cave. I now see things differently – if I need pain relief I take it, probably twice a week.
On average I now use crutches one week a month. This is a new development for me. That first day on crutches last summer was a sad day; I went from sobbing hysterically to gorging on chocolate. Now I don’t even think about it – if I need them, I use them. I have learnt to accept this help and assistance. I need to stop being embarrassed by myself but the stigma is possibly worse than the physical effects.
I’ve worked hard on my body & the fabulous thing for me now is that I’m able to go to a regular gym on my own without guidance. And I’m back at dancing & am currently training for new exams *woo hoo*
My first day in the gym was scary and nerve wrecking. There is a huge element of fear that I’ll injure myself. That will never leave me; but I am loving it. I cannot explain what it feels like to go without exercise for nearly 10 years, through no fault of my own and now to be able to – it is over whelming!
Of course I have to know my limits, I have to be extremely careful and I have to know if I need a day off. I have learnt to read my body and I listen to its every signal.
I have a new 12 week program that I’m following, but if I need a day off or I can’t do what is planned, then I don’t. It’s taking longer than the 12 weeks to do it, but I will do it.
This week, for the first time, I went to the gym on my crutches. Someone helped move a bench and weights for me and I did all my arms & shoulders! At least I could say that day I did some exercise and worked up a sweat.
My goal now is not to go pain killer free, I know that I need assistance. It’s not to go without crutches, I know I need them sometimes. But I don’t want to be in a wheelchair at 40; I refuse point blank to be. And if that’s not incentive enough to get my butt to the gym in the morning I don’t know what is! And I’m really proud to say out loud now that once again I love exercising & I’m never stopping again!