In March 2003, at the age of twenty, I developed a mystery illness following a viral infection. Two years and numerous medical appointments later, I was finally diagnosed with Myalgic Encephalomyelitis/ME (sometimes controversially referred to as Chronic Fatigue Syndrome/CFS) a relapsing-remitting neurological disorder similar to Lyme’s Disease, Lupus or MS.
Within weeks of diagnosis a reaction to medication triggered the first of a string of relapses that left me bedridden by the age of twenty-three. After two years lying flat in a dark, silent room, too ill to read, see friends or watch TV, I was admitted to one of only two NHS inpatient services that deal with ME. The admission was intended to last only four to six weeks; when I was finally discharged six months later I could sit in a high-backed armchair for 15 minutes at a time, stand for 10 seconds with the help of a frame and wheel my wheelchair the couple of meters to the bedroom door.
Since then my progress has been slow but sustained and several years post-discharge I can sit out of bed for an hour at a time and read, study, write or craft in limited bursts. For the most part, after years of searching, I have found the tenuous balance between doing enough to avoid deconditioning, while not doing so much my activities can’t be sustained from day to day.
I launched this blog in March 2013, to mark the tenth anniversary of the start of my illness. Words cannot convey what it is like to be ill for a decade without a moment’s respite, or to reach the age of thirty with no career, no independence and little prospect of a partner or family.
Current treatments for ME are entirely palliative and little funding goes into biomedical research. Despite decades of medical evidence to the contrary, ME is often wrongly presumed to be psychiatric in origin (although a psychiatric cause would be no less genuine or deserving of care) and the stigma of this can sometimes be harder to bear than the illness itself. The chances of full remission are remote and the risk of relapse high but like many, I will never give up hope of eventual recovery.
While I will always grieve for the life I have lost, I cannot stay in limbo waiting for health that may never return, or fearing relapses that I cannot prevent. If this could be as good as my health ever gets, I need to find ways of living in the moment, and learning to be happy with the little I’ve got. I have no idea what the future may hold for me, but I intend to make the most of every day that passes and I would be honoured if you’d join me in that journey.