WHEN Jane Andrews was just 17 she caught a virus while on holiday and that, she believes, was the start of a long battle with ME.
Myalgic Encephalopathy or Chronic Fatigue Syndrome as it is called, is gaining acceptance as a genuine and serious illness but there is still widespread ignorance, given that its origins are uncertain, diagnosis a matter of elimination and there is no cure.
May 12 was ME Awareness day in the UK, where there are an estimated 250,000 people affected, and all this month Jane, 42, is donating 50 per cent of the profits from her online card business to UK charity Action for ME.
“If I sell a few more cards and make some money for the charity, that is good but more important is that we raise people’s awareness because there is a lot of ignorance about the condition,” she said.
“People say to me sometimes they wonder if they have ME because they are tired but that is almost a joke because I always feel like I have flu, all the time. I don’t get good days and bad days, just days when I can do a bit more.”
Jane pinpoints the start of her problems to a meningitis-like virus she caught on holiday in Spain as a teenager.
After that she was very prone to throat infections and glandular fever, catching one thing after the next before they gradually subsided, leaving her battling chronic exhaustion and a number of allergies.
She was diagnosed in 1996 following endless blood tests to eliminate any of a number of conditions that share the same symptoms.
“A lot of symptoms could be something else so they do tests,” she said.
“To prove ME the doctors go through a list of illnesses - if it’s not one of them then it’s ME and there is nothing they can do for you.
“You kind of become your own doctor, doing the research and finding out what helps you - everyone with ME is different.
“For me exhaustion is the dominant factor now, it controls your life - everything you do can wipe you out before you start and you can get into a rut where you don’t want to do anything because you know you are going to be shattered afterwards.
“You have to say, “No, if I don’t do this then I wouldn’t have a life”, you have to force yourself to do things.
“I know people who are bedridden or house-bound for years on end and I don’t know how they stand it.”
For Jane it means she can’t hold down a regular job.
Instead she works for herself from home, making cards and running a natural skin care products business as and when she feels able.
Her online card business can be found at www.simplycards.net and while she usually donated 10 per cent to Action for ME, this May she will be donating 50 per cent.