Sport & CRPS - A Recipe for Disaster?

Sport and CRPS could easily be a recipe for disaster but if you find the right sport it can be the complete opposite!

Finding the right sport is a long and difficult process. The main problem I came across when finding a sport is CRPS is not recognised.  CRPS does not qualify under the Paralympic classification rules, so finding a club that is able to meet your needs can be quite difficult. However if you do your research and send a few emails, eventually you should be able to find a sport that is near you that you can try.

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In September  last year I started researching different sports recommended by other CRPS sufferers,  these included, rowing, swimming, archery and wheelchair racing.  I was keen to try rowing as this was a close as I was going to get to my old sport of kayaking. After a few emails I got myself a disability rowing taster session at the Royal Docks near City Airport. This was very exciting for me as it was a chance to get on the water which I had enjoyed so much when kayaking. The taster session which was on land in the tank (a swimming pool with a fixed rowing boat)  went so well I went back for another one where I was able to go out in a boat on the water. By the end of this I had fallen in love with rowing! The following session I was introduced to the Royal Dolphins a small disability rowing group at the Royal Docks, this was perfect for me and since November last year I have been rowing weekly with the group. Not only does this mean I'm back out on the water I also now have a great group of friends. I'm still in pain and it still causes my pain to spike even after doing it nine months with adaptions.  I struggle to row for more than 5minutes in certain boats.  However I have found a boat called the Cutter where I don't have to use my legs at all which is perfect for me.

On the 9th of September I will be taking part in  The Great River Race  with the Royal Dolphins. This is a 21.6 mile race down the Thames from London Docklands to Ham in Surrey. We will be completing the race as a six man crew in the Cutter ( the boat where I don't have to use my legs). This is a great challenge for myself as I have only spent an hour at most in the Cutter and this race takes over 3 hours to complete! However I want to prove that being in chronic pain does not mean you can't do something.

One thing I have been working on is desensitising my leg to water. When my leg was at its worse last year I couldn't tolerate anything touching it. In January I started the process of desensitisation to touch, allowing me to have certain things touch my leg without causing too much pain. With a lot of hard work I managed to desensitise my leg enough to allow me to go swimming.  So in the last week I have started swimming twice a week, this is perfect for me as it is non weight baring. This means I can use and strengthen my leg without causing too much pain, unlike walking.  After not being able to swim for 4 years because of my leg, I was extremely happy to be back in the pool. What made it even better still is that I could get from A to  B in less pain than if I was going to walk the same distance.

I'm still in pain and have days where I cannot walk at all, but I have found two sports that I can do on a weekly basis. This has had a really positive impact on my life both physically and mentally. Physically sport has complimented the work I do with my physio and helped strengthen and desensitise my leg, meaning I can do that bit more on a daily basis.  Mentally I am a lot happier in myself and I have something to look forward to three times a week.

I hope this proves that CRPS and sport is not necessarily a recipe for disaster and that if you are a CRPS suffer reading this that you will give sport a chance!

Learning to Live with a Disability

In February this year my life changed dramatically, I walked into hospital and didn't walk out again. I haven't walked since. I have gone from being an independent young woman, enjoying university despite suffering from CRPS, to being completely dependent on my family to do the most simplest of tasks. So here we go here are some challenges I have had to face, whilst learning to live with a disability!

The first challenge I have had to to face most recently is not being able to walk. A skill that until it was taken away from me I took for granted.  Not being able to walk is one of the hardest challenges I have faced, I am now reliant on my wheelchair or  crutches. When I go out I feel like everyone is looking at me, I feel different.   I know it is probably out of curiosity as to why I am in a wheelchair, but the negative thoughts still go through my head and can be quite upsetting. Walking is what enabled me to go out by myself and see friends or go out for coffee, now I can't do that. Most streets and shops are not wheelchair friendly, unless I have someone pushing me I cannot get to them, let alone go in the shop. This really annoys me, why does it have to be so hard for a disabled person to do the most basic of tasks, why can't they make pavements smoother? lower curbs sufficiently? make all shops accessible? 

