When CRPS goes viral...

Hi All,

I thought I would update you all of the things that have been happening over the last few weeks and what I have planned!

It all started in the last week of spring term at university, when I spoke to Gloucestershire Live who write for the local papers in Cheltenham. I spoke to them about my recent experiences of Cheltenham General Hospital and, how I had experienced what many CRPS sufferers experience which is ignorance of the condition and doctors calling it "psychological", despite showing the physical symptoms. This went out on the 22nd of March, link below:

Gloucestershire Live Article

I thought this would be it in terms of media, but how wrong was I!! The following morning I had messages from lots of journalists, news agencies and also BBC Radio Gloucestershire. Once I had sifted through them, I picked the ones I wanted to follow up. I chose to do an interview with Anna King on BBC Radio Gloucestershire. This was pre-recorded on Tuesday 27th of March and released on the 28th. It was an amazing experience as I got to see what radio studios are like and what is like to do a proper radio interview! We talked about CRPS and the ignorance of medical professionals when it comes to the condition, using my recent experiences as an example.  Rebecca from the charity CRPS UK did a live interview after it came out on the 28th to explain more about CRPS.

Following that interview being released I was then contacted by various tv producers and journalists. Two of whom were channel 5's health correspondent for the national news and also by ITV West Country. I didn't really expect them to follow through with it but again I was proved wrong!

On Tuesday 3rd I received an email from channel 5 news asking if they could come and film that day or possibly the next day. Once a few things had been sorted at their end they came to film that day. The process took about 2hrs to complete. They asked me lots of questions about CRPS, my life and also the problems faced when interacting with a medical professional. It was really enjoyable and I was very excited to see the finished article on the news at 5pm that day.

The following day they released the synopsis video onto their Facebook page. I made the CRPS community aware and they got sharing on their social media. I periodically checked on the viewing figures and it kept going up, by the evening it was on 30k views, it went up again to 60k views and the shares eventually hit over 1k and the viewing figures kept going up and are now over 80k.  I am still speechless as the speed in which it went up and how it was received all over the world.  

Channel 5 synopsis report

On the 10th of April, ITV West Country came to university to film.  I was not really sure what to expect after filming with channel 5. However the process was very similar and some of the questions were similar but we also looked at other areas of CRPS. They also did an interview with one of my friends who had been in the ambulances and on various trips to hospital, so we were able to get a friends perspective on some of the treatment I had received and also what it is like to have a friend with CRPS. They are still in the process of interviewing some medical professionals so the report hasn't gone out yet but we hope it will be aired by the end of the month, I will post the link on here when I can.

On the 12th of April I had a meeting with MP Alex Chalk (Cheltenham). Alex has been following my story since he met me at a talk at university. He was very keen to help me with my awareness work and was very encouraging. He invited me to hold an awareness event in Parliament so that I could further my awareness and make more MPs aware of what CRPS is, how they could help constituents with the condition and also hopefully talk to those who can influence policies that may effect CRPS sufferers. We are hopeful that this event will happen in June or July. I am honoured that Alex has given me this opportunity and very thankful to have his support.

So that is a quick journey through my life in the last few weeks. Its been absolutely amazing and I'm still running on adrenaline! I am waiting for my CRPS to seriously flare up now in retaliation!! Lots of people have been asking so what next? Well here is what I can reveal,

In the next few weeks I have got a few more leads to follow up in terms of media, hopefully we will have the release of the ITV news report.  On the 27th April I have the first meeting of the society I set up with two friends, its called the Disability Welfare Society and is the first disability support society to be set up at the university. The primary aims of the society are to provide a place where students can come together to share experiences and support each other. But also for people to come together and raise awareness of their chosen conditions. Very exciting!!

I will keep you all informed when I can, thank you for all the support!

Helena

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.