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just over a year ago i finally found an answer to the pain i have to live with. not a cure, but at least a why. i thought that would make things easier, to know this isn't all in my head. i thought that once they knew *what* it was they could just fix it. an easy fix once there was an answer. hah. things have been anything but easy, as it seems like it knows it was found out and now it's trying to rack up all the misery it can. no cure, only treatment. and shoddy excuses for treatment at that.
i think of all the people in the assortment of pain management clinics i've passed through over the years - the people who gasp quite audibly and moan only when people are watching, and it makes me ashamed to have this illness, or any pain inducing disease for that matter. i think of people in the waiting rooms who speak as loud as possible about how much pain they're in. and, you know what? maybe they really are, but those of us that don't *get* a break from it learn that bitching just makes it worse. the last thing you want to do is remind yourself of the hell you live in.
i think of people who tell me i have no idea what kind of pain they're in. my boss for one - he pulled a muscle in his back last week and has been ever since whining and ignoring every suggestion i have for him to help. "you have no idea how bad this hurts" he says, knowing full well that i'm sick. i realize that pain is subjective, but don't for one second think i don't understand. in fact, i think i *over* understand, hence offering all the different treatment methods i've had some sort of success with no matter how miniscule. my boss - he'll get better, and he rests easy with the knowledge that this is a temporary ailment, the muscle will heal, things will become normal again. me? i will only ever get worse. i don't have a pulled muscle, i have goddamned ankylosing spondylitis. if the drugs they treat you with won't kill you the pain and joint destruction will. you don't actually die from AS, you just wish you could.
i've been living through one hell of a flare up for about a month now. certainly the longest to date, and at some points the most severe. i would be lying if i said i'd not thought of taking my life just to end this. sometimes i think that if it wouldn't totally destroy my father and my husband i might just go through with it. but, the fact remains that it would kill them alongside of me. how christlike - suffering in order to preserve others' happiness. but whatever.
my life usually goes something like this during a flare-up:
waking up i lay in bed, afraid to move because i just am not ready to deal with the burning sensation my joints will produce and the spasms my muscles will inevitably go into. i check my clock to see just how long i have until i have to be to work so i can lie still just a little bit longer even though i know lying still is what is making this happen. i toy with calling off work, i toy with flat out quitting my job altogether to just fucking rot. i dream of going on disability, but my salary is far more than i'll ever bring in being disabled, though several doctors have pleaded with me to at least consider it.
by the time i finally start the descent out of my bed my joint popping has awaken my husband, at least enough for him to make some odd noise and roll over. i brace myself against the bedroom wall and hobble to the bathroom, each step wishing i could just go back to bed. my sense of duty pushes me forward. i wish over and over again i could just take a pain killer, but i cannot function properly in a work environment on such heavy narcotics. i also know that if i partake too often they won't work as well, if at all. i just wish the pain would stop.
all of this before i even make it to the bathroom.
my husband has made it his duty to make sure my cane is by my side of the bed. i still can't figure out why he would choose a life like this just to be with me. he really is a saint.
i make it to work and i'm usually still un-freezing my joints from sleeping. my boss begins to tell me the millions of things i do wrong and i dream of shooting him. i miss my old boss and how understanding he always was with me. i struggle with every day things - opening bottles, flipping through paperwork. anything that requires any fine motor skills is a challenge. crouching down to get games or to put games away, fuck, even answering the phone hurts. but i make it through the day, sometimes barely. by the time i get home its all i can do to just sit on the couch with my husband and watch movies. sometimes even video games hurt.
my days off i usually sleep all but maybe 5 hours of. my body can't handle what i'm putting it through but i'm just too damn stubborn to do anything else. hard work is all i fucking know. my husband will lovingly wake me up throughout the day to see if i need anything, to make sure i eat, to hold me as i sob myself back to sleep. he'll rub the muscles in my legs and arms to keep them from spasming and try desperately to keep me comfortable, putting pillows under my knees and brushing my hair out of my face. i see in his expression that he just wishes it would end, that i could be okay long enough to enjoy life again. i cannot say i disagree.
i turn down many invitations to hang out because i'm just too damn tired. i can't hang out with anyone further than 20 minutes away because i can't handle the car ride. people think i don't like them because of these two factors and i'm just too fucking tired of explaining what's wrong over and over again to sway their thoughts. i miss social interaction but it just takes so fucking much out of me. i would actually be dreading my birthday party thursday if i didn't know i had pain killers to help me survive. i've purposefully not been taking them so that they'll work long enough for me to host a party.
