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untonugganJust thinking about this most excellent pain scale that alexseanchai linked to.
Talking about pain is weird and hard because people experience pain differently. There is no way for me to know if the blue I see is the blue you see. And there is definitely no way for me to know if your period cramps are the same as my period cramps.
***
Pain is also weird because I spend so much time trying not to talk about it. I've learned that I have to talk about it or kind of explode inside and it gets worse, but most able-bodied people don't want to know about chronic pain because it makes them intensely uncomfortable. You're in pain right now? You're in pain every day? You just live with it? People live like that I might have to one day too? Even before I get old and am in a nursing home? Like I could in my twenties omg!
I had a friend -- she is very very active in her mid 60s and gardens and eats stuff with dirt on her hands and doesn't get sick which is just maddening at times -- who got acute Lyme disease and in the midst of all the muscle aches gasped, "Is this what it's like for you all the time?" and I just kind of shrugged and generally she has tried to be much more accommodating since then, though sometimes she forgets still because I think your brain just tries to make you forget what that kind of pain is like if it can. Like grief.
Anyway, I think that's part of why socializing with a disability like chronic pain is weird -- it's like your very existence reminds people that the world is unstable and existentialism and if you're not Being Inspirational, often experiences of Extracting More Medical Records Why Is That So Hard are blissfully foreign and the idea of that suddenly becoming an everyday reality is scary and so people distance themselves without realizing that's what they're doing.
Also it is hard to hang out with other spoonies in person because we're all conserving spoons and when you do make plans it's like "oh crap I have an infection I don't want to share, let's reschedule." At least the internet exists though omg.
***
I mean let's be honest, I love me some Jane Austen but her depictions of both the Bates' and Mrs. Bennetts' nerves etc are super super shitty and ableist and gross. And apparently her mom and sisters had unexplained medical stuff she thought was attention seeking but looking back could easily have been something like fibromyalgia or one of those doctors-dismiss-as-women-being-hysterical-complaints we still don't know much about.
***
But chronic pain is also hard because especially with medical professionals they seem to want pain to be monolithic.
I never quite know how to answer their questions about pain.
Like they always want to know if I'm in "any pain" and I'm like, "Well yes, but I have chronic pain and it's [no more than normal / everything is normal except for this one issue I came in about]."
There's no spot in the computer form for "normal pain is normal but the new pain is an 8" and it seems like people want me to just "answer the question" when I could really write some sort of Epic Poem about the pain in my body except I don't think I'd want to.
They also want to know "which parts of my body hurt" and it's like, "Well all of it" and then they want details and I'm like "Well usually it's these bits, but honestly on bad days my scalp hurts and the worst day my shins hurt" and then I get all self conscious like if I give them too many details they think I have thought about it too much or something and I really am a drug seeker or OH NO am I using too many medical words or questioning their authority they will think I am a "difficult patient."
***
Also my partner is great and amazing and has lived with me and my body being surprising and unique and All the 0.001% of Unexpected Side Effects for years and she's really great about thinking about accommodations and reminding me to take meds without nagging and everything.
So it was kind of surprising to me that the other week she did not know that nerve pain is different from muscle pain is different from joint pain, and I am so familiar with all of them that I can just tell which is which.
For her it's "wait nerve pain is a separate feeling? How can you tell?" For me it's "You have so little experience with pain you aren't familiar with the language of how it feels in your body? How can you not instantly know?"
***
The first thing I feel when I wake up in the morning is usually pain. Well, that or a cat tongue or maybe hungry eyes boring into my soul. This may be why I enjoy the cat's wake-ups, actually, even at odd inhumane hours, because even sharp cat nails are way better than OH GOD MY LEGS BURN TODAY. NOPE. I refuse today.
And even to go feed hungry cats I have to go through this mental dance of convincing myself that yes, once I get out of bed my body will hurt but it will eventually feel less bad after 5-10 minutes. probably. they usually do unless it's a really bad day, and then we have coping skills and we need to get the meds on board anyway if it's one of those days and also do stretching or whatnot. and yes we can do this. Tea? Will tea help? We can face the initial worse pain come on yes we can put our feet on the floor even though it's going to sting like bejeesus oh god.
So yeah, the cats do a really important job because otherwise there would definitely be a lot more "I cannot face moving" mornings and the not-moving actually does not reduce the pain nor make the eventual need to put my feet on the floor any less painful.
***
Which is why I just want to laugh bitterly at people (lbr, mostly doctors) who think I am exaggerating whatever pain I'm in their office for because I want "attention" or because I'm "hypersensitive to pain" or because I'm a "drug seeker" or something.
