ME ruined my life, says Cheryl

CHERYL Russell has followed the same monotonous, daily routine of eating, sleeping, reading and watching television for the past four years. It is not because she is lazy, or out of work, or bringing up children - her unusual circumstances are the product of a condition known as Myalgic Encephalomyelitis (ME).

ME is a debilitating illness characterised by overwhelming exhaustion, muscle pain, severe headaches and nausea. It is sometimes wrongly associated with laziness and often not recognised as a medical condition at all.

As a result, sufferers have to deal with hostile reactions from family and friends, as opposed to receiving the sympathy afforded to most victims of illness. Next week, May 10 to May 16 is ME Awareness Week, which will be used to highlight the condition through a number of campaigns.

Cheryl, 26, of Rose Avenue, Hazlemere, had her dreams of pursuing a career as a social worker shattered when she was diagnosed with the condition four years ago. She explains how feeling tired after a day's work rapidly deteriorated into a full-blown illness.

She says: "I was 22 and training to be a social worker at Bucks College. I was on a placement with a family centre working with young children. I would come home and be completely exhausted. It was becoming harder and harder, but I thought it was just the pressure of the job.

"I started getting really bad headaches and people would ask me to do things and they wouldn't get done because I had no recollection of being asked to do them. The easiest way to describe it is to say it's like having the 'flu all the time. You just feel completely shattered."

A couple of months after the symptoms began, Cheryl was diagnosed as having ME and so began the long process of trying to come to terms with her illness.

She says: "I am quite a shy person, but I used to love skiing and ice-skating and I can't do those things any more. I try to go for a short walk each day, but I can't walk more than a few feet without feeling exhausted.

"My daily routine is always the same. I get up between nine and 9.30am. I am doing an Open University course at the moment, so I study for half an hour. After that I have to have a rest for half an hour. I go for a very short walk in the afternoon. I usually write a letter and then I will just read and watch television until bedtime. I go shopping on a Monday, but I can only manage that for an hour."

She says many people do not believe she is ill, adding: "People don't believe I am ill, or they think I should just push myself to carry on. They think it's just a case of getting tired all the time and staying in bed. It really hurts and it makes me angry, but I haven't got the energy to fight back. Sometimes I try and explain - but mostly they don't want to know.

"It gets very lonely at times. I wake up and wish I could curl up and die because I feel so ill on bad days. I have got some wonderful pen friends through the Association of Youth with ME (AYME) and look forward to the post coming. I wish people would phone more or just come round and see me just for a little while - but I haven't got that, so I look forward to the letters coming instead."

Cheryl says her family have been supportive of her illness and even had an extension built on their semi-detached house, so she would not be disturbed by noise.

She says: "The illness has made me very uneasy about noise. I can't stand the sound of traffic or clapping, and if there is a room full of people talking I can't concentrate on one conversation and it makes me very uneasy."

At this point in time there is no definitive cure or reason for the cause of ME. Cheryl says: "Doctors can give you things to relieve the symptoms and sometimes a low dose of anti-depressants can help, but there is no other remedy except a fine balancing act of rest and exercise."

Cheryl says her recovery is slow, but she is determined to pursue her dream of becoming a social worker. She says: "I want to be well and I want to work with young children. I want to work with children in orphanages in Romania and show them love - and I want to go skiing again."

According to AYME, an association which gives support to ME sufferers aged between five and 25, there are currently 25,000 young ME sufferers in the UK alone.

Sue Miller, of AYME, said: "To a certain extent mystery still surrounds the cause of ME - but we do have a doctor coming over from America who has done a lot of research into blood volumes and we are looking forward to hearing his findings.

"There is a stigma attached to ME, but it is getting better. The Government now recognises it as a physical illness."

% For more information about ME or AYME call (01908) 691635

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