Whatever’s finishing me off now is good enough. Maybe they’ll even bother figuring out what it was afterword.
Fingers crossed I land on my head during one of the falls or my heart just glitches out like the rest of me. Maybe a good spasm on the way to work and I can just become a flaming pile of car wreck.
Be a lot better than suffocating during one of the breathing issues or just being stuck in one of the headache/fog days.
Edit for anyone that read the rest:
Well, I woke up this morning, oh well.
Looks like today is right shoulder and left tricep doing a tap dance while right calf muscle and foot attempt a ballerina toe stand. A little elf has grabbed the back of both eyeballs and is pulling on them like an overstretched rubber band. Needed a shower and new clothes at 4:30a.m. because I thought I could use a sip of juice to clear my throat. Both hands feel like they’re stuffed in a tub of Play-Doh.
Looks like it’ll be a good day because that’s pretty minor. Got the fireplace going and the warmth is just soaking in like heaven. 🥴
Yes, no, sort of, er, let’s just go down the list. Warning, this is probably morbid and disturbing.
At any random point either leg might just say, “nah I don’t feel like it” and down I go.
Or maybe it feels like it but only a little so it won’t move all the way or I’m limping.
Maybe today I can reach behind my back, or maybe I’m going to feel like I’m tearing an arm off just to finish using the bathroom.
Maybe I can stand up straight, or reach for something, maybe not.
Maybe if I try to lay comfortably I won’t end up with limbs that won’t quite settle all the way because the muscles don’t want to relax.
Any muscle anywhere can decide it wants to start doing it’s own little Morse code impersonation, including ones controlling things like vision, ear pressure, or random areas you don’t really consciously control.
Maybe I can see clearly, maybe it’s double vision, maybe one eye won’t follow the other eye, maybe it’s severe tunnel vision.
Maybe I can take a full breath, maybe the muscles over my ribs decided they want to cramp up if I take more than a small one.
Maybe I can hold onto something, and my hand will decide wether it wants to randomly open or just close itself up and have to be pried back open.
Maybe I feel mostly normal, or maybe someone is beating my head and multiple other areas with crowbars and ice picks while I go about my day.
Maybe I can eat something right now, or maybe one mini pretzel will trigger several hours of severe cramping and diarrhea.
Maybe when I blink an eyelid will get stuck in the down position.
Maybe I’ll yawn and my tongue and jaw muscles will all cramp and lock.
Maybe an eye will have a muscle cramp that feels like a fish hook tearing the eye out of your skull while the eye points in a random direction.
Maybe when something touches my skin I’ll feel like it’s still there for minutes.
Maybe I know which way is up but mostly likely I don’t have a clue.
Maybe a bit too much ambient noise starts causing severe headaches trying to sort out the stuff I need to hear.
Maybe I can talk well or maybe I take it easy and use small words that don’t require much vocal, uh, dexterity?
Maybe I heard what you said but there’s a 5-10 second delay before I actually know what the words mean.
Maybe I’ve forgotten how clocks work for a few seconds.
But mostly I work and move about slowly while random things twitch, glitch, ache, cramp, sting, stab…
And meanwhile I smile and look happy and give the kids a good day and lots of places to go so I can just sit for a bit and do some breathing and positive meditation until everyone’s tucked into bed for the night.
Then I can relax on the recliner with a good strong drink and cry about whatever hurt today while I think about how nice not waking up tomorrow would be and worry about the kids needing me.
Then I get up the next day and do it all over again.
Dang that sounds rough to deal with. I feel that way sometimes about the kids needing me and finding it hard to keep going, and that’s with just your typical middle age aches and hormone stuff. This is like next level body betrayal.
Spent 6 months arranging visits and tests with every type of specialist available for anything I had issues with.
They said the individual parts appear to be working fine. No genetic, auto immune, blood or other disorders could be found.
Neurologist decided their isn’t anything to look for because I’ve had an MRI before and it was clean/clear.
Only guess is a severe childhood head injury, 12+ foot fall onto concrete. The recent MRI said I chipped some neck vertebrate so long ago the bone fragments were gone. Might explain the severe childhood migraines too.
Whatever’s finishing me off now is good enough. Maybe they’ll even bother figuring out what it was afterword.