This leads into the second  challenge, loosing a lot of my independence. Having just completed my first semester at university, I had become used to having independence and the ability to do things when I wanted.  Now I am reliant on my parents and friends to do the most simplest of tasks for me. I can't just go out the house on my own,  most of the I cannot go up or down stairs on my own. Meaning I am stuck in my room or the living room which at times can be quite isolating especially if I'm the only one in the house.  Not only that, despite being told its not a problem, it can feel like I'm being a burden on who ever has to help me.  

There are two challenges I have had to face, not just in the last couple of months but ever since I was diagnosed with CRPS (Complex Regional Pain Syndrome). The first is adapting to having to take medications every day just to get through the day.  I wouldn't choose to take these medications as a lot of them have horrible side effects both short and long term, but the fact of the matter is if I didn't take them I probably wouldn't be able to get out of bed.  A lot of the medications I have to take are either not normally associated with pain but with depression or epilepsy, before you ask why, this is because CRPS is a neurological condition which causes chronic pain.  Or I get  a look of shock when the person realises the strength of the painkillers. Despite taking these medications I still end up in pain and sometimes don't want to but I have no choice, it could be a lot worse if I didn't.

The second is probably the biggest and hardest challenge that I have had to deal with, that is acceptance. Acceptance that I have CRPS, that there is no cure and that I am going to have to give up playing sport and deal with this condition for a long time. Accepting that I have a chronic pain condition has been extremely difficult as  I don't want to admit it. But in order to deal with it acceptance is key because fighting it against it could only make it worse. Only by accepting the condition and the situations it puts me in am  I able to learn to over come them. So in the last year by accepting that I have to live with it or along side it allows me to put on a smile and look (even when I'm not feeling very) calm most of the time. 


The four challenges mentioned are just a few of the many challenges, both large and small that I have had to face both before and after diagnosis. But I hope just by mentioning a few of them, you start to get an idea as to what its like to learn to live with a disability.

One Month On...

One month ago, I walked into hospital to have a ketamine infusion to try and lower my base pain levels down as my CRPS kept flaring up. The intention was that I would walk out of hospital with lower base pain levels and return to university the next day. Unfortunately at some point during the procedure my brain decided that my leg needed protecting and turned my leg off, leaving me with no function and in more pain than I was in before. So instead I came out of hospital on crutches.

The following morning my consultant organised an emergency appointment with a lead neurologist to check that nothing else was going on except for my CRPS. The neurologist reassured me that nothing obvious was going on, except that my CRPS had deteriorated post the infusion and that my leg would come back to life at some point. I then went through a couple of weeks being on very strong pain killers and still in a lot of pain. I didn't think it  could get much worse, but then it did, my CRPS spread all the way down my leg to my foot, it felt like I had severe sun burn all the way down my leg, along with a twisted ankle and stabbing pain in my knee, it was constant with pain spikes.

Throughout the weeks that followed, I spent a lot of time at physio and at the doctors with all of them trying to find a way forward for me. I knew there was a long road ahead, which would be full of ups and downs and I would have to put in all my energy into staying positive and give myself the best possible chance of a recovery.  

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One month on yes I'm still on crutches, still have little function in my leg and still in pain. But the fact of the matter is, I got through a month of it, which I didn't think I could at the time.  Yes there were days in the last month where I wanted to give up but somehow I carried on going. Despite all of the difficult, negative things I have had to deal with there are some positives. The biggest positive is that it has proven that I am stronger than I think I was and, that I can get through the harder times. Yes I would rather be at university, but by taking the time to get my condition under control I will be able to enjoy university more when I go back.

There will be more times in the future where its hard to cope and feel like I can't deal with it any longer. But even though I cannot jump the hurdle at the time, does not mean I will not in the future. 

I hope this has given a little insight into some of the battles faced by living with CRPS. But importantly just remember this:

"you're braver than you believe, you are stronger than you seem and smarter than you think." (Winnie the Pooh)