LET'S TALK FRANKLY for a moment, fancy doctor degree person. I had to get out of bed to get to you. Also shower, and put on clothes, and leave the cocoon of my Netflix-blanket-cats-and-knitting-nest, and I could have done all of that for something ACTUALLY FUN. I hate doctor rigamarole and it took a lot of energy to get out of my house (nay, even find you and get an appointment and fill in your paperwork!), and the last thing I want to do is blow that energy stuck in a doctor's office when I could be knitting with friends orstalking friendly dogs at a dog park spending time outside or doing something fun. If I have made the effort to see you and I say THE PAIN IS BAD, and it's not the usual sort of pain, it is BAD and also new/weird. Trust me. I know.
***
Pain and I are constant companions. I've accepted the pain is just always going to be there to some degree, and we're cool. I can deal with that. But if I came to your ER or office or whatnot, please believe me when I say I'd much rather be at knit night than trying to list numbers on a damn pain scale.
I choose my outfits based on which clothes are likely to exacerbate my pain. Is this sweater too heavy? Will these shoes provide the right support or be too tight or will I twist my ankle in this or do I want something that slips off easily? Am I likely to need something to keep my joints warm or is a hot flashes day?
I have had one pain free day in the past decade and it was utter bliss. (It was also early on in chronic illness land and I was a fool and wasted it CLEANING. I don't even know what I would do now but it would probably involve a road trip and super delicious food and a bookstore.) I learned to ride a bike in pain. I've gone hiking in pain. I go on 12 hour road trips in pain. I also spend a lot of time taking hot baths and watching Netflix in pain so I can do those other things, or sometimes, just to survive from one moment to the next. Neither accomplishment is greater than the other and the Protestant Work Ethic is super toxic and needs to die a horrible death and be used as a warning to future generations of what not to do.
***
Medical model of disability: Would I like no pain? ABSOLUTELY. Right now the meds really suck though, and most are only partway effective. I would also like to be able to read books and that is not something most of the pain meds let me do and books are super great yes.
I think the social disability model of pain, though, is that we don't have a way of talking about chronic pain, and it becomes really isolating. There's no easy way to ask for accommodations for spoon conservation without the burden being all on me and I'm the one "making it weird." There's no easy way for me to get out and socialize with actual people, let alone other spoonies. And there are few spaces outside doctors offices where I can talk about my pain, which just means it gets super medicalized and then I just want to RAGE about it because people shit on how my perceptions must not be real and that's basically gaslighting.
There was just some research on how loneliness can affect life span, and be just as toxic as say smoking cigarettes. And living chronic pain is lonely when you have no tribe with which to talk about it, or your tribe of origin has no way of talking about it with you.
***
So I have a lot of thoughts about pain and right now I actually need to get ready for an MRA of my shoulder to see if my extra-special extra cervical rib is compressing the veins going into my arms, which is one of a series of tests I'm probably going to finally have about the pain in my shoulders that's been blown off for at least 15 years.
Probably I could fill volumes but I'll leave this here for now as an open post, and feel free to cross link in dreamwidth (but ask before tumblr etc for the moment because different type of commenter) as I think I'm not the only one who has many thoughts and a need to talk about chronic pain not just in the medical-ese of the fucking pain scale or in a list of words like "stabbing" and "throbbing" and other things that look like they could come from a sexyfuntimes fic but are not, actually, that sexyfuntimes in this case.
alexseanchai linked to.Talking about pain is weird and hard because people experience pain differently. There is no way for me to know if the blue I see is the blue you see. And there is definitely no way for me to know if your period cramps are the same as my period cramps.
***
Pain is also weird because I spend so much time trying not to talk about it. I've learned that I have to talk about it or kind of explode inside and it gets worse, but most able-bodied people don't want to know about chronic pain because it makes them intensely uncomfortable. You're in pain right now? You're in pain every day? You just live with it? People live like that I might have to one day too? Even before I get old and am in a nursing home? Like I could in my twenties omg!
I had a friend -- she is very very active in her mid 60s and gardens and eats stuff with dirt on her hands and doesn't get sick which is just maddening at times -- who got acute Lyme disease and in the midst of all the muscle aches gasped, "Is this what it's like for you all the time?" and I just kind of shrugged and generally she has tried to be much more accommodating since then, though sometimes she forgets still because I think your brain just tries to make you forget what that kind of pain is like if it can. Like grief.
Anyway, I think that's part of why socializing with a disability like chronic pain is weird -- it's like your very existence reminds people that the world is unstable and existentialism and if you're not Being Inspirational, often experiences of Extracting More Medical Records Why Is That So Hard are blissfully foreign and the idea of that suddenly becoming an everyday reality is scary and so people distance themselves without realizing that's what they're doing.
