‘Uncertainty is the worst thing about living with my ME condition’

From the Daily Gazette, Colchester (12 May 2010)

FROM day to day, Vivienne Mills doesn’t know what her illness will enable her to do. She suffers from myalgic encephalomyelitis – ME or chronic fatigue syndrome. On good days, she can get out in the garden, or do housework, but on bad days, she struggles to get out of bed.

Mrs Mills, chairman of the Colchester ME Self Help Group, said “uncertainty” is among the worst things that come with suffering from the condition.

She said: “I have got to pace myself through life with the realisation that I never know when I might find it too much, and have to stop and change plans.

“ME becomes a way of life. My family have had to adjust to my limitations over the years. I cannot join in everything they do together and I know it’s not been easy for them.”

Mrs Mills traces her illness back to an episode of glandular fever in 1978, which she was never able to fully get over.

“I had been active when I was younger, but never got that back,” she said. “I married and had two daughters, and then in 1990, I really started to feel unwell.

“I just felt very tired, had headaches and terrible joint pain that gradually spread over my whole body, but then the next day I would be fine.”

Her GP was unable to diagnose what was wrong with her. Mrs Mills came across ME as she researched her symptoms.

She said: “I’d never heard of it, but it seemed to fit my condition. When I put it to my doctor, he said ME wasn’t a condition acknowledged by doctors.

“I became convinced it was ME I had, but I just kept quiet. A lot of doctors then believed ME was a form of depression and I was offered Prozac, but I refused.”

Mrs Mills moved from Stanway to Prettygate with her husband Colin, in 2000, and transferred to a new GP, who referred her to an expert in London.

The expert diagnosed her with ME, a verdict she described as “such a relief”.

“It was great to know somebody finally believed me and accepted something was wrong,” she said.

“With that acknowledgement came a programme of treatment, with medication for the pain relief, muscle problems and headaches.”

Mrs Mills said there is “no set pattern” to how ME affects people.

“Everybody is different. When you’re referred for diagnosis, there are blood tests for other conditions, and if nothing shows up, then you have ME if your case history is right.”

Mrs Mills got involved with Colchester ME Self Help Group, which celebrates its 20th anniversary this year, soon after her diagnosis.

The group was set up by Irene Waller and former town mayor Ken Cooke. It has more than 200 people on its books and holds quarterly meetings addressed by experts in the field.

Mrs Mills said: “It’s good to have other people to talk to who are going through the same thing and support each other which, along with raising awareness of ME, is our main achievement.”

Despite the acceptance of ME, Mrs Mills said sufferers still face prejudice.

“Even with all the research and information available, there are still people who refuse to accept it as a condition, with some doctors continuing to hold their own theories,” she said.

“Some employers aren’t always sympathetic, and it doesn’t help someone who is ill to be placed under pressure to work.

“I hope the new GP sick note system will help sufferers, with doctors setting out what people are healthy enough to do, rather than that they are simply unfit to work.”

For more information, visit www.colchester-mesh.org.uk

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