Systemic best describes the characteristic of ME/CFS: the exhaustion, like a lead weight, hits muscles, organs, and brain creating an overall resistance to movement. Physical energy is engaged in a battle against spirit.
Two weeks ago, I attended wedding preparations and celebrations, babysat my five-year-old granddaughter, and felt like I was finally progressing beyond this disease. Optimism convinced me that it was time to start exercising more, to set a routine of rising early, to begin regaining the pattern of normal living. Could it be that I’m actually turning a corner? I dared to hope.
And, then…WHAM! Like a balloon deflating, I ran out of steam and the symptoms of ME reared up, mocking my naiveté: sweats, rapid heart beat, constant fatigue, loss of cognitive functioning, breathing difficulties, headaches, and IBS.
Yesterday, I ignored the symptoms and determined to do something useful, decided to take the garbage out. Since Ric was not here, and my walker was in the back of his vehicle, I decided that I could ride the garbage to the dumpster on my mobility scooter.
Proudly, I mounted the beast, adjusted the bag between my legs, and set the speed for 8 km an hour – the park limit. I made it around the nearest curve when the scooter decided to quit – just coasted to a silent stop. Luckily, a young woman spotted me and offered a hand. We pushed it back home, and plugged in the charger, hoping that was the problem, but then a strange noise started to emit from the speakers and neither of us knew what to do.
Another neighbour responded to the turmoil by offering to get her husband and running the garbage for me. I felt so humiliated. My efforts had backfired – instead of helping, I had only managed to be a nuisance.
Done in, I returned to bed, resigned. It could have been much worse, I realized. I might have made it across the park before the scooter died, and would have been stranded, unable to get back home.
I have limits, I reminded myself, flashing back to a conversation I’d had with my doctor over a year ago. The limitations are real.
So today, I will once again cull back my expectations, shelve the self-improvement goals, and fly the white flag of surrender. ME has won this round.
I haven’t given up, though. ME/CFS may be systemic, but it’s not constant. There will be another reprieve, and when it comes, I’ll be ready – spirit armed with ambition.
2 thoughts on “Systemic Describes ME/CFS”
Wow. I’m impressed and inspired. I won’t discount my own disease by comparing and down playing it because when you are in the throws of it, that’s all that matters. We are all so different anyway. It is not helpful when someone tells you exactly what you should do about an illness, or what their aunt did, or what they read would cure it. As a matter of fact, I find that intrusive and sometimes even insulting.
I’m so glad you write here though. I feel a lovely connection.
And now that I know more, I feel a new level of understanding and respect.
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You are so right about the unsolicited advice. Not helpful. Comparisons are not useful either. What is it that you valiantly face each day?