About Me

Gemma Benefer. Radio Enthusiast. Feminist. Hard-worker and Perfectionist. Lover of Music, Camping, Musical Theatre and Films. Bookworm.

Sunday, 2 February 2014

Just Call Me Hop-A-Long!

Many people who know me will already be aware that I have a "dodgy leg" as I put it. For those of you who don't know me (or don't know me yet!) you'll soon be made aware of it. Truth is, it is a little dodgy but I try not to let it get to me. This is the first time I've really spoken about it before but I guess it'd be good to try and help people understand what is actually wrong with it!

My left leg collapsed under me when I was 12 years old. I was on the Eye Toy on Playstation (blast from the past there!) and it literally just gave way. I limped around the house for a bit and we went to see a doctor but they dismissed it. I struggled with it for a few more days before I went back, saw a different doctor, and they referred me to hospital. In all honesty, it's a bit hazy what exactly happened but all I know is that I ended up in hospital for a week. I went in walking / limping, came out on crutches not being able to walk at all. They placed my foot in a weight thing, which basically knocked my leg for six. It was so painful. In the end, I had to learn how to walk all over again! 

I've been in and out of physio since it happened. It's been quite horrific to be honest! It's involved a lot of gym work (rowing, cycling, weights etc...), I've been in the hydropool, I've had them pulling and twisting my body in all sorts of ways, and then had a temporary cast placed on it. Not all of this happened in one go though. You see, because this was happening over my teen years, I was still growing and my body was adapting so I got taken off the physio list many times and had to fight to get myself back on it. Their excuses? It's growing pains. It's a nerve issue. It's a muscle problem. It's arthritis. It's your bone cartilage. And the worst one? It's psychological. That was the hardest to hear. I came out of that session in tears because to me, no-one was listening, no-one believed me, and I was in such pain with it. Each time I came out I still couldn't walk properly. I even got asked what school was like and what my home life was like as if it was that which was to blame! 

Needless to say, I lost all faith in the physios and doctors. My leg still wasn't right and I was still really struggling. I live with a constant pain even now and if it's too much then I take painkillers (but I don't want to rely on them all the time). When it's really bad I can't put any pressure on it or walk or even have anyone touch it without it making me sick. But then the next day, it will be completely fine! You can imagine how difficult it is to try and make people understand why one day it's fine and the next I'm limping and then the day after I'm running around fine. People think I'm lying. People think I'm making it up or I'm doing it for attention and it just isn't the case. I can't understand why it is either!

I got a diagnosis last year when I was 20. Finally! 8 years of treatment, excuses and pain and I finally got a name for the condition I have. It's called RSD or Reflex Sympathetic Dystrophy. It's also known as Complex Regional Pain Syndrome. Now, I didn't get much explanation for it as it's a new condition which is still being researched and I was told to "look it up". But essentially it's a form of arthritis. I got put back into intense physio and started getting treatment, although they found something else. You see, my new physio is genuinely interested in me. I know that sounds strange, but she clearly cares about the problems I've had and wants to help me to get better and I have absolute faith that she will do her best. Anyway, she found that because of all the physio and little help essentially that I've had over the years (and the fact that I've had to cope with it myself) my body has actually adapted itself to make it easier for me to walk. Unfortunately, this has just caused more problems. My left side has actually dropped; There is a 2cm difference from the bottom of my shoulder blades to my ankles. It might sound small but it actually creates a big problem. I now not only have pains in my knee / ankle / leg, but it's also affected my hip and back. So she's trying to help this misalignment that I have which could take a few years to the rest of my life. It doesn't help either that my physio is back in my hometown whilst I'm in a different city for my uni work. I now have to try and do the physio on myself and it's very difficult!

You can probably imagine what I'm having to live with. It's nice to actually have a reason for everything that I've had to live with, but it's so difficult to actually explain to people what I have. It's also annoying that my leg can just go with no notice at all and I can be bed bound for hours to days and then be absolutely fine and people wonder how that can be. 

I don't let my condition affect me though, or at least I try not to. Like I say, I have pain killers in case it's bad but the majority of the time I just push on. I have a knee support for long walks and my trampolining because the only time I stop my sport is if it's too painful. The thing is, life's too short to sit and wallow about what's wrong with you. I can drive with it, I can walk for the most part but as soon as it's icy I get really nervous about walking! A simple tug or pull can set it off and it's a nightmare to have to try to avoid things that might set my leg off without letting it affect my life. 

So yes, I have a dodgy body essentially. It sucks but that's life. I get on with it and to be honest, even though it gets me down and can get really frustrating, it's made me appreciate what I do have. I can't remember a time when my leg was normal, but I guess this constant aching is the new normal for me. So if you see me limping or walking dodgy, at least you know why. Just call me hop-a-long! 

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