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

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.

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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!

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!

CRPS Awareness Month

Lots of things have been happening recently with November being CRPS awareness month. I have been in a few local papers raising  awareness of CRPS (see links on the right).   On November 7th (CRPS day) I got to meet some senior councillors at Islington Town Hall, teach them all about CRPS  and have an orange themed photo. It was great to raise awareness of CRPS in the local community and also to have them support my CRPS awareness work. 

On November 12th I went to a soup lunch held at the Halfway House Kineton (Gloucestershire), raising money for CRPS UK. It was a great event with many members of the village supporting the event. Tania (Landlady) had made three different soups with £2 from each soup going to CRPS UK, I can assure you that they were all delicious (I had one not all of them!). It was lovely to have one of the co-founders of CRPS UK and also two members of the support group there too. It was a lovely afternoon and we raised £260 for  CRPS UK in the process.


For the last month or so I have been raising money for CRPS UK and my 5Km wheelchair challenge, thank you to everyone who has donated so far I have raised over £1000, which be a massive help for the charity. If you haven't donated but want to click  here. 

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As it is CRPS awareness month, here are ten facts about CRPS:

1. CRPS is the most painful condition known to medicine.
2. Many cases of CRPS go misdiagnosed.
3. A study claimed that 1 in 3800 people in the UK develop CRPS.
4. The cause of CRPS is unknown although it is usually triggered by an injury or  surgery.
5. There can be complications of CRPS such as ulceration which can lead to further complications and infection.
6. There is no cure for CRPS 
7. There are no specific medications for CRPS.
8. Treatments include spinal blocks/epidurals, spinal cord stimulators, ketamine/lidocaine infusions.
9. Most doctors have not heard of CRPS let alone know how to treat it.
10. In the past CRPS was thought to be psychosomatic but research has proved this to be wrong.

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. 

Eleven

Since being diagnosed with suspected chronic pain and eventually a diagnosis of Complex Regional Pain Syndrome I have had eleven procedures, including two minor ones which I had just before the diagnosis of CRPS. Only one worked and that was only the beginning, if only I had known what was coming so I could prepare myself for it. 

Since February 2015 I have had nine day case procedures, five of which I have had in 2016. Thats nine trips to radiology theatre, nine sets of sedations and numerous injections plus infusions. Yet only one, the first one in February 2015 could be considered successful as it gave me relief from the pain for a week.  The following eight have made it worse and believe me there are different degrees of worse. 

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Procedure Number 11.

I went into hospital understandably apprehensive given previous experiences, but I went through the normal processes  signing in and being admitted to the ward, meeting my nurse making sure everything was in order. Finally my consultant came round and we discussed the procedure I was  having and what the risks were, I signed the consent form and that was that. I lay on my hospital bed watching television wishing time away as I was extremely hungry as I was not allowed to eat. Eventually the porter came to take me to radiology theatre, final checks were made and I don't remember much else. Apparently the procedure itself went well, but I came round in agony, I was hunched over a pillow crying saying my leg and back hurt (both affected by CRPS). Of course I was given lots of strong pain killers but they barely touched the pain, I spent the night in hospital and spent the whole of Tuesday in what felt  like more pain than the day before, I was being given as much pain relief as they could give me. I had an MRI scan of my spine, which was horrendous as I was forced to lie down which was agony. There was no changes from my previous scans and the decision was made to discharge me, with the pain killers which they were giving me on the ward.  I lie (well halfway between lying and sitting) in bed writing this post in the same amount of pain and on the same medications.

But why?

The question I get asked most is why? Why do you put yourself through eleven procedures? When the success rate is so low? Well when you suffer from chronic pain, from the most painful condition  recognised by medicine, you will put yourself through a lot in order to try and gain remission or, to lower your pain so you can have a better quality of life.  If  there is an an avenue open to me that might lower my pain levels that seems appropriate then I why not take it? If I don't take it I would never know if it would have worked or not, it may be a significant opportunity missed. With regards to success rates, there are no high success rates with procedures and treatments for CRPS. Just one of the very annoying characteristics of CRPS is that everyone reacts differently to treatments and procedures, therefore the medical professionals cannot give you a reassuring success rate, you have to weigh up the pros and cons and take the risk. 

I took that risk eleven times, and unfortunately for me only one worked.  I don't regret taking those risks, even if I am paying the consequences of a few of them. They were opportunities to start to take my life back from CRPS and I think most people would do the same if they were in this position. However I still have an opportunity to take my life back and that will be as a wheelchair user, I will be able to do almost all the things I did before CRPS and also a lot of new opportunities will arise.  However I digress, one of the reasons I had to go through eleven procedures and have CRPS change my life completely is because there is not enough knowledge amongst medical professionals, or research going into  CRPS and how to treat it. I hope no one else would ever have to go through the pain of having Complex Regional Pain Syndrome, let alone eleven procedures.  It is only by writing posts like this that we are likely to get awareness and ultimately more research, better treatments and possibly a cure.