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'I found that there was very little in terms of support'
Friday 15 June 2012
Life has been a constant battle for mother of two Shara McDonald. Some mornings she is so exhausted she can hardly move from bed. The 35-year-old has been diagnosed with ME – myalgic encephalomyelitis. It is also known as chronic fatigue syndrome and post-viral fatigue syndrome.
Shara, from Wigston, said: "For the past three or four years I haven't been able to do very much at all.
"There are times when I am in so much pain it hurts to even clean my teeth or brush my hair.
"It is all so different from the days when I used to go jogging and played a lot of badminton."
The first time she had an inkling that something was wrong was six years ago, when she began getting pains in her arms and her legs.
Gradually, a succession of appointments with her GP began and a series of tests were carried out to try to pinpoint the problem.
Eventually, in 2009, ME was diagnosed.
Shara said: "It was a hugely emotional time. In some sense, I felt happy that something had been diagnosed but then I had to come to terms with the condition.
"I was very lucky because the GP I saw knew something about ME.
"I don't think that is the case for many people.
"I also found there was very little in terms of support."
"There is still a lot of ignorance and prejudice about ME. I don't feel there is much understanding or support for what is a really complicated illness.
"It is hard to imagine the fatigue you feel.
"It is not just tiredness, it is exhaustion which, even if you get a night's sleep, doesn't go away.
"There can also be a great deal of pain, which can be a migraine, or pain in your arms and legs.
"Not only are you trying to deal with all that there is a huge feeling of isolation."
Shara has managed to keep her part-time job as a personal assistant at Leicester Royal Infirmary.
However, it often means she has to spend weekends recovering because she becomes so exhausted.
This in turn puts pressure on partner John McDonagh and their sons Connor, 16, and Shane, 13.
Shara said: "They are really supportive but it is easy to feel like a failure because you aren't doing things with your family that you would like to.
"I think they sometimes feel a bit robbed because I can't do much.
"I have to live day by day and try to pace myself as you can't predict how things are going to be."
Shara runs a support group for ME sufferers which has regular meetings and events.
However, what Shara and her fellow sufferers would really like is more research into the condition and the development of treatments.
She said: "I would like to see a centre of excellence established for research into ME."
Shara McDonald runs a group called Leicester Support for ME. E-mail: firstname.lastname@example.org.
ME Positive, an East Midlands support group, can be contacted by e-mailing:
The above, with comments, originally appeared here.
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