Helena’s story

An excellent story of achievement from Helena

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A story of courage, perseverance and a ‘can-do’ attitude to life

My name is Helena, I am 20 years old and from London.  I developed CRPS in my right leg as a result of a kayaking accident in 2013.  My CRPS deteriorated very rapidly and suddenly in February 2016 leaving me in a wheelchair.

I missed kayaking a lot and I was bored of being stuck in the house. So I started researching Paralympic sports which is when I came across para or adaptive rowing.  So in September I had a taster session at the Royal Docks, I enjoyed it so much that I was introduced to the Royal Dolphins and London Youth Rowing (LYR). The Royal Dolphins are a very small disability rowing group coached by LYR. Over the coming months my condition slowly started to improve and within a few  of months of starting rowing I was waking unaided although still in pain.

The Royal Dolphins compete in the Great River Race every year and I was quickly asked if I wanted to join the crew for this years race. I was in two minds my head was saying no my heart was saying yes. After deliberating the idea I said yes.

So on the 9th of September I completed the Great River Race. The race is London’s  river marathon and is 21.6miles down the Thames from Millwall Dock to Ham in Surrey.

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. We rowed at a steady pace and soon enough we were going past the Houses of Parliament and Big Ben.

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!

It was the hardest but most amazing thing I have ever done. It has only just sunk in what I achieved. If you are a CRPS sufferer reading this, if you take one thing from it, let it be this, you can do anything with CRPS, you’ve just got to adapt!

You can follow Helena on Twitter here and her blog here.

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Ellen’s CRPS story

IMG_3278My name is Ellen Williams and I have had CRPS for 5 years. My CRPS story began 6 months after I had an arthroscopy on my left knee after a sporting injury. Being told I was suffering from an incurable disorder, which is also invisible to everyone apart from me, was a rather daunting prospect at the age of 15. For the first 2 years I was told that I had a good chance of it disappearing, as I was young and fit enough to “fight” it like it was some sort of infection. 18 months of intensive physiotherapy, on a weekly basis helped to a certain extent but not enough to click my brain back. When the physical physiotherapy stopped working, I began asking questions. My doctor was the one to give me the news I did not want, telling me that now it was unlikely to go for a long time, if ever. As a 17 year old, hoping to go to university, beginning to think of what the future it felt like nothing mattered anymore because I was never going to be able to live the “normal” future I had been planning since I was 10. Needless to say this was the first time I had got very depressed during my battle with CRPS. However this is when I began to see Richmond. He gave me and my family the answers we needed but had never been given before, that yes I may have to live with this disorder for the rest of my life but that does not mean that life cannot be as good as it was always going to be. Learning to manage my disorder has had its difficulties along the way however every bad moment was worth it when I look back at how much I have managed to achieve since the first time I saw Richmond. My family has been there the whole time, through the tears, pain and happier times however I have always wondered about how hard it is for them. I struggle to see my mum unwell so I cannot imagine how she feels having to see me in agony and knowing there is nothing she can do to stop it. The one piece of information I would give to anyone with CRPS is that it is not just the person who suffers, so if you cannot try for yourself, maybe try for the ones who love you. Needless to say I am now 6 months away from finishing my degree and am doing what I love on a daily basis. I am happy. I never thought I would be able to say that 3 years ago and that does not mean I do not have bad days, some worse than others however my daily life is happy and is “normal” for me.

Gillian’s Story

Huge thanks to Gillian for sharing her story here:

MY PAIN STORY – GILLIAN WESTON

I am always a busy person; I play short mat bowls several times a week and have represented my County and England, I run a Junior session for bowls, I love to swim and I am a member of Horsham Rock Choir. I use a computer as the main part of my job of Practice Manager for a charity.

My problems began in 2010 when I slipped on some ice and inadvertently tried to break my fall with my left arm. I had restricted movement and upper arm nerve pain but after some physio my situation improved.

In Dec 2012 I developed pain in both arms after lifting a heavy object at work. I was referred for physio in Jan 2013 when I was diagnosed with tennis elbow in my right arm and shoulder impingement/tennis elbow in the left. After some exercises my right arm improved but I had further physio in the following months for my left arm. During this time the worst aspect was the nerve pain from my elbow to my hand – no painkillers relieved it, and I was in constant pain with or without movement, even scratching my face or lifting a kettle were agony!

In September 2013 when I was still in a lot of pain and had a further condition added – ulnar nerve entrapment – I was given 2 steroid injections. There was an improvement but of course the underlying problems were still there and in January 2014 there was a return of my intense pain. A further course of steroids followed, but the actual injection was excruciatingly painful and I was left with numbness in my ring finger. I was pain free until Nov 2014 when I moved a pot in the garden and experienced a twinge in my elbow, the problem was exacerbated when I used a simple screwdriver in Dec at work and I ended up in the worst pain I had had for some time.

By Jan 2015 I was at the end of my tether and rather than go the NHS route saw a physio who I knew privately. She felt that my neck was also the cause of my problem plus bad posture. Her approach was more holistic and she gave me some acupressure to try and calm me down from my very distressed state. She even suggested counselling as she was concerned about my mental health as a direct result. I was at various times loaned a TENS machine, given ultrasound and massaged. She helped me address by posture and gave discussed calming techniques. She discussed with me how my mental state was affecting my pain but I was sceptical about this at the time and more or less dismissed it. There was a degree of improvement in my condition over the following month thanks to the new physiotherapist but I was still struggling day to day.

During all these periods in and out of pain I have had to stop playing bowls and going swimming, use my right hand more – particularly with the mouse at work, been unable to sleep on my left side, been restricted doing the dance moves at choir, and not been able to do many day to day things that I used to take for granted.

In March 2015 I attended Heathrow Airport with Horsham Rock Choir where Georgie Standage my choir leader and Richmond Stace were hosting an event for UP. I took one of the flyers and did my research via the UP website. I found the videos very interesting – in particular the one explaining how “all pain comes from the brain” (Lorimer Moseley). I took particular interest too in the mindfulness videos. But I also found the written information really useful too. Over the following weeks I used mindfulness apps and also ‘talked’ myself out of pain. When I felt pain I closed my eyes and tried to focus on other parts of my body; if I hit my weakened elbow (as I do frequently!) I told myself that it was fine, it would hurt for a while and then I’d be OK. I used Mindfulness to keep me calm and I found that my nerve pain lessened in the weeks that followed.

By May I was able to resume my bowls for short periods to use my mouse at work left handed, do my Rock Choir moves without pain and return to swimming. Significantly I can sleep for periods on my left side without pain – which I haven’t done for a long time!

It is now July 2015 and I have been pain free for just over 3 months–other than the odd elbow bash! I do get the occasional twinge, and very interestingly if I am stressed about anything I get a bit of nerve pain in my arm! Looking back some of the worst pain ties in with significant stressful times in my life. I am still wary and careful about exacerbating things, but importantly I feel that “yes I do have pain sometimes, but pain doesn’t have me”. I am indebted to UP for giving me my life back, and I continue to use the techniques I have learnt – in particular the Mindfulness Breathing – to keep me calm and in control.