‘I’m 33 And Have Been Living In Aged Care For Eight Years’

The Age

 

By Ketra Wooding in The Age.

 

I’m 33 and I live in a dementia ward, which is exactly as bad as you imagine.

But I’m not here because I have dementia. I’m here because it is the quietest (except when the residents are yelling), least perfume-saturated ward. I need my environment to be quiet and chemical free because I have Multiple Chemical Sensitivities (MCS) and ME (Myalgic Encephalomyelitis) sometimes called Chronic Fatigue Syndrome (CFS or ME/CFS).

ME/CFS is a brutally disabling neurological disease that causes chemical, noise and light sensitivity, and metabolic impairment. It is is characterised by exertion intolerance: having ME/CFS means the slightest exertion can cause severe flu-like symptoms, brain fog, and body wide pain for days, weeks, months or even years.

I was hit hard with this disease and, within a year, I’d deteriorated so much that I needed 24/7 care and, after a three month stint in hospital, I was sent to live in aged care. I have been lucky that the all the nurses and carers here are very supportive.

Before ME/CFS took over my life, I was an active 25-year-old. I had my commercial skippers tickets and was working on luxury yachts sailing the world. I had a wide range of duties, from looking after guests and standing watches, to fixing toilets, climbing up the mast, and lots of cleaning and re-cleaning surfaces. And the perks – diving with manta rays, “testing” new wines and travelling the world – were fantastic.

 

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