Oh my goodness, what have I done? I think that I experienced a brain storm this week – well an even greater one than usual!
Two years ago I had only recently started this blog and was recovering from spinal cord stimulator surgery when I wrote about some inspiring young people in the UK undertaking The Rickshaw Challenge. This is a project that has run for several years now and is championed by the BBC One Show – and particularly by presenter Matt Baker – in order to raise money for the UK charity Children in Need, founded by the late Sir Terry Wogan. A group of young people who will each have a story, from illness to bereavement to overcoming adversity, and have all in some way benefited from the charity, cycle a route across the UK on the rickshaw as a team and fund raise along the route.
The strength of mind and spirit to succeed always shines from these youngsters every year. I was caught off guard last week by a young lady called Sabah who is a member of this year’s 6 strong team. She has had multiple health problems, including cancer, a kidney transplant and now is on dialysis – but she told the audience in a most matter of fact way that she would simply do her stint pedaling the rickshaw and then stop for dialysis. I was a wreck by this point. But the determination of these young people, and Matt Baker who cycles the whole route with them giving encouragement and support, has really got me thinking.
My own health has deteriorated over the last 2 years, and there is always an issue with chronic illness and the deconditioning of the body. For us bendy people with Ehlers Danlos Syndrome it is really important to keep moving and as physically strong as possible – most of us will have exercises from physiotherapists and doctors. But chronic health can become a vicious cycle (no pun intended) as the body becomes deconditioned due to pain, fatigue etc and then the deconditioning reduces the ability to “move” or exercise, in turn leading to further deconditioning. Add a spot of dysautonomia into the mix – check out what it is here – in my case dizziness, low blood pressure, raised pulse, fainting (POTS) and you have a recipe for an increasing number of sofa days and Netflix!
So what is a middle aged (eek) girl to do in order to keep the mind and body working? Well, blogging and writing and generally being part of this fantastic online community does wonders for the mind alongside being a school governor and now chairing an alumni committee. The body isn’t so easy, especially on high pain and flare days. The spinal cord stimulator still helps to mask the leg and back pain from nerve root damage, but then for the EDS pain throw in some pregabalin, naproxen, cocodamol and the odd shot of oxynorm and the result may be manageable. The changes in weather don’t help and I am still certain that my titanium spine reacts to changes in air pressure!
But as the young Team Rickshaw show us, there is always someone worse off and always someone to inspire and motivate us. Sometimes it is important to set oneself a challenge in order to move from one day to the next when life is throwing rubbish about. I am still learning that those challenges need to be smaller these days than a decade ago – pacing….no, I don’t really do that very well.
So back to my first question…what have I done? Well I have set myself a challenge and signed up for the Virtual Rickshaw challenge…..I will be riding on an exercise bike from the comfort of my living room between now and New Year. I’m not going to pretend that I will be burning up the miles and covering anywhere near the real rickshaw ride, or that I will even manage to pedal every day. But if those youngsters can overcome adversity and put themselves out there, then this old bird can surely help herself ….and if I can raise a little money for Children in Need, then all the better!!
If you would like to visit my challenge page please find it here…..no expectation to donate, but it would be lovely to receive some encouragement and support over the next couple of months…maybe you could even share for me. I will give you updates of my progress…..so with today as day one I managed 3 miles with only a neck vertebra and shoulder dislocated. Not bad going for me!! (Don’t worry folks, I am ok – good excuse to avoid the washing up!) Onward and upwards…