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ghostofasecretary · 7 years

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so the pain feelings are probably the easiest and most grounded, let’s have those first

it really, really annoys me that i have chronic pain. i mean, yes, chronic pain is annoying, but i am annoyed at the specifics of my chronic pain because fibromyalgia is a...complicated diagnosis at best, one i am not sure really exists at worst, and one i would rather throw myself into a fire than get slapped with again.

(possibly do not read this if you are diagnosed with fibro, i think your pain exists and effects your life but i don’t quite think mine is and have Feelings about fibro as a diagnosis that i can’t assess and in this post i make some statements that may be distressing. if you’re sensitive to people dismissing pain, even if it’s their own pain, uh, maybe just skip this one)

i think the pain of other people i real and my own is not, sometimes, which is really stupid and i don’t agree with it, but there the thought is, being a thought.

legitimate vs illegitimate pain is one that is often framed through the lens of sexism and while that is probably reasonable, it also makes me curl into a little ball of dysphoria. i don’t want to think i was effected by sexism while i ran the medical gauntlet, and even if i was i don’t...ugh. sorry. no. i don’t want to.

fibro is basically the diagnosis for “we don’t know what’s wrong with you and you’re probably crazy and/or whiny and/or Don’t Real.” i’m not even sure it’s better than no diagnosis. also i am crazy, it’s on my chart, i don’t...i don’t want another thing that makes me more likely to be dismissed.

in my junior year of high school (well, from August to...April? stuff tapered off around the end of February) i had headaches that ranged from irritating to extremely distracting and mildly painful every single day. i say “mildly“ painful because i have had several severe migraines in my life, and while the aggregate suffering of daily aura and varying forms of pain in my temples may have been equal to the multiple days where i would have to be lying down in a dark room that was quiet as we could possibly make it, but even that didn’t quite help because my heartbeat was too loud, the daily experience was...not that bad. i also had some other symptoms that sucked!

these may have made the aggregate That Bad, idk. i was also pretty suicidal at this point, which kind of clouds my memories.

i was really nauseous pretty much constantly. i had aura pretty much constantly. i got diagnosed with chronic daily migraines, although they were atypical.

my hips and knees hurt a lot. my back hurt, my neck hurt, my shoulders hurt. sometimes i didn’t feel like i could walk well at all and i limped. i sat down often. my hands hurt and writing got painful for the first time. i was very tired.

i did some really stressful things in junior year that were made a lot worse by having headaches constantly and being tired and in miscellaneous pain and feeling like i was going to throw up. i had a really bad night one time where everything in my body was pounding and i ached and cramped and felt like i was on fire and also had a migraine i would class as a Real Migraine, complete with high-key pain and horribly present nausea and blackouts and floating dots. it was really hard.

i had a bunch of tests done re: headaches, including an EEG and an MRI. i asked for a full panel of bloodwork because i did not know what was happening and whether there was a cause. (fibro does not have a known cause, although it is sometimes speculated to be “stress” or “mental illness.” thanks, medicine.) there was no detectable underlying cause, but i did get some helpful medication after a lot of trial and error and several months of waiting. by several months i mean about half a year, but, well. what can you do.

(also, i had SO MUCH ANXIETY about diagnosis and i both was terrified of having RA or lupus or cancer or something identifiable and i desperately wanted something fixable. i also had FUN FUN FUN ANXIETY about being a Bad Patient, about whether asking for bloodwork and being upset over not having an underlying cause made me look like a hypochondriac, about whether the fact that i didn’t exercise as much meant i was Destroying My Health even though exercise hurt like a motherfucker and made every part of daily life difficult, etc, etc)

senior year was much less bad, pain wise.

headache meds really helped my other symptoms! yay! it’s also possible i developed a better pain tolerance*? i did have noticeable and distracting pain while typing during senior year but a carpal tunnel diagnosis is not terribly useful and trying to get diagnosed and not getting anything would probably have crushed me.

going to a chiropractor was moderately helpful but also painful, so...eh?

exercise was really, really not. it’s supposed to be, although the studies used to support that are kind of sketchy, but it was not helpful. it might be helpful now but i would not bet on it.

(one time in junior year i tried to stand up and pace around for an hour, to see if i could do it. i wound up having to lie down in bed for four hours. lying down because of Pain sucks and it feels so stupid and shitty and boring, and i knew i probably shouldn’t have stood for that long while it was so uncomfortable but i wanted to see if i could. i could, barely, but it was not worth it. and it’s so stupid, i feel so petty, i stand up for seven hours every day now and i don’t hurt that much, why did i...? surely it couldn’t have been that bad, surely i was making it up.)

sleeping more did help a little.

