CRPS UK Awareness Cycle Challenge
Wishing you you all much love, happiness and good health during the festivities and 2015.
Amanda :-) xxx
Hello all, thank you for taking the time to visit my fundraising page.
I am fundraising for CRPS UK through my Cycling for Complex Regional Pain Syndrome awareness campaign.
CRPS UK is a cause dear to my heart, as my sister and I both have Complex Regional Pain Syndrome (CRPS). The money I raise will be used to help CRPS UK become a registered charity and to improve primary care education about CRPS.
This years challenge:
October 30th - November 3rd 2014
On October 30, I will set off on a four day ride, from my home in Wiltshire to Snowdonia, a distance of approx. 200miles. I will average 70 miles a day in the first two days, and only 30 miles a day on the latter two, to allow for the elevation in Wales. I know, compared to last years ride, this seems like it will be a walk in the park. But unfortunately, due to being very ill for 8 months (non CRPS related), I was forbidden to ride during that time, therefore unable to train. That, coupled with I am now showing symptoms of the spread of CRPS in my cycling leg (the right one), and the effect the cold damp weather has, means this is my maximum achievable goal at the moment.
On November 3rd, I will be met by the Mayor of Bangor, Councillor Jean Forsyth, and here I will complete the challenge by doing Velocity, a mile long zip wire, the longest in Europe. This I know, is going to be the most difficult part of the challenge, due to the position I will be in on the zip wire and the increase in my pain levels. Once I have completed my challenge I will be taking a long break to recover.
During the challenge, I will be supported by my wonderful boyfriend Nick in the backup vehicle. He will drive each day to my lunch time and final destinations, then get on his trike, ride to meet me and we will cycle the remaining miles together. He will also be mechanical support and assist with getting me to the start of and onto the zip wire.
I have chosen these dates to coincide with an initiative by 'Color The World Orange' to make the first Monday in November, a global annual CRPS Awareness Day.
I could not do this challenge without the support and sponsorship of some very generous companies. They are:
Rutland Cycling - donated weatherproof clothing.
DV Camera Hire - donated a Go Pro helmet camera.
Schwalbe, UK donated four Marathon tyres and inner tubes
Sports Massage Bedford - who have assisted me with nutrition.
Zip World - who have given us two tickets to a ride on the Velocity zipwire.
Wiggle - donated clothing.
Signs n Stuff & R Temlett Builders - printed t-shirts.
Redroofs B&B, Tenbury Wells - Thank you Mike and Jane for very kindly giving us accommodation on the first night.
The Royal Oak Hotel, Welshpool - Thank you Sam for very kindly giving us accommodation on the second night.
Heulfre Bed and Breakfast, Corwen Thank you Malcolm and Sheila for very kindly giving us accommodation on the third night.
The Joys of Life, Bethesda, Snowdonia - Thank you Drs. Wendy & Ieuan for kindly giving us accommodation on the last night.
Withy King - who donated a large amount towards the cost of my recumbent trike and continue to support me with printing leaflets and promotional material.
Thank you all from the bottom of my heart. x
Complex Regional Pain Syndrome (CRPS) is a rare neurological disorder, which causes chronic pain that cannot be controlled and can affect all areas of the body but most commonly occurs in the limbs. It is a debilitating and disabling inflammatory condition that can be caused by minor injury (sprain), broken/fractured bones, surgery or can appear spontaneously without known cause. CRPS is believed to be the result of dysfunction in the central or peripheral nervous systems where the signals between the affected limb or body part and the brain are misinterpreted resulting in the following :
-hypersensitivity of the skin
-changes in skin temperature: warmer or -cooler compared to the opposite extremity
-changes in skin colour: often blotchy, purple, pale, or red
-changes in skin texture: shiny and thin, and sometimes excessively sweaty
-changes in nail and hair growth patterns
-swelling and stiffness in affected joints
-motor disability, with decreased ability to move the affected body part
CRPS can strike anyone at any age and affects both men and women, but statistics show it is more common in women.
