Humans of ME/CFS

My spirit floats off the couch, gracefully. But she has to turn around, gesture at me to get up, which isn’t graceful, something I’m glad about. “Can’t you show me how to levitate?”

“No,” she scolds. “Not until you’re dead, and then only if you’re nice to me.” My body rolls, grunts. There’s nothing graceful about it.

Or, I ask her, “Remember the story about my husband’s graduate seminar? How the professor’s back pain forced him to teach lying down on the seminar table, the students sitting around him. Do you think they’d let me move my couch into the classroom? And bring some pillows for my neck and to put under my knees?”

“Your legs still work, and your back pain isn’t that bad. Get up.”

I do, “But will I get dizzy driving to school? Will my legs go numb walking across campus? Will the floor move in the classroom, again?”

To distract her and myself, I think about that woman I met in the CFS/ME doctor’s office when I was finally diagnosed. Curly, blonde hair, attractive, she didn’t look sick, but I could see the pain etched around her eyes and hear it in her soft voice as she mentioned the skull-crushing headache. I knew that pulling in of her body to steady herself against all the movement and noise around us. It was the first time I understood I wasn’t alone and invisible, that if you looked closely enough, the act didn’t really work.

The problem, I try to explain to my spirit, is bearing your own weight. She doesn’t get that. “My bones, muscles, they all feel like lead, and when did the air around me become a raging river current I have to drag my body through?”

“Your last day of cycling,” my spirit answers. I returned home after just a half-hour on a level road. I couldn’t imagine my light frame moving easily through air ever again.

“Some of those antidepressants fooled me into feeling light, again. There was that one making my pupils huge.” When the doctor asked how I was doing at the follow-up, I told him, “Great!” He laughed, seeing my pupils and took me off the med immediately. Another med for Fibromyalgia gave me soaring nightmares. They could have rivaled the Romantics’ night of drugs and stories like Frankenstein, but I wanted my sleep back, wanted to wake normally, without gasping.

One Fibromyalgia med works, and yes, my pupils are normal. It’s not prescribed to help with the dizziness with driving, but it’s made that go away. My students, the cats needing feeding, my husband getting me off the couch, although he can sometimes look as impatient as my spirit. The memory of being the oldest and taking care of things when his mother had cancer isn’t a good one. I catch him checking my breathing.

And a horse bears my weight, the instructor telling me last week we looked good—all three of us—graceful.