By Corina Duyn in the journal.ie.
I have been ill with Myalgic Encephalomyelitis (ME) for 20 years.
But it is only in the last year, and especially in the past six months that my most basic needs are not being met – at a time when my illness has become more severe and my health has deteriorated.
Back in 1988 when I first became ill, I didn’t realise it would result in a long-term disability and initially, I received care from friends and lived for a month with my brother and his family in Kenmare.
Then I returned to my own home in Lismore and looked for care support. I was initially told that home help, as it was called in 1998, was for the over 65s only. A local council representative helped to get me a few hours of care per week.
After several severe relapses in which I found myself totally paralysed for short periods of time, which lead to hospitalisations, my home help hours were eventually increased to seven days a week – up to four hours a day.
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