Woah! What’s that big thing coming towards me? Oh, it’s that Big Fate Train we sometimes have to face that can knock us right off the track we were seemingly happy on, setting us rather haphazardly on to another bumpier track, needing a lot of work on it to make the ride a bit smoother. I found myself facing this train when I was 18 years old. I was a fit, sporty, apparently healthy girl on the verge of becoming truly independent and going to University to study a Sports degree. Then I was knocked down by a complete collapse in my health and I had to cope not only with the physical changes to my body but also the mental ‘stuff’ of having to re-evaluate what my life was about after such a radical change of path.
I was never a sick child and loved playing over the fields with friends and climbing trees etc. Sports have always been, and still are, a major enjoyment in my life – whether participating or spectating – so when I first got an intense burning pain in my feet at the age of 17 I thought that it was from my new tennis trainers or something! I never imagined that I was dealing with the start of living with an auto-immune disease that relishes attacking my body – and my life path, as I had planned it, was not going to happen. I began to realise that the pain was of an arthritic nature; I was mindful of this from experiencing my Grandmother being in a wheelchair due to Rheumatoid Arthritis. I’m quite proud and hate to be a moaner, so whenever people saw me hobbling at school, I’d laugh it off as a netball or tennis injury. It’s strange really, when any of us have headaches or something mild, we are open to telling people but something changes when you know something more serious is going on…I think you don’t want to talk about it out loud as it will somehow make it real and tempt fate to make it stick around…all the while, you’re just hoping it’ll go away.
Fast forward a year and I am at Uni unable to be immersing myself fully in the student life (having a good go mind you!!) due to the pain and exhaustion I was feeling. By now, the arthritis was pretty much in most joints and muscles; I found it so difficult getting out of bed, having a shower and then the walk to lectures were a killer. One time I was so weak that I couldn’t pull my bedroom door open (a heavy fire door); even leaning right back using my whole body weight – until it suddenly came open and it threw me across the room. This really scared me – now I was being faced with the truth of how rapidly my condition was deteriorating; how it was taking over my life and that I may start to lose my independence…
By Easter, I couldn’t return to Uni, was able to walk only a few metres and my legs were literally buckling underneath me. Two months later I was using a zimmerframe to hobble indoors and by my 19th birthday I celebrated it in a wheelchair. How my life had changed in the last year!
For two years I was very ill, pretty much bed-ridden with fatigue and pain; would cry every morning unable to feed myself in the mornings as my arms were too stiff and painful to lift to my mouth, and my rib muscles even hurt to breathe. Despite having a good appetite I genuinely looked anorexic. The disease was burning up any calories that I ate and I had severe muscle wastage. A friend remembers me lying in bed one evening (as always when people came to visit me) and she had to feed me cashew nuts as I was unable to do it myself. This seems like a different world to me now, and almost unbelievable. It’s amazing how your own mind shuts it out to protect you.
I sought the help of any alternative treatment going! Well, I wasn’t so naïve as to start rubbing a Tiger Penis from Dr Herbs on my forehead or anything random like that but we came across many different approaches from hypo-baric oxygen chambers, amalgam filling removal, to taking my blood, oxygenating it and then putting it back into my veins through a drip. I turned a corner after seeing a specialist in London who put me on a strict nutritional regime and slowly my health began to build up. I regularly have Osteopathy, Acupuncture and Homeopathy. I truly believe that I’m where I am now because I persisted with treatments that worked on my health holistically, rather than just bombarding my body with drugs to alleviate the symptoms at the time. I started right at the beginning and have hopefully built a strong foundation for the bricks of health to stand on, to give me the best chance of living with this condition. Yes, my mobility is extremely compromised (I’m a full-time wheelchair user and cannot stand at all due to my legs being in a fixed bent position) but on the whole I feel quite healthy and the R.A is well under control.
So that was the bad stuff and now for the positives – which I think is so important to keep you going. We are all a product of our thoughts and when we’re being negative, we feel negative. I have always tried to stay positive despite people thinking I wasn’t always being realistic about my situation, but that’s what I needed for myself at the time. It is now ten years on that I am dealing with the acceptance of being in a chair. I thought I had, but it appears not! The mental struggle with being in a wheelchair is actually harder to deal with than the physical. When I was so physically unwell, my whole focus and effort was to get through each day and just to ‘get well’. It’s actually when I was feeling a lot stronger that I then felt worse emotionally as I had to contend with the frustrations of being trapped in this wheelchair, unable to do what I wanted.
Sport undoubtedly gives me joy so I have been going to the gym for 5 years now and within that environment have been introduced to other wheelchair sports. I am very fortunate in that I live 5 minutes away from Stoke Mandeville (the birthplace of the Paralympic Games), so my gym/stadium is used for the GB teams of Wheelchair Basketball, Rugby, Shooting, Athletics – the list is endless- and I have dabbled in the Rifle shooting, taking part in the National competition. A highlight is playing table tennis with my personal trainer and good friend Andrew, which is more reminiscent of playing the type of sports I participated in before I became ill. I do this just for fun but whether or not I take it further, I will have to see. It’s just great to be able to get a buzz again by being physical and competing. If it wasn’t for living in this area, and the facilities being so available for disabled people I may never have put myself back out there.
It’s the nerves and self image, which is where charities like Enhance the UK are so needed to raise awareness and create a forum for disabled people to find out what, where and how they can go and achieve things again.
As I just mentioned, being in a wheelchair has a massive impact on your self-esteem and body image. But again, it only has the power over you if you let it. The way you perceive yourself is mostly how people will find you, thus affecting the way they treat you. I’ve never had aggressive, derogatory comments aimed at me in 10 years because I don’t expect it and don’t hang my head in shame. If you go around with a chip on your shoulder and snap at people for patronising you or trying to help, well then that reflects on your own issues – it also doesn’t help the rest of us that would welcome help from a stranger to open a door, as they are now put off doing that by someone previously snapping at them. I understand that everyone’s situation is unique to them but what you give out, you get back. That’s the way I see it. ‘Simples‘! That’s all regarding the outer-persona; one’s true self esteem is another matter and I find I struggle much more with the thoughts that I internalise concerning how comfortable I am with myself being in a wheelchair. I am surprised that I have been in a wheelchair for 10 years and battle more with this now than I did in the beginning. Acceptance is a peculiar thing and we all come to it at different speeds. There’s ongoing work to be done on this matter shall we say…and I’m tackling it.
Day to day I’m living pretty normally. Six years ago I got back to driving with the help of the Motability scheme – such freedom! – and I live on my own in a beautiful bungalow with the support of a live-in carer. There are some seriously weird and funny tales with regard to them…but that’s another story entirely! Friends have been a huge support to me, and when something like this happens to you, as the cliché says – you tell who your real friends are. I’ve got some real diamonds. I also come from an extremely close family, who I confide in more than anyone and we have such a laugh together too. I cannot value them highly enough and I owe so much to them.
Volunteering is a step I’ve taken in order to boost confidence and gain some experience, so I help an organisation called WheelPower who help disabled people get into sport, from beginner level to playing for Great Britain. I also work on reception at a care home. Right now I’d love to experience lots of new things like TV work – I’ve already done some editing and I’d like to dabble in being an extra – and I will be trying out new sports like sailing. I’ve got a good feeling about what’s round the corner… I needn’t hold myself back anymore.
Everything happens for me at the right time – when I am ready for it. There are people coming into my life right now that are going to help me with the next stage of my life, showing me opportunities that exemplify that I CAN live a full, successful life…even if it’s not on the train I originally hopped on and was enjoying!