Tag Archives: writing

Chronic pain, Spoonie

110%

Leave a comment

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!

Chronic pain

Pain like a vise on my head…

Leave a comment
A cartoon of a white woman with a headache. The headache is visualized by the presence of a vise on her head.

I am starting to despise the lovely, cool, pre-rainy days of my life. While they were once a cue for a day spent reading on a couch with my cat or wandering into the wilderness with my dog they are now CRUSHING my brain with the intensity of their barometric pressure.

Not only am I in a fairly intense and uncomfortable level of pain, non-stop until it actually does rain, I am also sitting here – or more accurately lying here – watching all the have-to’s and want-to’s pile up around me like last week’s laundry. (Which happens to actually be one of the have-to’s.)

It’s not as though I can just get up and do all these things feeling this way. Have you ever managed to go about your daily life with a rhinoceros on your head?

You can carry the weight of intense pain for a little while. Maybe you can make it through your morning commute, or school drop off, maybe you can do one meeting, but this heavy beast is just pressing down on you, making each step reverberate through your skull like the base of a bad EDM song. You are going to miss important things, like stop signs and questions, and time.

Eventually the weight becomes too much and you have to lie down. Close the curtains, turn out the lights, and give in to the pain. For me, these days are endless, difficult trials that I have to get through in order to -hopefully- have brighter ones tomorrow.

However, I have a chronic, deteriorating, poorly understood disease. So, tomorrow isn’t as bright as it could be. I roll the dice every time I go to sleep.

Will sleeping on my ridiculously sensitive scalp cause another high level migraine?

Will there be another impending doom storm system resting against the Rocky Mountains?

Or will it be sunny and I will have the ability to move, to clean, to create?

Whatever I roll, I usually get a relatively balanced mix of good days and bad but this summer is different. This summer is hard. The storms are angrier, more pressured, and they just hang around bullying me for days. My to-do’s are piling up, my want-to’s are looking like distant dreams, and I am beginning to feel a bit like an incompetent version of the Roadrunner.