These blinds have been sitting on my deck for longer than I care to admit. They symbolize the double work of chronic illness.
See, I am intermittently functional. There are days that my body can do just about anything, and then there are days where even my hair hurts. The ratio of functioning days to non-functioning days can vary.
About a month ago, I was doing pretty well. My body was keeping up with my mind and my spirit was soaring. I thought I’d found a brilliant balance between rest and work to keep myself functional.
When it came time to clean my blinds I knew better than to try to do all at once.
“Easy does it,” I coached myself, and did just two sets of blinds one day. Got them down, got them clean, got them back up.
Man am I nailing this adulting thing (I thought).
The next day I got down three sets of blinds, got them cleaned and reinstalled two of them and then my body said NOPE!
Whether or not my body surges into a flare depends on a multivariable calculus with factors I am still identifying. I realize the heat, my consumption of tomatoes (I know they’re nightshades but it’s the summer and they bring joy!), physical exertion, and maybe my cycle (?) all contribute. It’s not as simple as single cause and effect.
And this flare has been BRUTAL. Headaches that make me want to shave my head, extreme fatigue, like, there needs to be another word for it– cellular rebellion? Mitochondrial strike? Like nothing I’ve experienced before. (Yes, we checked my levels they’re all wonky and we’re rechecking them in another week to see what can adjust).
So this last set of blinds has been sitting here on the deck. And now they’re dirty again.
Chronic illness carries with it an invisible work load. Managing meds, running spoon calculations so you don’t burn out and get stranded, meal planning for those days when “Mind over matter” is simply not possible. (Peanut butter on a spoon counts as meal planning in that instance).
And these blinds, which at first felt like they were mocking my fragility, teasing me for my inability to finish a task, now feel like a symbol. A symbol of the double work, representing the extra load, the jobs that need to be done twice. And I won’t feel guilty anymore.
Shaming myself for something I cannot control is really twisted and does nothing to improve the world.
Yes, I have dusty ass blinds on my deck. Not very classy at all. But I’m getting stronger every day and one of these days I’ll hose these puppies down and re-install them. Not today because it’s a million degrees. And that’s NOT procrastinating, that’s considering the circumstance. And my challenge is to remember to cut myself some grace. To soften my standards.
So, for you, dear one, remember to offer grace. To your neighbor, to yourself.
Take good care of yourself.
You are loved by me and others.
xox
Pretty Good Ugly 