At this rate, 2022 is coming to a close and I’ve managed only a few posts. ME/CFS sidelined my progress as I scrambled to re-establish a baseline that appears to be taking shape now. But this isn’t the first time that baseline has appeared to be showing itself. So I’m semi-encouraged, but mostly holding my breath. In the meantime, I’ve been gradually developing a shop on Etsy and how I’m going to tie everything together remains to be seen/known. But I’m proud to have persisted in the fits and starts available to me here and there along the path.
What is a baseline, you might wonder. For someone with ME/CFS, it’s the level of activity and alternating rest that can be relied on, for the most part, to not trigger worsening of already existing/perpetual symptoms, a crash or relapse. It is found by mostly resting. Rest, good nutrition, supplements and medications take all of your time and can persist for months or years until you find you can get away with something like prepping a meal once a week (not doing the dishes afterwards or putting leftovers in the fridge, but hey, progress). So, you do the thing you can get away with, the one thing and it’s added along with resting, nutrition, etc. What’s glorious? Finding you can shower once a week without severe backlash. But it’s important to maintain the one new thing for at least a month before adding any other new things. The tenacity required shames every doctor out there who presumes this illness is psychosomatic or a result of mental illness. It asks for a level of mental stamina and willpower most never have to discover. Not that I’m bragging? I’m just fed up with what I see now emerging for folks with Long Covid. The same b.s. with people in key positions concluding the problem is the patient, not the lack of knowledge about post-viral illness. So, baselines. I had a beauty of a baseline before my 2nd Pfizer jab. That was over a year and a half ago. I’ve avoided the boosters for obvious reasons and having come close to a baseline previously, I’m clinging tightly to the progress made at this point.
I’ve managed the gradual work towards the shop on Etsy over the past 12 months by eliminating outings, cutting down on basics like meal-prep, dishes, laundry, avoiding news when it’s especially stressful (if possible), curtailing lengthy conversations, literally insisting on no-communication days sometimes and other things folks just take for granted. Multi-tasking has mostly gone out the window. One thing. At a time. And I have been sure to take long stretches of rest without doing the one thing I can do. I say no to others more often than I ever knew I could before and I say yes more often to my needs and desires as I’m able.
Can I just say…so few realize how precious each breath, each habit, each thing taken in stride is. I see pictures of a hike I went on a few years back with my sister and I just grin and catch my breath. It’s almost like you might expect someone to react if they’re coming across the photo of the time they met their most beloved actor or writer or athlete. Hey, look, I did a thing called living that day. I paid heavily for it. It was worth every ounce of pain and backlash.
Life is incalculably valuable. And that is all I have to say given the winding down of this day and my need to conserve.
Here’s a link to my humble, but gradually growing, shop: Digital SoulSpeak
Happy Holidays!
J. Ruth Kelly 