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!

Invisible Illness

'But You Don't Look Sick...'

'Don't Judge a Person by its Cover'

When I am out and about in public I may not appear to be in pain that doesn't mean I am not in pain. I don't show I'm in pain because I want to live my life just as any able bodied person would. If I was to show the amount of pain I was in all the time then  I would be a very negative person. When I'm out and about I don't always use my wheelchair, I use my crutches, the same type of crutches that you would be given for a broken leg, it doesn't mean I am not living with a permanent disability.   

People have a tendency to make a judgement about a person. When you see a person getting out of a car in the disabled bay for example, but they don't look particularly disabled. You ask the question to yourself "How is that person disabled?  Should they be parking there?"  You may decide that person is not disabled enough and you form a prejudice against him/her.  Imagine that person suffers from chronic pain and can't walk very far, they may be walking unaided but that doesn't mean they aren't in constant pain. Maybe they need that blue badge to enable them to do their shopping or get to their doctors appointments. 


There is very much a love hate relationship with having a invisible disability.  There are positives which include  giving you a chance to blend in with the rest and being selective as to who I share the details of my disability with.  However this can make it harder to accept I'm not physically  who I used to be, I see the same person that you used to kayak and play sports. 

One of the biggest problems presented by having an invisible disability is getting the treatment you need and deserve. My CRPS symptoms, especially early on were not always visible and I couldn't ensure that they would appear when I went to a doctors appointment. This can lead to a feeling of am I being believed?,Or even thinking that the doctor thinks you are a hypochondriac.


One of the less talked about areas of invisible disabilities is side effects. When you have a chronic pain condition you take multiple medications to try and dampen down the symptoms. These medications can often feel like they are doing more harm than good.  I might be a out in my wheelchair but my medications might be making me feel nauseous and knackered. Yet if I was to stop every time that I was suffering from side effects, I would just be existing rather than living. That wouldn't be conducive to a very positive experience and therefore you have to fight and not let those side effects get you all the time.

So thank you for all being so supportive, both through this blog and my Facebook page (@LivingWithCRPS1). But next time someone opens up about their disability, listen and acknowledge what they are saying, don't question it and think about what you might not be able to see.  Most importantly acknowledge the positives you can't see, the strength and resilience, determination and hope that person has. Even if you struggle to comprehend what that person is going through a little encouragement goes a long way to keeping that person going.

"A journey of a thousand miles begins with a single step" (Lao Tzu)

Earlier in the summer I traveled to Kenya on crutches, to volunteer at a school that serves the local Maasai community.  In a matter of hours I went from not going out the house on my own to on a plane going to Africa on my own.  I was extremely excited at what lay ahead, I had been to Kenya on a family holiday four years previously and this trip had been a long time coming.

In the two weeks that followed I had an amazing time, teaching primary age kids anything from CRE (religious studies), maths, English and all about life in Britain. Seeing how much the kids loved being at school and learning, put a massive smile on my face.  

I spent two weeks singing and playing games with the most amazing group of children and teachers, that I almost forgot what I had been through in the months leading up to it. I was doing what you would expect at my age, rather than being different (not that that is a bad thing). I  proved to myself, my family, friends and medical team what I was capable of even with CRPS.  

Seeing the conditions in which many of these children lived in and how many of the children walked for up to two hours each way to school, put into perspective my situation,  I realised how lucky I was to live where I do and,  to have access to services such as hospitals.

I was also able to meet the two children my family sponsor to go to school along with the rest of the sponsored students. This was the highlight  of the trip. Seeing how much it meant to the children to meet their sponsor and also to go to school, made it all real. It was very emotional and I still cannot put it into words. 

Looking back over those two weeks I made such a positive impact on the children at the school and on the ones that we sponsor, it made the hard work I had to done in order to go to Kenya such as physio, all worth while.  All of a sudden going back to university seemed easier and the future a lot brighter, CRPS was not going to stop me doing what I wanted to do.

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What made the trip  possible?

The key to making the trip possible was the special assistance services provided by the airport and airline. I had notified the airline regarding my needs a few days before the flight. When I arrived at the airport their systems hadn't quite worked as they should, and it appeared quite chaotic. However within an hour they had sorted the issue out and had a wheelchair ready to take me to the plane. I was taken through security and through to a lounge, where I waited to be called to be taken to the plane. I had booked the bulkhead seats which provided plenty of leg room, allowing me to stretch my CRPS leg out during the flight, which really helped.  When I arrived in Kenya I was helped from the plane through passport control all the way to being picked up by family friends, it couldn't have been easier. 

On the way home from Kenya it couldn't have been more straightforward in getting to the plane. My only complaint would be when I landed in Heathrow. My flight was one of the first to land early that morning, I was taken in a relay style system in a wheelchair to just before passport control, where I was told it would be a 45 minute wait if I wanted a wheelchair the rest of the way. Given you have to notify the airline a minimum of 48hours beforehand, I thought they would know how many wheelchairs they needed for each flight and when they were coming in. Luckily I was able to use my crutches and a few of us followed a member of staff through the special assistance queue and to where my parents were picking me up.  

This was the first time I had traveled using special assistance and I learnt that you have to be patient but the service works. All the staff who helped me were friendly and knowledgeable and I would recommend the special assistance service. 

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.