Thursday, July 14, 2011

What's it like to have severe ME/CFS? It's a living death and hell in solitary confinement

BEFORE a viral illness struck me down in 1999, I never imagined that such a disabling and painful illness could exist without it being taken seriously by British doctors and health care professionals.

It's a lonely feeling and tough to take when you see the scepticism in their eyes and/or hear it in their voices. When they don't take M.E. seriously how are others, family and friends, expected to understand or even believe us?

Watching the following excellent video from entitled "What is it like to have M.E.?" made me cry.

Today, my answer to the question "What is it like to have severe M.E.?" would be this: "It's a living death and hell in solitary confinement".

Tomorrow, I might be feeling worse but my answer to the question would still be the same because every day is bad.

Some days even are worse if I do too much, other days are horrendous for months on end if I get an infection or go out.

I've been too ill to sit up long enough to go out in a wheelchair and manage the basics of day to day life after I return home.

Hopefully, now that I am on painkillers which are helping me to control some of the symptoms, next year will be different.

If you, or any person you know or care for, are suffering from severe M.E., please contact the The 25% M.E. Support Group, the UK's only national support group for people severely affected by M.E. (c. 25% of M.E. sufferers are severely affected, hence the name).

There are two separate forms of Membership in order to try to provide a suitable service for as many sufferers as possible, whether severely, moderately or mildly affected by ME and, of course also provide support to carers of ME sufferers.

Credit: Video courtesy of
Hat tip: Rachel M @bluecoffeemug / YouTube (read comments)

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