It is still belittled and poorly understood. Katie Baldwin hears about life with Chronic Fatigue Syndrome.
SHE was once an active, high-flying businesswoman. But Myalgic Encephalomyelitis (ME) has robbed Edwina Fearnley of the life she once lived.
Now the 55-year-old doesn’t even have the energy to get dressed most days, and barely leaves her home in Alwoodley, Leeds.
It’s because of a condition which sufferers say is still downplayed and misunderstood.
“It’s not widely enough recognised for people to know what it is,” she said.
“They think ‘pull yourself together’.”
She said it was hard to describe the debilitating tiredness that the condition causes.
“It’s like having really bad flu, and then multiply that by 10,” she said. “Everything takes a huge effort. Then there’s all the other things, like muscle pain.”
It was a stomach virus she picked up in 1999 which led to Edwina becoming ill with ME, also known as Chronic Fatigue Syndrome.
Though the causes of the condition are unknown, there is evidence that certain viruses can trigger it off.
Although she recovered from the virus itself, she was left with its after-effects.
She also suffered a flare-up of the Crohn’s disease she already suffered from, while facing a struggle to have the ME diagnosed and treated properly.
“Back then you had to have had it for six months before it was diagnosed as ME,” she said.
“There was no medication. They gave me antidepressants, saying I was depressed – which I wasn’t at the time.”
Then, incorrect medical advice caused her to become much worse.
“The first doctor I saw told me there was no such thing as ME and that I had to push myself,” she said.
“He told me to walk round the block every day.
“I gradually became worse until I became bed-bound. The curtains remained closed and the lights off. My family had to whisper to me. I needed help to do everything.”
She went on to remain bed-bound for around two years, by which time the condition had taken a major toll on her previously busy life.
“I had taken a new job three months previously as a human resources director with a multi-site retail company.
“But it reached a stage where the company could no longer keep the job open, especially as I had only been there for such a short time.”
Now, though not always confined to bed, the condition has restricted Edwina’s life severely.
“I cannot walk more than 20 yards,” she said.
“With the help of aids like a stairlift, I manage to live independently, although I am housebound and the only trips out are to the doctors and dentist.”
Though initially misdiagnosed with depression, later she did become depressed and needed hospital care.
“I became very depressed at one stage, and was hospitalised with depression, but the depression came from being ill not vice versa,” she said.
“I have learned to live with my limitations, and whilst I’m not ecstatic with life, I’m certainly not depressed.”
Now, she very carefully paces herself, scheduling limited activity periods each day which she currently is using to study for a degree course with the Open University.
“I don’t even get dressed because that in itself takes up a lot of energy which at the moment I don’t want to take away from my course,” she said.
“I am finding it very difficult to keep up but am determined by hook or by crook to get there.
“My tutor is also the disability officer, so is fully supportive.”
Doing too much can leave her suffering for days.
“If you overdo the activity, you get payback fatigue,” she said.
“If I go to the doctors or the dentist, I am always bed-bound afterwards.”
Edwina has spoken out about her experiences to help others understand more about the condition, especially as May is ME Awareness Month.
She feels frustrated by the way it has changed her life.
“I was a very active person prior to being ill,” she said.
“My battery never recharges properly.
“Whereas a healthy person’s battery will recharge with a night’s sleep, mine will only recharge to about 25 per cent.”
GET THE LOWDOWN
Myalgic Encephalomyelitis (ME) affects around 250,000 adults and children in the UK.
Common symptoms include muscle pain, persistent exhaustion, poor concentration and memory problems, headache, un-refreshing sleep and digestive problems such as nausea or Irritable Bowel Syndrome.
National charity Action for ME offers support and information to anyone affected by ME.
Visit www.actionforme.org.uk or call 0845 123 2380.