Severe Myalgic Encephalomyelitis is basically a living hell.
I am not the most severely affected by M.E. either. Far from it. One of my close friends has 5 times had to be resuscitated because she stopped breathing completely due to severe M.E., other friends are completely housebound and bedbound and need help with toileting and all personal care (they are unable to even brush their own teeth or feed themselves and often cannot speak or read or write or do almost anything except just lie there in a dark quiet room in agony) and others have died from the illness. M.E. is a neurological illness of extraordinarily incapacitating dimensions.
I’m also fortunate to have the support of most of my family; many people aren’t so lucky due to the many myths and baseless propaganda that has been circulated about the illness (and accepted as truth by many people unfortunately). I really have no idea how I’d cope without my parents, my sister, or the handful of amazing pre-illness friends I have that have stuck around or the great new (and also ill) ones I’ve met through my computer. Plus the brilliant doctor I’ve finally found. I am very, very lucky in some ways.
This paper has taken me 8 months to write, on and off, bit by tiny bit. People need to know that those of us with M.E. desperately need so much more help, support, understanding and money for real research than we are currently receiving.
I’d also like to add a quick but heartfelt THANK YOU to the wonderful people out there who helped me (and my illness damaged brain) so very much with the editing of this paper. They know who they are.
http://www.ahummingbirdsguide.com/adayinthelife.htm
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Like Jodi, almost all of my pre-illness friends drifted away. They're willing to socialize if I can go along with them to their kid's soccer game, or jet-skiing, or hiking, but are "too busy" to socialize if it means just sitting in my living room doing nothing; they're too caught up in the busy-busy-busy lifestyle to waste time chatting in a situation where they can't multi-task. But the effort of getting to the soccer game at the far end of the county by bus (I'm not allowed to drive due to the fainting spells) would exhaust me too much to enjoy the game, and physical activity like jet-skiing or hiking ... HA!
Like Jodi, thanks to the internet, I have made new friends to replace them. Of course, having good friends in Israel and England and South Africa is not the same as having friends nearby who can be dispatched to run errands, but at least it's someone to talk to. And, like Jodi, I have a whole support group full of wonderful friends, who are also ill. None of these new friends can be of help with the things I really need, like cleaning the house, but they keep me from feeling isolated when I'm stuck in bed, and perk me up when someone who resents my activism starts making ad hominem attacks. I know where I can always go for a round of applause for using a portion of my limited energy to educate and raise awareness that CFS is real, and it's neurological, not psychiatric or hypochondriacal in origin.
I don't have siblings/children/spouse to help me, and my parents are elderly, 3000 miles away and with their own serious health problems, so even if I moved closer, they can't take care of me, either. You muddle through the best you can. If that means stashing a case of Ensure and a couple boxes of Pop-Tarts under the bed for the days you can't make it to the kitchen to cook a decent meal, well, at least you're eating. There's protein/vitamins/minerals in them, and that's what it takes to get well. (Yes, there ARE healthy things in PopTarts. Go read the label. They're healthier than you'd think.)
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