Fingers crossed I land on my head during one of the falls or my heart just glitches out like the rest of me. Maybe a good spasm on the way to work and I can just become a flaming pile of car wreck.
Be a lot better than suffocating during one of the breathing issues or just being stuck in one of the headache/fog days.
Edit for anyone that read the rest:
Well, I woke up this morning, oh well.
Looks like today is right shoulder and left tricep doing a tap dance while right calf muscle and foot attempt a ballerina toe stand. A little elf has grabbed the back of both eyeballs and is pulling on them like an overstretched rubber band. Needed a shower and new clothes at 4:30a.m. because I thought I could use a sip of juice to clear my throat. Both hands feel like they’re stuffed in a tub of Play-Doh.
Looks like it’ll be a good day because that’s pretty minor. Got the fireplace going and the warmth is just soaking in like heaven. 🥴
Are you having seizures?
Yes, no, sort of, er, let’s just go down the list. Warning, this is probably morbid and disturbing.
At any random point either leg might just say, “nah I don’t feel like it” and down I go.
Or maybe it feels like it but only a little so it won’t move all the way or I’m limping.
Maybe today I can reach behind my back, or maybe I’m going to feel like I’m tearing an arm off just to finish using the bathroom.
Maybe I can stand up straight, or reach for something, maybe not.
Maybe if I try to lay comfortably I won’t end up with limbs that won’t quite settle all the way because the muscles don’t want to relax.
Any muscle anywhere can decide it wants to start doing it’s own little Morse code impersonation, including ones controlling things like vision, ear pressure, or random areas you don’t really consciously control.
Maybe I can see clearly, maybe it’s double vision, maybe one eye won’t follow the other eye, maybe it’s severe tunnel vision.
Maybe I can take a full breath, maybe the muscles over my ribs decided they want to cramp up if I take more than a small one.
Maybe I can hold onto something, and my hand will decide wether it wants to randomly open or just close itself up and have to be pried back open.
Maybe I feel mostly normal, or maybe someone is beating my head and multiple other areas with crowbars and ice picks while I go about my day.
Maybe I can eat something right now, or maybe one mini pretzel will trigger several hours of severe cramping and diarrhea.
Maybe when I blink an eyelid will get stuck in the down position.
Maybe I’ll yawn and my tongue and jaw muscles will all cramp and lock.
Maybe an eye will have a muscle cramp that feels like a fish hook tearing the eye out of your skull while the eye points in a random direction.
Maybe when something touches my skin I’ll feel like it’s still there for minutes.
Maybe I know which way is up but mostly likely I don’t have a clue.
Maybe a bit too much ambient noise starts causing severe headaches trying to sort out the stuff I need to hear.
Maybe I can talk well or maybe I take it easy and use small words that don’t require much vocal, uh, dexterity?
Maybe I heard what you said but there’s a 5-10 second delay before I actually know what the words mean.
Maybe I’ve forgotten how clocks work for a few seconds.
But mostly I work and move about slowly while random things twitch, glitch, ache, cramp, sting, stab…
And meanwhile I smile and look happy and give the kids a good day and lots of places to go so I can just sit for a bit and do some breathing and positive meditation until everyone’s tucked into bed for the night.
Then I can relax on the recliner with a good strong drink and cry about whatever hurt today while I think about how nice not waking up tomorrow would be and worry about the kids needing me.
Then I get up the next day and do it all over again.
Dang that sounds rough to deal with. I feel that way sometimes about the kids needing me and finding it hard to keep going, and that’s with just your typical middle age aches and hormone stuff. This is like next level body betrayal.
Omg. I’m so sorry… Muscular dystrophy, maybe? Or some weird variation of Parkinsons?
Spent 6 months arranging visits and tests with every type of specialist available for anything I had issues with.
They said the individual parts appear to be working fine. No genetic, auto immune, blood or other disorders could be found.
Neurologist decided their isn’t anything to look for because I’ve had an MRI before and it was clean/clear.
Only guess is a severe childhood head injury, 12+ foot fall onto concrete. The recent MRI said I chipped some neck vertebrate so long ago the bone fragments were gone. Might explain the severe childhood migraines too.