Edwina Fearnley is 55 and yet she barely has the energy to get dressed and hardly ever leaves her home.
Edwina suffers from Myalgic Encephalomyeltis (ME) an often belittled and poorly-understood condition.
“It’s not widely recognised for people to know what it,” says Edwina from Alwoodley, Leeds. “They think ‘pull yourself together’.”
Edwina is just one of the 250,000 men, women and children in the UK affected by the chronic, fluctuating condition.
By sharing her story for ME Awareness Month in May, Edwina – who became ill after catching a stomach virus in 1999 – hopes to help others understand what it’s really like to live with ME.
“The first doctor I saw told me there was no such thing as ME and that I had to push myself,” she says. “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.”
The biology of ME is still not properly understood, and unfortunately the disbelief Edwina experienced is not uncommon.
“I had taken a new job three months previously as a Human Resources Director with a multi-site retail company,” says Edwina. “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.
“Since then, my situation has fluctuated up and down. With the help of aids (stair lift, perching stools, bed frame and toilet frames), I manage to live independently, although I am housebound and the only trips out are to the doctor and dentist.
“I became very depressed at one stage, and was hospitalised with depression, but the depression came from being ill not vice versa,” says Edwina. “I have learned to live with my limitations, and whilst I’m not ecstatic with life, I’m certainly not depressed.”
Through careful pacing Edwina is now able to undertake an English literature course with the Open University.
“This takes up practically every minute of my activity periods.
“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.”
Edwina is a member of Action for ME,the UK’s leading charity for people with the condition.
“Their magazine always has interesting suggestions and coping strategies,” she says.
Action for ME offers support and information to anyone affected by ME, including carers and family members.
Visit www.actionforme.org.uk or call 0845 123 2380.