From the BBC ‘Ouch’ disability blog, story by Emma Tracey, 18 November 2014.
A woman with ME who runs a charity from bed where she spends all her time, is urging others to complete a list of wishes to mark her 30th birthday.
Aspirational lists of things to achieve are seen and shared regularly on social media. Though 29-year-old Vikki George reads them, she can’t do the action packed things like skydives and round the world trips that they often contain, due to ME (myalgic encephalomyelitis) which gives her chronic fatigue.
The condition means George also experiences a lot of pain and in 2012 it caused three months of complete paralysis. Now she has to spend most of her time in bed, in darkness. She leaves the room for only an hour a week when her parents help her downstairs to lie on the sofa.
This means that for her birthday George is unable to plan the activities her peers might, and she would have a lot of catching up to do first. “I haven’t ticked off any of the teenage things,” she says. “I haven’t even bought my first legal drink or had my first driving lesson.”
Instead, to mark her birthday she has come up with 30 wishes designed to make others’ lives brighter. She is now asking the general public to carry them out.
The wishes include joining the bone marrow register and helping to raise £6,000 to buy a beach wheelchair for her favourite Norfolk holiday spot. They are all things that she would like to achieve if she could. “If I was well enough, I would like to be outdoors, actively fundraising,” she says.
Though she is asking others to carry out good deeds there are positive things she is able to do from her bed which she dedicates a lot of time to.
She co-founded Postpals 11 years ago, a charity that delivers cards and gifts to seriously or terminally ill children and their siblings.
George had the idea after a particularly severe bout of illness. At the time she was receiving cards regularly from AYME, the Association for Young People with ME, and says it was the highlight of her day. “Mum and dad would bring up the post and read it to me,” she says. “Pinning them up on my bedroom wall made me happy.”
She now puts all her spare energy into doing the same for others, and the latest project is sending letters to children from each of Santa’s reindeer.
“One girl in hospital thought that the reindeer had peeked through the ward window,” says George. “Another boy was so relieved because the letter from the reindeer had come to the hospital so Santa definitely knew he was there.”
So far, 15,000 people have watched a YouTube film about Postpals, whose patron is BBC Radio One DJ Fearne Cotton. Wish number two on the list is to get the video viewing figure to 300,000.
The fifth wish was for 12 flowers to be given out to strangers, which George’s local radio station BBC Surrey granted recently. The morning show is featuring one of her wishes each week in the run up to Christmas.
George has been keeping tabs on the progress of her wishes from her blacked out bedroom. She says her room is “a mess, and talks about the brightly coloured “stuff” pinned up everywhere which she can see in dim light. “I often have butterfly things scattered around because they have become my symbol of hope,” she says.
The 30 wishes have been posted on her blog from a tablet computer which she describes as a “lifeline to the world.” When she’s in hospital, she insists on a room with Wi-Fi because the internet is how she maintains contact with her friends, most of whom also have ME.
She is keen to raise awareness of the condition and the 30 Wishes project has allowed her to do so. “You only see people with ME who are doing really well and out and about,” she says, “you don’t see the ones who are behind closed curtains. I’m sure we’ve got neighbours who don’t know I exist.”
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