I have been dealing with having ME since April 2006. Just before that time, I had a normal life. The previous two years had seen me running the London Marathon for charity, and I had run others previously. I enjoyed badminton, archery and running a girl’s football team for Fulford Football Club in York. This was as well as a great social life and a very busy job. I was also part of one of the local Business Network groups in York, so let’s just say I was enjoying being normal.
Without boring you with all the in between stuff, I am now unable to work and struggle to walk, even with a stick, and use a mobility scooter to help me get out of the house. Whereas I'm frustrated and angry that I can no longer be part of normal society, I’m one of the lucky ones. Many with ME are bed-bound, can only feed through tubes, and have little hope of improvement. There are likely to be around 800 with ME in the York area alone, 200 being severe, meaning house or bed-bound. The details behind the illness I’ve included under the FAQ tab at the top of our website at www.York-ME-Community.org if you would like to know more.
THE YORK ME COMMUNITY
Our group is a focal point for those in the York area, be they sufferers, family or friends, to gain support and friendship, knowing they could interact with like-minded people suffering from the same ailment. A large part of that is feeling lonely, guilty in not being who you once were for your family and friends, and a feeling of desperation that the Government and the medical system give limited support, funds for research, or even belief that this is a real illness. We try to meet on a monthly basis for a cuppa and a natter, and also chat through our Facebook Group.
The website is a a focal point for the latest news on ME Research as well as local stories and items of interest for those housebound who are able to visit. It's also the place where business supporters of The York ME Community are recognised by having a link to their website as a thank you for their support. I emphasis the word Community as these people live next door to you, are your co-workers, your family, your friends. We have already had support from The Press, Minster FM, Valley Radio, YorkMix, The Barbican, The Yorkshire Fatigue Clinic and York Council who have us listed as one of their Family Support Services.
Although I'm no longer able to work, I have short periods where I can concentrate on projects such as fund raising for Invest in ME who are doing such great work. The current project is with the aim of gaining more foot soldiers in the York area by bringing businesses on board by offering to advise their HR Teams about ME and through our Inter Company Fantasy Football League, kindly sponsored by TGA Mobility.
Every penny of the funds raised from the registration fees for the Fantasy Football League will go to Invest in ME, and the hope is to continue to raise funds in other ways too.
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