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The closest thing to torture I've experienced was when I was getting my nervous systems tested when my arms went weak and numb for no good reason, I lost my voice almost completely, had trouble swallowing, my whole body was weak and limp
All kinds of doctors had gotten all kinds of bloodtests done, probed be all over, done testing on my mental skills. The neurologist couldn't think of anything it could obviously be, and finally put me in a test where they zap my nerves directly, and see how my muscles respond
The technician had these acupuncture type needles hooked up to electricity, and some kind of sensors that recorded muscle activity. She's find the important big muscles in my legs, feet, arms, probe with her needles and twist them around in my flesh and find the nerves directly
It's not a great feeling when your muscles and nerves are being gouged like that... but it's even worse when after the initial probing zaps she goes "ok! I found it! We'll do a hundred zaps on each muscle and record it"
Now, I've learned to be VERY STOIC with pain. So I was like "ughghahahahah.... ok :) I Shall Endure." I'll take it, I'll lie here on the operating table and twitch like Galvani's frogs. It's... interesting. Bodies are interesting. This is science. It's... cool.... HURTS but ok...
Due to my Ehlers-Danlos my repetitive muscle movements are... a problem. Every time I've tested for grip strength, my first result is really good, second one is average, then poor, then REALLY poor, then I can't pick up the measurement device. Gotta recover.
6-10 big repetitions are an issue. 100 forced involuntary electricity driven repetitions... my muscles started tearing up. "I JUST GOTTA ENDURE IT FOR THE RESULTS" I kept thinking as we went over the big muscles of my body, electrically tenderizing my meat all over.
When we were done with those, I got a moment to rest as the technician looked trough the data, highlighted some results for later, conculted a neurologist. Ah.. It's over...
And then she told me we're halfway done, we're doing my face next :)
And then she told me we're halfway done, we're doing my face next :)
ahahahahaa.... I see... my face next.... ok :))))))
And she proceeded to do the same process with like 15 distinct muscles in my face, gouging under my skin with the needle tips even more forcefully, it felt, and getting much worse results and having to redo many over and over
And she proceeded to do the same process with like 15 distinct muscles in my face, gouging under my skin with the needle tips even more forcefully, it felt, and getting much worse results and having to redo many over and over
Having your arms and legs twitch involuntarily feels weird, but having your face contort with needles inside it feels COMPLETELY INSANE. And hurts. The whole test couldn't have taken more than 40-90 minutes but I was there forever.
Something she did damaged a nerve going from my scalp towards my eyebrow, and even two years later that area is a bit messed up, doesn't move like it used to and I get weird mixed up sensory effects. Oops!
The worst thing is we got no conclusive evidence of anything.
"It's not MS... or any other neurological disease we know about. It's also NOT AT ALL NORMAL. We could book you another appointment in a month to--"
No :)
"Ah but we could get to the bottom of it and--"
NO 8D
"It's not MS... or any other neurological disease we know about. It's also NOT AT ALL NORMAL. We could book you another appointment in a month to--"
No :)
"Ah but we could get to the bottom of it and--"
NO 8D
That was the point where I decided "Ok. So my body is fucked up. Do I really need to know why and how? Do I need any more medical professionals draining my blood and scanning and probing and torturing me? I know my limitations. There's no cure. I'm done with doctors for now."
I recall thinking "I'm done with being ill now", decided I do not want to be looking for medical permission to drop out of the world, don't want to nerf myself beyond personal responsibility by having hysterical psychosomatic issues, don't want to subsist on disability checks.
I cancelled all further medical tests (and at that stage of life I had had like three big ones per month for several months at that point, constantly consulting someone about something), finished my school, got my top surgery done and fiercely healed from that as fast as possible
Ever since I've only booked a doctor's appointment for a few colds lasting over a week, when I had my stitches removed after top surgery, and the time I tore something in my knee. And refused surgery, knowing that's insane, and just rehabbed and regrew it myself.
I won't say "fuck doctors they know nothing" because some medical care is VITAL.
But I WILL say "fuck the medical system for how weird rare cases get thrown around and never looked at holistically and for failures of good bedside manner and for causing unnecessary damage"
But I WILL say "fuck the medical system for how weird rare cases get thrown around and never looked at holistically and for failures of good bedside manner and for causing unnecessary damage"
I no longer have most of the issues I had during my medical problem case years, but only because I made it my responsibility to take good care of my body. I no longer press on to have flashier symptoms to show to doctors so they KNOW IT IS REAL. That's a form of self-harm.
"Instead of taking a bus I will walk 4 miles on my fucked up feet to DEMONSTRATE to the physiotherapist just how fucked up it gets so he UNDERSTANDS and will know how to help stop this from happening"
You know what? How about you start by not walking that much?
You know what? How about you start by not walking that much?
"I get autoimmune symptoms when I eat nightshades, I'll eat a lot of them before I see the doctor to show him how severe my reactions are so he will not dismiss my concerns and validates me"
How about you don't eat stuff you're allergic to, if you want to be respected?
How about you don't eat stuff you're allergic to, if you want to be respected?
A lot of the time my weird body is only a problem when I don't listen to it & refuse to respect its signals. I don't need to fix or change it. I just need to go at the right pace & do right things the right way. It WILL TELL ME. I don't need a hundred tests to make vague guesses.
I absolutely learned these bad strategies and attitudes from my mom who has a weird mix of disabilities, psychosomatic stuff, hypochondriac stuff bordering on Munchhausens, who always told me stuff like "Play up your symptoms so they take you seriously and refill prescriptions"
