The Troubles of Being Young and Disabled

I've been trying to think what I should write about next, that's when Dan had a good idea. What it is like to be young and have a disability. Since my CRPS got worse and I started to develop ulcers, my mobility has also got worse, meaning I am unable to put pressure through my right leg which has been the case for the last 6 months. At first it was hard to try and adapt, and it still is but I feel like I'm getting there, my balance is incredible now. I consider myself lucky, I had saved some money and I managed to buy an automatic car which my parents paid to have adapted for me. I don't know where I would be without my car (Ralph) now, after 3 months of not being able to drive my old car, it gave me some freedom back. All of my friends and family were really supportive in me trying to live with my disability and accepting my limitations, however, society can be very cruel to young disabled people. Don't get me wrong some of the general public are very nice but others can be very rude and spiteful for no obvious reason. So I thought I'd share some of my mine and Dan's experiences to make you realise you are not alone:

1. Disabled bays: 

There's a clue I the name really they are for disabled people who hold a blue badge irrespective of their age. I know for sure I have had some terrible experiences of disabled bays within the last 6 months so I'm sure many other people have as well.

I was going to the supermarket one day and so I went to park in the disabled bays because I have a blue badge. Before I even started to get out of my car an old man was stood there shaking his fist at me. Normally I use my chair when I go into the supermarket but this time I only needed a couple of things so I used my crutches. I started to get out of the car and the man starts shouting about 'how I should move my car because these spaces are only for disabled people.' I ignored him at the time until he said 'look at you' and that I was faking my disability, I turned round and said 'so then why are you parked here, you are old not disabled.' After that I heard him mumbling but I ignored it and just went to get my shopping. I was innocent, all I wanted to do was go to the supermarket. Later on when I thought about it, it made me really frustrated because I just wanted to mind my own business.

When I've parked in disabled bays and got out, I have been 'reminded' several times that I'm parked there. Dan has even had people knock on the window saying 'excuse me this is a disabled space'.  This is pretty common for CRPS sufferers, as primarily it is an invisible disability however right now mine is pretty visible, in fact it's bright pink and people still feel the need to intervene. 

2. 'How can you drive that car?' 

This is a question I hear far too much of. My car is adapted with a left foot accelerator so I can drive it with my left foot, which was hard to adapt to at first but now I couldn't imagine it any other way. Dan's car is adapted with hand controls, so he can accelerate and brake using his hands. It's pretty amazing the kinds of adaptations that you can have put in your car, yet unless it affects you and you are able bodied you've probably never thought about it. 

Not that long ago, I went to put petrol in my car and then went into the kiosk to pay. My leg was in plaster and I was on my crutches and the woman behind the till started asking questions. 'Is that your car' 'are you the driver' 'you're not allowed to drive like that'. I said yes and it is adapted so I can drive it with my left leg. 'Surely that's not legal'. Actually it is perfectly legal. The woman even threatened to report me to the DVLA, if she saw me again. It's so frustrating and tiring having to explain yourself everywhere you go when you just want to get on with your day. 

But just because you have disability doesn't mean you can't drive, there are so many adaptions you can get nearly anyone driving. 

3. Wheelchairs

When Dan and I go out it always takes us a while to get our chairs out the car and to put them back in. I find it frustrating that it takes so long but then we just have to be patient and so do other people. We've had people just staring at us putting our stuff in the car, for no reason just because they are nosey.

The most frustrating thing for us is when we go out in our racing chairs and parents with young children say 'look at that bike' and the little kids correct them saying its a wheelchair. It's like they are afraid to tell them it is a chair. Personally, I'd rather them say it's a wheelchair than send mixed messages to children because there is a difference and being honest doesn't offend us, we are well aware they are wheelchairs and not bikes. 

When the weather in nice Dan and I go training around the quay, we have so many people of all ages just sit and stare at us, we are trying to better ourselves and we get people pointing and staring. I think this is because para sports are massively under-advertised and its probably the first time many people have seen racing chairs or hand bikes but even so it makes me feel like I'm the odd one out when really I'm not everyone is different. 

Over the last 6 months I have had so many negative experiences like these by members of the public. We don't want wrapping in bubble wrap either, we just want to be able to get on with our own lives like any other person would. Obviously these are just the bad experiences, I have had positive experiences as well when people offer to help if they see I am struggling. I wanted to share these stories so young disabled people don't feel isolated and alone like it is just them, it isn't, lots of people have these kind of problems.

Stay strong! :) 

Isn't it funny how things change.

