Ciara MacLaverty has had ME for 18 years. She describes how she has coped with a disease that has left her completely exhausted and, at times, even bed-bound
ME Awareness Week takes place this week and I have been ill with ME for 18 years. I was an 18-year-old arts student when I was struck by a virus that resulted in ME (Myalgic Encephalomyelitis) - an illness I had never heard of. I have been unable to work since then but I often wonder what I could have been - a teacher, a psychologist, a TV dramatist?
My father is a writer and he encouraged me to write as a hobby. Writing with ME involves lying on my side in bed with my laptop computer opened sideways like a book. I can write in short spells, but after an hour, I'll feel the familiar headache rising and will have to stop for the day. This is a good phase.
Fabrication and embellishment are the tools of the writer, but no amount of exaggeration can describe the severity of suffering in the severe phase of ME.
The greatest misconception surrounding this dreadful illness is that it's "mainly due to tiredness". ME is also known as Chronic Fatigue Syndrome and most sufferers hate this term for its misleading connotations. Fatigue doesn't begin to describe the experience of being so ill that you can't turn in the bed.
In the late 1980s I was so "fatigued" that I couldn't sit up, watch TV, chat or hold a knife and fork. I was in constant severe pain and I felt sicker than I could describe - almost as if I was dying. My parents spoke to Maeve Binchy who wrote an article for The Irish Times describing my plight and thereby the plight of ME sufferers everywhere. Those were the early days when I was naive enough to think that decision-makers and governments would rush to fund research into this Living Death Syndrome.
Eighteen years on and many ME sufferers share my disillusionment that the UK government has only funded research studies that focus on psychological management strategies, such as "pacing" energy levels and coping with limitations. It's a bit like using talk therapy for Parkinson's disease or carrot juice to treat cancer. One of the few charities (worldwide) that is looking through microscopes for the root cause(s) of ME is MERGE. It's headed by Irish man, Dr Vance Spence - my friend and fellow sufferer. Vance is an unsung hero of the ME research world and he will give several public talks in Ireland as part of ME awareness week.
Recent privately funded studies by MERGE have uncovered biochemical abnormalities in the circulation of adult ME patients - suggesting a persistent infection that keeps the immune system working over time. MERGE's next study is the first ever biological study on children - incredible, given that there are probably around 20,000 children with ME in the UK alone.
After four years of severe ME, I began to see some partial remission - I was able to return to university part time. It was an enormous relief to start reclaiming my life. But I had a clear activity ceiling, never getting beyond about 70 per cent function on my best days. In 1998 I had a relapse that left me bed bound for another four years. I've tried countless treatments - from anti-virals and hormones to vitamins and homeopathy but none worked.
I currently average two to four hours out of bed a day. I'm also taking a night class in creative writing. I chose poetry because short poems seem more manageable. Everything has to be bite-sized. Often I've had to leave the class at the interval - feeling faint and nauseous from simply sitting upright. But I'm enjoying the experience. Several of the poems will be published in a forthcoming anthology including work from other disabled writers. Overlooked is the poem which I hope best describes the incarceration of ME. It's about indoor sunbathing when I'm too ill to go outside. And even this is an improvement. Many ME sufferers cannot tolerate sunlight and their bedrooms are dark by night and day. Only the right kind of research will stop them being overlooked.