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Sufferer wants more people to realise devastating impact of illness

Monday 28 May 2012

 

From UK publication This Is Wiltshire:

 

Lesley Tapp
Fibromyalgia sufferer Lesley Tapp at home in Trowbridge

Sufferer wants more people to realise devastating impact of illness

12:00pm Friday 11th May 2012

A Hilperton woman has spoken out about her struggle with the ‘invisible illness’ fibromyalgia, in an effort to raise awareness of the disease.

Lesley Tapp has suffered from the disease for 10 years, and has lost friends, her job and her lifestyle as the chronic pain, fatigue and sleep deprivation it causes has progressed.

Tomorrow (Saturday [12 May 2012]) is Fibromyalgia Awareness Day, and Mrs Tapp, 50, hopes it will help people realise how the disease affects lives.

She was only diagnosed with the condition three years ago, after a succession of doctors failed to explain the severe pain in her face and hands, and later her shoulders and back.

Other symptoms include forgetfulness, often leading sufferers to fear they are developing dementia, and sensitivity to lights and sounds.

She said it has dominated her life, but many people struggle to understand it.

“I didn’t even know what it was myself, I thought I was a hypochondriac. When I was first diagnosed I sat and cried with relief that I wasn’t going mad,” she said.

“I was off work at Virgin Media for six months before I was made redundant, and on and off for several years before that. At first I fought against it, worked full shifts, but while others were going out for drinks or dinner after work I just went straight to bed.

“Eventually it got to a stage where I was falling asleep at my desk. They were understanding in the end, but at first people at work were suspicious and just thought I was lazy.

“You can deal with the pain, but the fatigue is the worst thing. You never go into deep restorative sleep so you are always tired.

“I have lost a few friends as you can only not turn up a certain number of times before enough is enough.”

Mrs Tapp, who lives in Cresswell Drive with her husband Chris, 51, said the disease has also left her unable to look after her two grandchildren without support.

“I have to get my mum round, she is in her seventies, and she has more energy than I do,” she said.

“For my 50th birthday party in March I slept during the day to save up the energy. I was in bed the whole week after, though.

“My support group in Calne are all people who share the same issues.

“Sometimes you find yourself thinking, ‘she looks fine she can’t have it’, and realise you’re thinking exactly what people think about you.

“That’s why it is so important to raise awareness.”

Mrs Tapp makes awareness-raising jewellery to bring in a small income, and hopes to sell it for fibromyalgia research.

For more information on fibromyalgia, or to find a local support group, visit www.fmauk.org.

 

The above, with comments, originally appeared here.

 


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