If I had imagined my future when I was 16 years old, I definitely would not have imagined I would be in the position I am now as a 19 year old. Back then I would've imagined myself living in London and working at all the type of amazing places I did. I had big dreams, the only career I'd ever wanted to do was to be a chef. For a few years I managed to hide my pain under a mask in front of people. To me it didn't matter that much because I was still doing what I had always wanted to do and that. Is the thing that kept me going. I miss it terribly. I wish I was still there with all my friends. But then in August 2014 a small black dot appeared on my right, CRPS affected limb. At first I thought nothing of it but then it was the thing that changed everything. After only a few days, the black dot started to collapse in on itself. It turned into a small hole, which then grew deeper and wider. I was unable to go  to work, I still lived in London but the thing that made me want to carry on had gone. I was really upset to say the least. From October - December I spent my time in hospital having skin grafts and reconstruction on my foot, it was a horrible and terrifying time. But finally on the 18th Decmeber I was discharged from hospital, my foot was healing and I was able to go home for Xmas. Everybody had doubts about me returning to college including me but I was determined and nothing would stop me, even though the term started only three weeks after I had re-learned to walk and left hospital. I was so happy to be back at college with all my friends, I felt like I had made it and the worse was over, things just kept getting better and better. Then only a few weeks before half term, another dot appeared on my foot. At first I tried to ignore it and pretend it wasn't happening, but then the same thing happened and it started to collapse inward again, I could no longer ignore it. I had to try and explain what was happening, even though i wasn't really sure myself. Again, it worsened pretty quickly. I'm so grateful that the college were so understanding and together, along with my doctors we made the decision I should leave after half term and try and get better for the following January.

I left college on the 22nd February, I had to return to my parents house. In all honesty, it really destroyed me, I felt like such a massive failure. Things kept going from bad to worse, on the 6th March my leg was put in a plaster cast to try and stop the twitching ripping the ulcer apart. Now, 37 weeks later I am sitting here with a plaster cast in my leg. But that is the only similarity between now and then. After the cast was put on my depression spiralled almost out of control. I was at the point I just wanted to give up. I was exhausted, emotionally and physically. But luckily for me ther was a way out. Before my CRPS I had done karate for 8 years and I had a 1st dan (black belt). I hadn't taken part in any sport for the last 3 years but during the really dark times, I felt I needed to. I looked at many para-sports. But I wasn't really sure about them, I didn't know anything about it really. I tried fencing but it wasn't for me. Then I found a wheelchair racing group about 50 minutes from where I live. I went along not really knowing what to expect, I saw how fast some people could go. It also happens to be the place I met my boyfriend, Dan. Since then everything has changed for the better.  I am no longer depressed, in fact quite the opposite! I apply the same principles of karate and my ambitions of being a chef to my wheelchair racing. I want to be the best. I love being with Dan, we be on so well and it's amazing we understand each other's problems. Now when I train, it takes my mind off all the rubbish that has gone on it the past three years, it gives me hope for the future. Strangely training is a brilliant way of getting rid of anger or frustration. By far my favourite thing is the post training buzz, when I finish training I feel amazing and so happy!

I guess what I'm trying to say is, just because one thing doesn't work out it doesn't mean that's it. At the time, I really thought it was but Dan has taught me it isn't and that there is more out there than you could ever imagine. Never give up hope.

November is CRPS Awareness Month!

You probably don't know that November is the international awareness month for CRPS. During this month, people are being urged to spread awareness more than ever. Many people wear orange during CRPS month as it is supposed to represent the burning pain felt by many sufferers. This year Dan and I, along with other sufferers took part in a 12 hour static cycle at Bath Univeristy's training village to raise money for CRPS UK. It felt great to be involved in such a big event even though I couldn't stay to the end because my leg started to swell inside the cast and I had to get up at 5am the next morning to go to the hospital in London.

More about CRPS:- 

Complex Regional Pain Syndrome (CRPS, also known as Reflex Sympathetic Dystrophy, RSD) is an uncommon condition first observed during the American civil war, then called Causalgia. CRPS is usually triggered by an injury or surgery but can occur spontaneously. CRPS is characterised by severe pain, swelling, temperature and colour changes and motor dysfunction. CRPS pain continues long after the original injury has healed. 

CRPS is poorly understood and a cause has not yet been found although there are some promising areas of research. It is generally agreed that the body produces a faulty response to an injury where normal inflammatory responses such as pain, swelling and temperature changes do not stop once the damage is repaired. This leads to a ‘feedback loop’ within the nervous system making the body more and more sensitive to pain. It is not known why some people get CRPS and others do not.

CRPS is difficult to treat but pain medications and physiotherapy are used to limit the effects of CRPS, often in conjunction with other therapies and treatments. More research
is needed to develop better medications and treatments for CRPS.

Complex Regional Pain Syndrome (CRPS) is a rare neurological disorder, which causes chronic pain that cannot be controlled and can affect all areas of the body but most commonly occurs in the limbs. It is a debilitating and disabling inflammatory condition that can be caused by minor injury (sprain), broken/fractured bones, surgery or can appear spontaneously without known cause. 

CRPS is believed to be the result of dysfunction in the central or peripheral nervous systems where the signals between the affected limb or body part and the brain are misinterpreted resulting in the following:

• “burning” pain (can be hot or cold feeling)
• hypersensitivity of the skin.
• changes in skin temperature: warmer or cooler compared to the opposite extremity.
• changes in skin colour: often blotchy, purple, pale, or red.
• changes in skin texture: shiny and thin, and sometimes excessively sweaty.
• changes in nail and hair growth patterns.
• swelling and stiffness in affected joints.
• motor disability, with decreased ability to move the affected body part.

CRPS can strike anyone at any age and affects both men and women, but statistics show it is more common in young women than any other category. 

Currently in the UK, there is no funded research into CRPS. This means that we are reliant on America and Australia for breakthroughs in science. CRPS is widely misunderstood in both in everyday and amongst professionals themselves. There is currently no cure for this condition, however we are ever hopeful.

Information from: www.crps-uk.org