M.E. is characterized by exhaustion after exertion and is systemic in nature. While I am able to do more than I was when this post first appeared, it continues to be an issue. The line between able and dis-abled is very thin, and now that we are on the road, I am forced to re-examine expectations and reality.
“Before illness,” I tell my therapist, “I had things I was working on – I was engaged with life. Now I can’t do any of that. I feel useless.”
She nods. “Yes, that is what illness does.”
I’d had two days of feeling better. Two days of being able to sit up and actually do a bit of housework. “I felt so good that I actually started to allow myself to make plans,” I tell her, choking up.
“That is the trouble with this disease,” she explains. “Patients have good days, and they do things, and it sets them back. You need to learn to enjoy the days you are feeling better, without increasing your activity. Your body needs rest; rest is what is going to get you well again.”
I look away. How can I tell her about the messages that have been haunting me these past days?
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Writer, avid reader, former educator, and proud grandmother, currently experiencing life through the lens of ME/CFS. Words are, and always have been, a lifeline. Some of the best adventures, I'm discovering, take place in the imagination.