Despite being reassured that this disease doesn’t directly cause muscle weakness I’m seeing post after post about my fellow SFNers losing muscle strength.
I have days when my legs feel weak and wobbly, when my hands would rather throw things than grasp them.
I don’t want to lose my mobility.
So I’m going to get moving. Every day.
Regardless of how I feel I’m going to move. I have a vibration plate for days when all I can do is stand there, a rock stepper for days when I can do more, an infinity hoop to work out my core, a GI Board for balance, and a tiny new thigh master thingy for those days when I can’t get out of bed.
I also, of course, have my dog. He prefers the long walks around the neighborhood but those require good days.
Every day I have to do something though. No more doing nothing.
This body of mine is a complex machine that needs more maintenance than most and I’m going to maintain it.
So I apologize in advance for any Spoonie Workout posts. Just know I’m not affiliated with anybody so any recommendations are because I actually use the thing. If I ever get lucky enough to be affiliated with someone I’ll tell you up front.
We don’t have the luxury of waiting to get better.
As someone who routinely has to give significantly less than 100% I have a tendency to give more than on should on the days I feel good. While I am aware that giving too much on good days contributes to being worse off on bad days, I seem to be unable to stop myself.
An ai rendering of my dumb ass feeling superhuman and burning through all my spell slots at once.
Today I was finally feeling decent enough to do some things around the house. I started the day acknowledging that it’s been a hell of a summer and I should be low key and not do too much. I read on the porch and drank coffee, talked with my mom, and enjoyed the morning.
Then I was alone in the house. Superhero me began whispering in my ear. I decided to finish the flooring the trim on the storage closet we had redone. No big deal, the tile we are using is basically just big stickers and the trim is minimal. Besides, I will feel accomplished and have an easier time resting after I finish that right?
Except I had a really itch reaction to the cold plunge yesterday and it really needs fresh water, I’ll go ahead and drain it, clean it out, and refill it. Then I will be ready for new cold plunges on bad days and be in better shape for self care!
Except I really needed to empty the catboxes while the plunge was draining because they were gross and while I am throwing that muck away I might as well clean up any dog mess in the yard so that’s taken care of.
Time to scrub out the plunge! It’s empty of water and needs a solid scrubbing, rinsing, and then refilling.
As least I sat and rested while it refilled.
Then I went to get showered because I was sweaty and gross but there was a tile on the bathroom floor that had shifted ever so slightly resulting in a gap that has been driving me crazy for months so I trimmed a tiny piece of new tile off and fitted it into the gap, then using wood floor repair markers I colored in the piece to match the pattern on the pieces next to it.
Then I showered.
Then I got dressed and it was dinner time already! Good thing there were left overs. I decided that instead of heating and eating them I would make Fried Rice.
Then I cleaned most of the kitchen so my mom wouldn’t be stuck with that mess.
Now I feel like I’ve been flattened by a steamroller.
Is it the ADHD that makes me run around like that on a good day? Unable to stop flitting from task to task until I hit the wall and collapse? I would like to employ the myriad of coping strategies I have learned for energy management but I never seem to be able to access that part of my brain while I am up and doing things.
I’ve only been disabled by this damned disease for 16 years, it’s not like I’ve had practice or anything!
Managing life with chronic illness requires savvy spoons
SavvySpoons 