* i don’t feel like i developed a better pain tolerance but it might be worth noting two things.

one, after a while i got incredibly fed up with noticing my pain and all the stuff on the net about fibro being psychosomatic and not having any reason to feel bad aside from my headaches which also didn’t have a Real ReasonTM, i decided to ignore pain. pain? what’s that? i don’t have that. banging my elbow makes me ache for days? lol, no it doesn’t. it...i mean, i think it helped. not thinking about my pain All The Time defnitely helped, although the Denial might be less than great.

two, even though i really do feel like i have a shit pain tolerance my feet were literally bleeding because of my shoes in DC and i did not take any action about this until K and R told me to. it hurt, but not, like, a lot.

possibly i have a better pain tolerance.

...

anyway. recently during my work as a barista, my hands and wrists and forearms have been quite annoying. my wrists keep sparking when i pick up milk cartons or shake whip cream and i have to do those things many times during the course of a day. it hurts to close my hands and they’re usually very stiff but probably not clinically stiff. my tendons seem...unhappy...but fuck if i know. i sleep in wrists braces every night and have for years, i ice my hands and wrists at least once a week, typing is still hella painful and i don’t draw or sew very much anymore and i cannot shake the conviction that there is Nothing To Be Done and also that i am feeling my nerves dying every day. which. uh. not great.

(and also - my ankles hurt all the time, i stand up for seven hours a day, what do you expect? my back hurts, so what, everyone’s back hurts. sometimes my knee wrenches but idk, man, it does that.)

i can’t tell what’s a reasonable, measured reaction, what’s abject denial, and what’s overwhelming anxiety and desperation to have anything that isn’t The Fake Special Snowflake Disease For Special Snowflake People.

according to the Mayo Clinic, “See your doctor if you have persistent signs and symptoms suggestive of carpal tunnel syndrome that interfere with your normal activities and sleep patterns. Permanent nerve and muscle damage can occur without treatment.” uhhhhhhhh

tingling and numbness have occurred for the past two and a half years, although they’ve gotten much worse recently. i haven’t been woken up because of it, but, like. if i woke up every time i was in pain i would be awake a lot. weakness hasn’t really happened yet. pain is, y’know, kind of a thing.

i’m vaguely worried that i could have more things ala tendinitis but no way am i going to think about that too hard.

options:

continue ignoring everything. this one looks very stupid but i am tempted. if i think i need carpal release surgery i could try to get it then, otherwise i’m pretty much doing okay on prevention and am doing decently at ergonomic support. if i get told to ice my wrists or something i will scream

go to a doctor. a diagnosis would probably make me feel better but also what if i don’t get one, and there isn’t much to be done anyway unless i need surgery which i do not think i do. if i have tendinitis i might get a steroid shot, but really, i don’t think i do? i don’t want to think about it, i am so tired of thinking about my shit body, i don’t want to

go to the chiropractor. this looks like a nice middle balance and i could ask about carpal tunnel in a less serious environment and it might help, but uggggh, why can’t i just...continue ignoring everything. “permanent nerve and muscle damage” sounds serious but not being able to stand without being in a fuckload of pain sounded serious to me in junior year and here we are, with awesome headache meds and a dubiously effective pain tolerance.

at what point does pain interfere with my life? when i notice it? when i start dropping things? when i can’t hold a pencil? idk, man. i d fucking k

oh, yeah, and another thing, my headaches have been..sort of a thing lately. at this point i’m going to have to get a freakin anti-headache earring like it’s a sigil to ward off a demon and/or i will have to get botox shots every three months like a soccer mom desperately sneaking in to the doctor’s office to make herself feel just a tiny bit better about her miserable life and wrinkles, because obviously a 40 year old showing signs of age is A Sin Against Beauty And An Affront To Nature

(note the increasingly bitter and jaded tone of this post. do i sound hysterical yet)

pain is very stupid and i am SO ANNOYED

....probably i should schedule a chiropractor appointment. i shall pester my mom about that now

#emotional sorting #whining #surprise: chronic pain!#ugh that's a lot of feelings #this was supposed to be the /easy/ post #i am a parody of myself #please do not armchair diagnose me #hugs are nice

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