An insight in what it is like to live as a young person with a chronic pain condition that has no cure. Follow my journey with Complex Regional Pain Syndrome by reading the posts below.

About Me

My photo
I suffer from a debilitating chronic pain condition called Complex Regional Pain Syndrome. Facebook: @LivingWithCRPS

Introduction

About

Complex Regional Pain Syndrome (CRPS)  is a chronic pain condition characterised by pain that is greater and lasts a lot longer than would ...

Thursday 14 September 2017

Anything is Possible with CRPS - Great River Race

On the 9th of September, 330 crews descended on the River Thames for the Great River Race. The Great River Race is a 21.6mile marathon from Millwall Dock to Ham in Surrey.

One of those crews was the Royal Dolphins from the Royal Docks and coached by London Youth Rowing. 
The Royal dolphins are a very small disability rowing group made up of six people...



I am part of the Royal Dolphins  and I have been rowing with them for nearly a year.  Throughout this year I have been training to take part in the Great River Race.

We started at Greenwich  pier where our boat (called a Cutter) was docked.  The river was very rough and we were towed by our safety boat to near Millwall Dock, this is where we started our journey, passing a large ship which marked the start line. The bridge count began, there was 29 bridges between us and the finish.

The first big landmark was Tower Bridge and it was amazing to go under such a historic bridge. This was also the first time we saw and heard the crowds of people who had come to watch.  We rowed at a steady pace and soon enough we were going past the Houses of Parliament and Big Ben. Everyone was having a wonderful time and the water had started to calm which made rowing slightly easier.

Battersea Bridge marked the halfway mark and by this point my CRPS leg was starting to complain. I kept moving my leg trying to get comfortable. I was determined that this was not going to stop me, there was no way I was letting my crew down.  Knowing we were halfway the  adrenaline started pumping through my body and I had a burst of energy.

This burst of energy  got me all the way to Chiswick Bridge, we had been rained on and we were now starting to tire. My CRPS leg was going all kinds of colours, my foot was swelling slightly and my lower back was killing. We kept up the steady pace as we needed to get as close to Ham as we could before the tide changed.

Unfortunately the tide changed a few miles from the finish, the water all of a sudden felt heavy and we we were having to row harder to keep the boat moving. By this point the surroundings were very rural and there were not many people around.

There was a sigh of relief when we eventually went under Richmond Bridge, the last Bridge! We all came together and rowed the best we have ever done, over-taking several crews who had gone  out too fast. We could hear the tannoy at the finish party and the gun went, we had finished!

I was overcome with emotion and I ended up in tears. I was so happy, proud and shocked that I had managed to do it.

****

This time last year I as basically bed bound and in a wheelchair. In a year I had turned it around and taken control of my CRPS. I've learnt that CRPS doesn't mean can't do something. You can, all you need to do is adapt, as a crew we all had to adapt to row the 21.6 miles. I'm determined that CRPS will not stop me and I will constantly adapt to make sure things happen. I hope this proves to anyone with CRPS, you can do it!

Tuesday 18 July 2017

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.

***

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!