I'll Beat Fatigue Illness
Sarah Gill was 14 when she was struck down with ME, or chronic fatigue syndrome. It started with migraine and over the following months she suffered four serious viral infections causing sore throats, dizziness, sickness and flu.
Each attack left her weaker. They turned the disco-loving artist and musician into a shadow of her former self - pale, exhausted and a stone underweight.
Her desperate attempts to "get back to normal" and return to school and her beloved flute only worsened her condition.
And by August 1997 Sarah had deteriorated so badly that she bad to spend long periods in bed, too weak to use her limbs and suffering memory lose, poor concentration and slurred speech. Although she was exhausted she was unable to sleep and in constant pain. Her parents, from Galleywood, Essex, were desperate.
But, thanks to a supportive GP, hospital consultant and home tutor, Sarah, now 17, has slowly learned to cope with the illness that has wrecked her life.
And last year she passed her GCSE art exam after being allowed to sit it at home in stages over two weeks. Mum Heather, 47, says: "Sarah is still very ill. Our life with ME has its ups and downs and we face new problems all the time. But over the past three years Sarah has come to terms with her illness and we have become more relaxed about it as a family. Thanks to the help we have received we have a different outlook on life and are positive in that we know we can cope with whatever happens in the future."
Until ME struck, Sarah was an outgoing girl who loved music and art as well as enjoying ice-skating, cycling and country walks. Her GP was as concerned as Sarah's parents at her deteriorating health and referred her to a specialist. Chronic fatigue syndrome was confirmed. But Sara's attempts to return to school only worsened her condition. It didn't take long belore she was missing more lessons than she attended and her ambition to be an interior designer seemed hopless.
"The more Sarah tried to get back to normal the worse she got," says Heather. "Initially her object was to attend school part-time but it became less and less feasible. Life at school was hard as she was no longer able to keep up with her work. It became impossible. If she attended a lesson she was unable to recall the work. Herself- confidence was at an all-time low and we, as parents, felt so inadequate at dealing with this little-heard-of illness."
Her lifeline came through educational consultant Jane Crook, who put her in touch with the Action for ME charity and arranged with the local education authority for her to have a home tutor. Although still frail, Sarah was able to study at home.
"Suddenly we felt we had turned the corner. For the first time we had been given so much hope for the future. The relief we felt was tremendous," says Heather.
But the battle was far from over. "Sarah still has sudden relapses and bad days when she can't move or get out of bed. I had to give up work to care for her as she cannot be left on her own. She is unable to go out except in a wheelchair because she is so weak. Even then she can't be out for long because she gets exhausted. She had to give up her music as her memory problems and the pains in her limbs made it impossible. She didn't even have the energy to hold the flute. Weakness is a major problem and if she stands up for too long she simply collapses. She can't tolerate light or noise. She still spends most days in bed. On a good day she comes downstairs and lies on the sofa and we ye built a bed in the garden so she can be outdoors.
Most of the time she is too exhausted to have visitors or talk on the phone. It is no life for a 17-year-old girl. She would love to go clubbing and see her friends but it's impossible. She has to take one day at a time. It is really a waiting game, hoping that one day Sarah will be back to her old self."
Sarah admits: "I used to fight ME and think I wasn't ill. But over the years I've learned how to manage the illness and now I can live with it."