Living with ME/CFS is often a matter of trial and error – the line between what the body is capable of and overexertion is never quite definable, except in the aftermath.
Yesterday, I accompanied my daughter to Costco, which was teeming with cars and people. We found a parking spot close to the entrance, and I grabbed a shopping cart to lean on until I got inside and found a ride-on cart. The day was steaming hot, the thick air burdening my lungs, but I persevered. Baby and I rode in a mobility cart and followed Mom through the store. It was only as I made my way across the parking lot, back to the car that I realized I had overextended myself. I spent the rest of the day and all last night reeling from the repercussions, my husband angry with me that I would take such a risk, and me deflated that my progress is thwarted so easily.
Costco has come to represent a measure of this disease. I was in the parking lot the day I got the call from the doctor telling me the diagnosis. We talked for an hour and half that day as she explained what my body was going through and how it would manifest and that I should avoid places like the one I was about to enter. Much of what she said that day would be lost in the horror of absorbing the news, but I remember it as the onset of change and a downward spiral.
In defiance, I tried to make the trip again, telling myself that if I took a ride-on cart, I would be fine, but I underestimated the effect of the crowds, the lights, the overwhelming visual stimulation, and fled within minutes of arriving.
I would try again months later, only to leave in tears, as the store demanded more from me than my nervous system could handle.
Since then I’ve been working with a doctor of Functional Medicine, and bit by bit I feel as if the shattered me is mending and I am gaining the stability I need to be back in the world, and so I tried again, a few weeks ago with my PSW. There were no mobility vehicles available that day, and since I had failed to bring my wheelchair, the effort was a failure; so when my daughter suggests a trip yesterday, I jumped on it.
And we did it! I drove that buggy all over the store, focused more on the baby in the cart ahead of me, and less on the merchandise and crowds, and apart from the overwhelming sounds of the place, I managed to stay intact.
It is progress, for sure.
Three months to a year, is the prognosis of this new doctor. It has been one month since we started the new treatment regime and already I am feeling better. Now all I have to do, is learn patience.
“I’m like a racehorse at the gate,” I tell him. “Just can’t wait to get on with life.”