Discussion in 'Latest ME/CFS Research' started by Kyla, Jul 10, 2015.
I've seen this graph shared on social media. It's worth a look at:
Says it all.
This is a graphic worth printing and saving. Recently I told the neuro that I'd rather have cancer. He was shocked, even after I explained that at least with cancer, in two years I'd likely be dead or cured, instead of living for endless years, feeling more dead than alive.
I remember a meeting I had with a rheumatologist, who, after listening to me explain to him how immense an impact this illness was having on every aspect of my life, looked me in the eye and said he was pleased to tell me I wasn't suffering from any kind of serious illness. We parted on good terms, but probably only because I didn't ask (it would have been futile) "so where do we go from here?"
Just yesterday, after discussing my recent stint of being (again) totally bed bound and telling me that I need a wheelchair, a walker, a handicap parking pass, in-home care, better treatment of my POTS because it is a "downward spiral without a known cure", better vertigo meds, referrals to endocrine, cardio, nephro, and immunology, my primary said to me the following:
“At least you don’t have something serious like cancer”.
I’ve said it before and I’ll say it again. You cannot comprehend the devastation of ME/CFS unless you have it (or care for someone who is on the severe end of the spectrum)
I sure hope the tide is turning. I’m tired of fighting for recognition, respect, and adequate care.
I never say this out loud, but I do think it often. The fact that this is how we feel should say enough to the person we say it to, but sadly it doesn't. I have no idea how to explain the impact of this disease so that people would understand.
Amen, Sue. I am just so sick of this total neglect.
One of my sisters said something very similar recently. I have 9 siblings (!) and amazingly we are all still alive and relatively healthy, except for me, but my sister said pretty much what your doctor said, that none of us are seriously ill, though she knows my life has basically stopped for the last 17 years ..... I didn't bother telling her otherwise - takes too much energy!
A friend of mine with whom I am in regular contact developed Hodgkin's lymphoma seven years ago. The illness was really quite advanced and he had to have two courses of chemotherapy. He was significantly unwell and debilitated for about six months and less seriously unwell for about another six. But he has been in the clear now for six years and goes running and weight-training every day with no ill effects. He is able to enjoy life to the full and though in his sixties is planning on getting married again soon. He is one of the few people who can sympathize with my condition, and is quick to acknowledge how fortunate he was (relative to me) that he was able to get effective treatment and get it quickly.
You can also try a Google Site Search
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