I hear that when AIDS first happened, doctors didn’t know what was happened and assumed it was psychosomatic. Until people died, and they found a biomarker.
The problem with chronic fatigue is that you don’t die. With no disrespect intended to those with terminal illness, at least you know that the pain and restriction will end- usually you’ll either die, or you’ll recover.
Quality of life for people with chronic fatigue is worse than those on kidney dialysis or with cancer (study).The suicide rate is six or seven times the rest of the population.
I can move my arms, my legs, I can talk and laugh and dance and sing and do my own shopping and cooking and showering.
But for every 30 second block of activity, I will pay. With instant heavy limbs, dizziness, breathlessness. With sound and light sensitivity that makes the smallest rustle spread pain through my body like an electric shock. I will whimper as my arms and legs tremble, as suddenly I’m spent, as my gland swell, my arm pits ache, and the touch of material on my skin overwhelms me. I will lay awake, exhausted but unable to sleep, yearning to escape the nightmare that becomes my body. Exhaustion that goes on and on and on.
So I sit up slowly. I stop moving my arms, gesturing, dancing in the car. I stay away from people I don’t know, text instead of phone call. I weigh it up before I reach for things, before I move. I hold onto my pee. I rest my body on doorways, my head on couches, I sit on the floor. I stay in bed. My partner carries me to the toilet to maximise the energy I’ll have left for talking and eating, and extend the reach of the day. I only eat soft foods so my jaw doesn’t ache. I mininise sex and try not to move too much. Mininise, maximise. Careful with those spoons. If I manage it carefully, I won’t go into meltdown.
No playing with puppies. Swimming. Hot baths and showers, laying in the sun. Staying up late. Eating out for dinner. Walking on the beach. Driving. Chopping vegetables. Using my arms to pat the cat. Watering the garden.
Not it if I want to make it through the day.