this is what my life has become over the past month, and i've seen no signs of this flare up letting up. i'm beginning to wonder if this is just my new state of being. if so, i cannot guarantee i'll let it dredge on too long. no one should have to live like this. no one.
i think of all the people in the assortment of pain management clinics i've passed through over the years - the people who gasp quite audibly and moan only when people are watching, and it makes me ashamed to have this illness, or any pain inducing disease for that matter. i think of people in the waiting rooms who speak as loud as possible about how much pain they're in. and, you know what? maybe they really are, but those of us that don't *get* a break from it learn that bitching just makes it worse. the last thing you want to do is remind yourself of the hell you live in.
i think of people who tell me i have no idea what kind of pain they're in. my boss for one - he pulled a muscle in his back last week and has been ever since whining and ignoring every suggestion i have for him to help. "you have no idea how bad this hurts" he says, knowing full well that i'm sick. i realize that pain is subjective, but don't for one second think i don't understand. in fact, i think i *over* understand, hence offering all the different treatment methods i've had some sort of success with no matter how miniscule. my boss - he'll get better, and he rests easy with the knowledge that this is a temporary ailment, the muscle will heal, things will become normal again. me? i will only ever get worse. i don't have a pulled muscle, i have goddamned ankylosing spondylitis. if the drugs they treat you with won't kill you the pain and joint destruction will. you don't actually die from AS, you just wish you could.
i've been living through one hell of a flare up for about a month now. certainly the longest to date, and at some points the most severe. i would be lying if i said i'd not thought of taking my life just to end this. sometimes i think that if it wouldn't totally destroy my father and my husband i might just go through with it. but, the fact remains that it would kill them alongside of me. how christlike - suffering in order to preserve others' happiness. but whatever.
my life usually goes something like this during a flare-up:
waking up i lay in bed, afraid to move because i just am not ready to deal with the burning sensation my joints will produce and the spasms my muscles will inevitably go into. i check my clock to see just how long i have until i have to be to work so i can lie still just a little bit longer even though i know lying still is what is making this happen. i toy with calling off work, i toy with flat out quitting my job altogether to just fucking rot. i dream of going on disability, but my salary is far more than i'll ever bring in being disabled, though several doctors have pleaded with me to at least consider it.
by the time i finally start the descent out of my bed my joint popping has awaken my husband, at least enough for him to make some odd noise and roll over. i brace myself against the bedroom wall and hobble to the bathroom, each step wishing i could just go back to bed. my sense of duty pushes me forward. i wish over and over again i could just take a pain killer, but i cannot function properly in a work environment on such heavy narcotics. i also know that if i partake too often they won't work as well, if at all. i just wish the pain would stop.
all of this before i even make it to the bathroom.
my husband has made it his duty to make sure my cane is by my side of the bed. i still can't figure out why he would choose a life like this just to be with me. he really is a saint.
i make it to work and i'm usually still un-freezing my joints from sleeping. my boss begins to tell me the millions of things i do wrong and i dream of shooting him. i miss my old boss and how understanding he always was with me. i struggle with every day things - opening bottles, flipping through paperwork. anything that requires any fine motor skills is a challenge. crouching down to get games or to put games away, fuck, even answering the phone hurts. but i make it through the day, sometimes barely. by the time i get home its all i can do to just sit on the couch with my husband and watch movies. sometimes even video games hurt.
my days off i usually sleep all but maybe 5 hours of. my body can't handle what i'm putting it through but i'm just too damn stubborn to do anything else. hard work is all i fucking know. my husband will lovingly wake me up throughout the day to see if i need anything, to make sure i eat, to hold me as i sob myself back to sleep. he'll rub the muscles in my legs and arms to keep them from spasming and try desperately to keep me comfortable, putting pillows under my knees and brushing my hair out of my face. i see in his expression that he just wishes it would end, that i could be okay long enough to enjoy life again. i cannot say i disagree.
i turn down many invitations to hang out because i'm just too damn tired. i can't hang out with anyone further than 20 minutes away because i can't handle the car ride. people think i don't like them because of these two factors and i'm just too fucking tired of explaining what's wrong over and over again to sway their thoughts. i miss social interaction but it just takes so fucking much out of me. i would actually be dreading my birthday party thursday if i didn't know i had pain killers to help me survive. i've purposefully not been taking them so that they'll work long enough for me to host a party.
this is what my life has become over the past month, and i've seen no signs of this flare up letting up. i'm beginning to wonder if this is just my new state of being. if so, i cannot guarantee i'll let it dredge on too long. no one should have to live like this. no one.