In March 2016, my hubby and I climbed Mount Kilimanjaro – a 7 day trek to reach the 5895 metre summit of the highest free standing mountain in the world and the tallest mountain in Africa. It was the hardest thing I've ever done, but an amazing achievement and between us we raised over £8000 for our chosen charity.
Now I am taking on another challenge - to umpire the longest ever tennis match, with the help of children and adults at Knaresborough King James' Tennis Club, who will follow in the footsteps of Nicolas Mahut and John Isner but go one step further.....they will rotate each hour whilst playing a continuous tennis match for 12 hours! It's a bit of fun for them and a very long sit-down for me, as I'll be umpiring for the full 12 hours!!!
We are doing this challenge in order to raise money and
in particular awareness of a small independent UK charity very close to our hearts – Invest in ME Research. Every penny we raise will go straight to the charity - we are 100% funding the trip ourselves so every penny we receive through donations really will make a difference to IiME. Why this charity? Well in 2002, my brother, Paul Kayes, was struck down with M.E. (Myalgic Encephalomyelitis) following a virus. He was very fit, active, had a good job, a loving wife and two children, yet this illness showed no mercy as it gripped his body and as a result, for the last 13 years he has become virtually housebound and most of
the time is confined to his bed. His only hope is that a cure for ME is found.
Invest in ME is run on an entirely voluntary basis by sufferers and parents of children suffering from M.E. Every penny they receive goes towards finding the cause and cure for this horrible illness whilst also trying to educate health care organisations and the public. Their most recent push is to raise funds for Biomedical Research into ME and have already laid foundations for a UK Centre of Excellence for ME Research. We want to help them take a step closer to reaching their goal, so that one day soon, a cure can be found to help my brother, and other sufferers, to get their lives back. We also want people to understand more about M.E. so its sufferers don’t feel so misjudged.
So what exactly is M.E.?.....ME is a debilitating illness that affects 250,00 people in the UK (a prevalence higher than HIV or multiple sclerosis) and around 17 million worldwide. 25% of sufferers are severely affected to the point they are effectively house or bed-bound. 10% are children. There is no cure. Even the cause is unknown, as so little research has been funded to date, although it often follows a viral infection. ME is thought to be primarily a neurological disease with symptoms such as extreme physical and mental exhaustion, muscle weakness and paralysis, joint pain, head pain,blurred vision and severe dizziness or blackouts, vertigo, insomnia, respiratory problems, noise and light sensitivities, cognitive impairment, digestive problems and a host of other symptoms.
ME doesn’t prey on the weak, it can hit anyone…..strong men, active women, healthy children….at any time and without warning. It can last anything from a few months to a lifetime. ME kills, yet so little is being done by the medical profession who still do not understand the illness. Sufferers feel misunderstood, misjudged and isolated.
Dr Kilimas, who splits half his clinical time working with patients with HIV and the other half with patients suffering from ME has said “ if I had to choose between the two illnesses, I’d rather have HIV”. Enough said.
BUT DON'T JUST TAKE OUR WORD FOR IT, HERE ARE THE WORDS OF SOME ME SUFFERERS....PLEASE HELP US TO HELP THEM BY DONATING.....THANK YOU XX
“It's like you have been injected with a deadly poison, where every part of your body feels like it's slowly shutting down. I feel trapped inside my own body, often wondering how I can be so ill yet still be alive, and yet the medical profession has no answers.” Hayley Green 27, sufferer for 8 years.
“It's like having the worst flu every second of everyday, like your whole body is made of lead and just being able to get out of bed everyday is an accomplishment for me. I feel so scared for the future because the medical profession don't even acknowledge this illness as real. It is real, very real…. it's a living hell.” Jade Thomson 32, sufferer for 3 years.
“It's like walking a tightrope over hell, trying always to manage a condition about which no one really cares whilst every morsel of your skin burns and every nerve cell writhes and bounces against every other nerve cell and you just hope like crazy you can hold on. After so long I just feel utterly mentally exhausted. My mantra now is ' we need help, not hope'. I've been 'doing' hope for 45 years. That's why people who have their health and can raise funds for
bio-medical research mean so much to every one of us with this condition because they bring that 'help' a step nearer. Their steps lead directly to our steps...” Rosie Cox 52, sufferer for 45 years.
“It can be like being spun fast on a merry-go-round, then being asked to read a paragraph from a book while still nauseous, all done while wearing a lead jacket and divers boots and being hit
with sticks by a karate class while suffering a massive hangover having being awake for 3 days, then being told how well you look and all you need to do is to just pull yourself together. I once had my arm in a sling and got treated far better than I do with my ME, and I did not feel I had to justify why my arm was in a sling. ME is a KILLER, not a joke.” Tony Bradstock 58, sufferer for 44 years.
“I feel so badly let down by the NHS which is wedded to the idea that ME is a psychosocial illness, when 4,000 research papers show there is a physiological basis to ME.” Anonymous.
"ME is like a hundred illnesses in one; it viciously attacks every aspect of your physical body, painfully and unrelentingly, and leaves you merely existing through the motions of living, while being completely denied to ever feel remotely alive. I feel ME is
something so complex and controlling upon the human physique, one cannot even hope to understand unless one has it. And that is something no one with ME would wish upon another person, for it is a hideous death sentence - it takes lives long before it kills." Emma Hodgson 32, sufferer for 21 years, triggered by MMR jab.
“It's like having a constant headache, overwhelming mental and physical fatigue alongside a central nervous system that feels totally overwhelmed. I often tick off the hours just to make it through the day. I feel devastated that there are so many others suffering like me and little is being done to find a cure. Worst of all I am watching my three daughters grow up without being able to properly share their life experiences. My youngest daughter has never seen me well.” Luke Remnant 42, sufferer for 7 years.
THANKS FOR READING MY STORY, PLEASE SPREAD THE TRUTH ABOUT M.E. SO THAT MORE PEOPLE ARE AWARE OF THE DESPERATE POSITION THESE PEOPLE ARE IN, AND TOGETHER WE CAN DO SOMETHING ABOUT IT. AT THE VERY LEAST, THEY SHOULD NOT FEEL SO ALONE xx