Humans of ME/CFS

Like most struggling with ME/CFS, I got sick one day and never got better. It was a couple weeks after my son’s third birthday. Prior to that day in July 2013, I was a vigorous exuberant mother, wife, therapist, and friend. I hiked (small) mountains, traveled the world, cooked fantastic meals, and generally loved life. Strangely, I still love life though it is now largely confined to my house. I still get sweet kisses from my son, who no longer remembers me ever being well. I get incredible support from my husband, who no longer hopes for a second child. We all fantasize about what we will do when Mommy gets well. Mostly, it’s just running, playing, cooking a big dinner, and shopping for groceries. But, part of me grudgingly acknowledges that those things might never happen. I may never be able to play sports with my kid, walk through an old Italian village, work at a job I love, or even shop for Christmas presents in a real store (thank god for online shopping!).

But, I can’t completely give up hope, so I try. I spend every day trying. I meditate, I stretch, I try diets, I try pills, and I try more pills. I get hives from those pills, I stop taking pills, I try ozone, I try hyperbaric chambers, and I try acupuncture. I try massage, I enjoy massage, and I keep doing massage. I try graded exercise and I try therapy. I try to find a doctor who will try new treatments. But, no one really knows what to do.
It’s a lonely, scary feeling to have no one who can truly help you when you are this helpless. Truly helpless. There is so much I physically can’t do. And when I try to push through and make a dinner or take my kid to soccer or go out to a movie, I am cruelly punished. Pain, exhaustion, blurry dizzy aching head, and disappointment. Just disappointed that once again I can’t. I can’t do the stuff of life.

I’m not depressed, because mostly I accept and find a new way to live life to the fullest. I cross stitch. I can read again. I have snuggly dogs. I live vicariously through videos of my son swimming, hitting tennis balls, and watching him generally loving life. It’s not enough, but it’s enough. I want to be understood and seen, but this illness is not just invisible on my skin (except when I have hives). It makes me invisible by keeping me in my home away from the wide beautiful world. I long for the day when there is help for ME/CFS and I can rejoin you all out there. I will rejoice. I will kick the hell out of life and laugh and love and run, run, run!