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I've lived with my illness for the past 5yrs. For me it was post viral as is the most common.
It is a neurological illness that shares some cross-over symptoms with Parkinson's disease and MS.
It is still little known despite there being around 250,000 sufferers in the UK alone. The first case having been diagnosed during the 1930s but significantly, by 1955 the Royal London Hospital was forced to close when up to a third of staff suffered so badly they could not work or, return to work after their initial illness/virus.
There is little research done by government and some in the medical profession - particularly among mental health professionals, deem it to be 'all in the mind' - a 'non-illness'.
NB: The World Health Organisation, recognises ME/CFS as the neurological disease it is and so does the UK Government.
ME is diagnosed as being mild (may still be able to work etc), moderate (unlikely to sustain regular work) and severe which is dire. One is most probably house bound and quite possibly bed bound, and requires personal care.
I was forced to retire from my teaching career at 55 and am now just 60. ME, is a largely, invisible and most debilitating illness.
I have only recently, come to terms with my 'new' life, what I lost and all those who have over time, drifted away ...
Saying NO so often to people who you care about is hard. But when those people fail every which way to have any real measure of understanding - that is also, quite devastating. And one can easily become isolated and worse, invisible. Sufferers of ME can look perfectly well and OK and this is a huge part of the problem - for me.
My quest now, is simply to put my enforced, 'Isolation' out there! I am still reasonably active day to day despite my many limitations and would love to speak to, or meet anyone out there who, can manage to maintain a positive outlook despite whatever it is they suffer with.
I don't wish to sit and moan about my fate. I want to live my life!
That said, I am a compassionate and empathetic character - a good talker - and listener.
I love the Arts, music, radio and some TV, film etc, social history, crime drama, foreign language films. I do family research, and travel research. I like to keep the 'little grey cells' busy - or they die!
Obviously, I am very limited on certain days but I always do what I can.
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