Very little is known or understood about CRPS and there is no cure.
My left leg is substantially affected by CRPS, which began in 2011 after a number of soft tissue injuries and a rare congenital foot deformity (then undiagnosed). I was diagnosed with CRPS 2012, 18 months from the start of the soft tissue injuries. The lack of timely appropriate treatment, caused my CRPS to worsen. I am currently showing signs of CRPS in my right leg too, CRPS can spread along limbs or jump to other parts of the body. For some people, this means that they experience symptoms over the whole of their body. I currently use crutches for walking short distances and a wheelchair for anything more than a few yards. I also enjoy hiking on an off road mobility scooter and have an assistance dog who helps me out with all sorts of tasks. 10% of all money raised will be donated to Dog A.I.D who are training my dog Dyson to be my support.
I have always been a very active person and when my CRPS became severe, I struggled to do any sort of activity. The loss of independence and being unable to do the things I loved, lead me into a severe depression and I hit rock bottom. I realised I needed help, which I sought from my GP, a councillor and a charity called Charlotte's Tandems 's. Riding a tandem allowed me to be active again and despite the pain, I loved it. I felt free for the first time in a couple of years and this is where the Cycling for Complex Regional Pain initiative started.
Previous cycle challenges and fundraising events
August 4th 2013 - Ride London 100
A 100 mile sportive, a legacy of the 2012 Olympic road race route in London and around the Surrey Countryside. Rode on a tandem.
September 9th - September 29th - Lands End to John O'Groats
I cycled 1140 miles from Lands End to John O'Groats, zig-zagging across the UK, meeting with the press, doctors, researchers, charities and other sufferers of CRPS.
However, disaster struck just under a month away from starting my challenge; I lost one of my front riders on the tandem. Unable to do the challenge without them, I started looking for other options and found a recumbent trike, with a lot of help from generous donators I bought one. This allowed me to not only complete my challenge, but to do it under my own steam with just practical support. The money raised was donated to The Pain Relief Foundation, Charlotte's Tandems and The Royal Wootton Bassett Town Rotary Club (End Polio Now).
December 12th 2013
The Athena Network -Swindon, a local company, held their annual Christmas lunch and fund raising event for CRPS, which raised over £2000. This money was split equally between The Pain Relief Foundation and CRPS Services (adult and child)at the RNHRD, Bath, one of the few CRPS specialist clinics in th UK.
This year, ill health meant that I had to put my awareness and fundraising campaigns on hold but now I am back and more ambitious than ever. It has been hard for me to get back into condition to complete my next challenge but I am condfident I will achieve it.
Thank you for reading.
Please consider donating and helping CRPS UK to reach their target, which will enable them to become a registered charity. It will be the first CRPS specific charity in the UK.
Many thanks in advance and best wishes
Amanda :o) x
Thank you also, to everyone who has donated and contributed to CRPSUK being eligible now, to apply for charity status and for your messages of support and encouragement during my challenge.
I will be keeping my fundraising page open throughout Nervember (chronic pain awareness month) so please continue to share and donate whatever you can afford.
Only three days to go before I set off!! Forecast for Thursday is rain. Joy!! I hope they have got it wrong. xx
Only 9 days until I hit the road. :o) xx
A little update:
Last night, Nick attached my clip and adapted pedals to the trike. The adapted pedal is something I have wanted since having the trike, but such things are not easy to come by and only by chance did we meet someone at a cycle show who makes them. So, as you can imagine, having waited so long, I was very excited about receiving it and it being fitted.
Unfortunately, when I came to try both new pedals I struggled to get my feet in without Nick's help and my left foot (CRPS one) doesn't like the strap across the top of it to help keep it in place. Feeling quite upset and anxious about it. I will be putting it to the test, out on the road later today. Will keep you posted.