Life-changing: ME sufferer Susan Watters, from Limerick, says the condition is often misunderstood and its sufferers unfairly maligned and called hypocondriacs. (Picture: Adrian Butler)
By Anne Sheridan
Published on Tuesday 15 May 2012 14:00
IT’S CALLED the ‘invisible disease’, but hundreds of Limerick people are potentially suffering from ME, or chronic fatigue syndrome.
The Irish ME/CFS Association will be holding a free screening of a documentary on the condition in various venues around the country this May during its awareness month. In Limerick, the screening will be shown this Tuesday, May 15, at 12.30pm.
Around 12,000 people in Ireland are thought to suffer from ME. Symptoms include overwhelming flu-like exhaustion made worse by even minor exertion (physical or intellectual exertion), muscle and joint pains, sore throats, swollen glands, disturbed sleep, impaired concentration and memory, and headaches.
Sarah Warde, co-ordinator of the Limerick ME Self Help Group, said the focus of their group, which was set up last year, is on staying positive and acceptance of what you can do. “Don’t beat yourself up and certainly don’t let anyone put you under pressure, you don’t need to explain yourself to anyone, as this is real. Be positive and focus on what you can do not on what you can’t,” she advised.
ME sufferer Susan Watters, 50, from Old Pallas, described the condition as presenting “bone crushing tiredness, when you have not even a spark of energy.”
“It affects everything you do. Nobody would have this life. You couldn’t possibly fake it to this extent,” she said.
The mum of five children said while friends are sympathetic and very supportive, other people “don’t really get it”, as many people claim various degrees of tiredness for all sorts of reasons.
She believes she contracted the condition after getting meningitis 16 years ago. While there is no known specific cause, it can be linked to prolonged stress or a virus.
The condition can be hard to diagnose due to the range of symptoms it presents. Initially she was told “to get out and exercise” in the hope that she might feel better. But, she explained, “When you exercise you feel worse. You are laid up for hours, even days.”
Ms Watters said each day she has to gauge how strenuous each activity will be and allow time to recuperate thereafter.
“Depending on what you do, it’ll get more severe. You have to plan your whole day/week and pace yourself. Housework gets left behind, you just do the basics and as you can do it.
“It’s very frustrating. There are constant thoughts of about what you could do. It’s very hard to keep being positive, but I try to keep the bright side out. I don’t want to be moaning about it, but it is depressing and you lose a lot of confidence with it.”
Previously she enjoyed swimming, horse-riding and orienteering, and even nights out with friends are seriously restricted. “You do mourn the person you were and the life that you had.” The group in Limerick meet in the Strand hotel once a month, which she has found to be of great benefit. “You can feel very alone, so it’s a huge relief to meet someone who has it.” See www.irishmecfs.org for information.