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Page last updated at 10:53 GMT, Friday, 5 February 2010
Woman is bedridden in the dark with ME for 14 years
Tired woman
Chronic fatigue patients constantly battle tiredness

Imagine feeling so ill that even the soothing voices of your loved ones cause you excruciating pain.

Amy Bakewell, 31, from Thornton has spent most of the last 14 years of her life confined to her bed as a sufferer of myalgic encephalomyelitis (ME).

During the worst periods of illness she was unable to speak, and lived in a completely dark and sound-free room.

Despite this, Amy refuses to give up hope that she will one day regain "a genuine quality of life".

Living with ME

On 15 March 1994 whilst walking in the Peak District with the Scouts, 15-year-old Amy slipped on wet stones, banging her head and crumpling her neck under the weight of her backpack.

Amy believes the resulting concussion was likely to have been the trigger of her long-term illness.

By the age of 16 her health had deteriorated and, despite putting in a huge amount of effort, Amy was unable to take her GCSE exams.

A woman opening a window

In July 1995 she visited a neurologist who diagnosed her with ME. Just a year later and she was unable to leave her bed.

The worse period of her illness lasted for six years, during which she could barely move and had to be spoon fed whilst still lying horizontally.

She had to be helped onto the commode right next to her bed, and could bear no light or sound.

"My windows were blacked out and shut constantly but even the noise of the passing traffic hurt, it was like something cutting into my flesh, for the six years it lasted for."

Amy's mother Sue said it was difficult to see her daughter in such pain, "The isolation has been quite a torture in itself because Amy is a social person, but she couldn't tolerate to converse, she couldn't talk when she was at her worse."

Looking to the future

In 2008, 31-year-old ME sufferer Lynn Gilderdale was assisted in her suicide by her mother Bridget Kathleen, after battling the illness for 17 years.

Sue said she supports Amy in any way she can, and can understand the Gilderdale's situation.

"If Amy was in the same situation as Lynn and Amy had come to that point, lost her hope, yes I think that I would have helped Amy.

"Of course you don't want to lose your daughter, but at the same time she knows now that Lynn is free and out of pain."

For now Amy is happy that she has been regaining some of her strength over the last five years, and takes comfort from small steps, such as the ability to walk downstairs or listen to music.

"I think you just accept what's happened to you, try to make the most of what you can still do and just get on with things really.

"I try not to dwell too much on how miserable life is because it will just drag you down and down."

More about ME

The main symptom of ME, also known as chronic fatigue syndrome (CFS), is an overwhelming and continuing tiredness which substantially effects the everyday life of a sufferer.

A woman in pain
People with ME can have wide ranging symptoms, including acute joint pain

Other symptoms can include muscle and joint pain, disturbances in brain function.

To be diagnosed with CFS an adult must have severe chronic fatigue for at least four months with no other medical condition identified as the cause.

The cause of CFS is unknown, but some experts belief it may be triggered by a viral infection, or a complex mix of physical and psychological influences.

There is no known cure for the syndrome, so treatment is based on easing symptoms and making patients more comfortable.




SEE ALSO
Mother cleared in ME death trial
25 Jan 10 |  Sussex
Myalgic encephalomyelitis
24 Oct 08 |  Health


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