Woman's life blighted by devastating scourge of ME

Little did she know her world was about to be turned upside down.

Her sudden illness at the age of 26 was diagnosed as ME, a devastating neurological disease with multiple life-changing symptoms.

Caroline went from being a healthy young woman who loved dancing to an invalid. Suddenly she was not able to walk down the stairs.

The main effects of Myalgic Encephalomyelitis are severe and persistent fatigue or exhaustion most, or all, of the time.

Now aged 52, those with severe ME like her can spend years or decades being as sick as people are only in the last weeks before they die.

Caroline said: “I was fortunate to be referred to an ME specialist when I first became ill.

“This meant I got a proper diagnosis – amazingly many medical professionals don’t believe ME is a real physical illness.

“Having ME involves fighting a battle on two fronts. It entails managing its hugely debilitating symptoms, as well as coping with the world’s lack of understanding.”

She is able to get about her flat in Lewes High Street, but otherwise is wheelchair- bound. Sometimes she can spend as long as four days on end not being able to get outside at all.

Caroline, who said it had taken years for her to accept her physical restrictions, said 25 per cent of people afflicted with ME are completely housebound.

She grew up in the village of Kingston, attending the local primary school and later Priory School in Lewes before University College London where she studied History of Art.

She was employed as a care worker in Brighton and planning to be a psychotherapist when the scourge of ME struck – and put paid to any hopes of a career.

Now Caroline is organising an ME awareness event in Lewes on Saturday, May 12, at Cliffe Bridge from 11am until 3pm. This is in conjunction with the Missing Millions protest taking place globally on that day.

People with ME want the world to understand this devastating illness, and demanding funding for research and proper support for patients.

In the last couple of years Caroline has been publishing a blog at www.caraswrong.wordpress.com.

In it she writes about the challenges of living with chronic illness.

She said: “I find that producing this blog gives me a sense of purpose and hope. It makes me feel I am doing something positive, and reaching out to others in similar situations.”