Also it is hard to hang out with other spoonies in person because we're all conserving spoons and when you do make plans it's like "oh crap I have an infection I don't want to share, let's reschedule." At least the internet exists though omg.
***
I mean let's be honest, I love me some Jane Austen but her depictions of both the Bates' and Mrs. Bennetts' nerves etc are super super shitty and ableist and gross. And apparently her mom and sisters had unexplained medical stuff she thought was attention seeking but looking back could easily have been something like fibromyalgia or one of those doctors-dismiss-as-women-being-hysterical-complaints we still don't know much about.
***
But chronic pain is also hard because especially with medical professionals they seem to want pain to be monolithic.
I never quite know how to answer their questions about pain.
Like they always want to know if I'm in "any pain" and I'm like, "Well yes, but I have chronic pain and it's [no more than normal / everything is normal except for this one issue I came in about]."
There's no spot in the computer form for "normal pain is normal but the new pain is an 8" and it seems like people want me to just "answer the question" when I could really write some sort of Epic Poem about the pain in my body except I don't think I'd want to.
They also want to know "which parts of my body hurt" and it's like, "Well all of it" and then they want details and I'm like "Well usually it's these bits, but honestly on bad days my scalp hurts and the worst day my shins hurt" and then I get all self conscious like if I give them too many details they think I have thought about it too much or something and I really am a drug seeker or OH NO am I using too many medical words or questioning their authority they will think I am a "difficult patient."
***
Also my partner is great and amazing and has lived with me and my body being surprising and unique and All the 0.001% of Unexpected Side Effects for years and she's really great about thinking about accommodations and reminding me to take meds without nagging and everything.
So it was kind of surprising to me that the other week she did not know that nerve pain is different from muscle pain is different from joint pain, and I am so familiar with all of them that I can just tell which is which.
For her it's "wait nerve pain is a separate feeling? How can you tell?" For me it's "You have so little experience with pain you aren't familiar with the language of how it feels in your body? How can you not instantly know?"
***
The first thing I feel when I wake up in the morning is usually pain. Well, that or a cat tongue or maybe hungry eyes boring into my soul. This may be why I enjoy the cat's wake-ups, actually, even at odd inhumane hours, because even sharp cat nails are way better than OH GOD MY LEGS BURN TODAY. NOPE. I refuse today.
And even to go feed hungry cats I have to go through this mental dance of convincing myself that yes, once I get out of bed my body will hurt but it will eventually feel less bad after 5-10 minutes. probably. they usually do unless it's a really bad day, and then we have coping skills and we need to get the meds on board anyway if it's one of those days and also do stretching or whatnot. and yes we can do this. Tea? Will tea help? We can face the initial worse pain come on yes we can put our feet on the floor even though it's going to sting like bejeesus oh god.
So yeah, the cats do a really important job because otherwise there would definitely be a lot more "I cannot face moving" mornings and the not-moving actually does not reduce the pain nor make the eventual need to put my feet on the floor any less painful.
***
Which is why I just want to laugh bitterly at people (lbr, mostly doctors) who think I am exaggerating whatever pain I'm in their office for because I want "attention" or because I'm "hypersensitive to pain" or because I'm a "drug seeker" or something.
LET'S TALK FRANKLY for a moment, fancy doctor degree person. I had to get out of bed to get to you. Also shower, and put on clothes, and leave the cocoon of my Netflix-blanket-cats-and-knitting-nest, and I could have done all of that for something ACTUALLY FUN. I hate doctor rigamarole and it took a lot of energy to get out of my house (nay, even find you and get an appointment and fill in your paperwork!), and the last thing I want to do is blow that energy stuck in a doctor's office when I could be knitting with friends or
***
Pain and I are constant companions. I've accepted the pain is just always going to be there to some degree, and we're cool. I can deal with that. But if I came to your ER or office or whatnot, please believe me when I say I'd much rather be at knit night than trying to list numbers on a damn pain scale.
I choose my outfits based on which clothes are likely to exacerbate my pain. Is this sweater too heavy? Will these shoes provide the right support or be too tight or will I twist my ankle in this or do I want something that slips off easily? Am I likely to need something to keep my joints warm or is a hot flashes day?
I have had one pain free day in the past decade and it was utter bliss. (It was also early on in chronic illness land and I was a fool and wasted it CLEANING. I don't even know what I would do now but it would probably involve a road trip and super delicious food and a bookstore.) I learned to ride a bike in pain. I've gone hiking in pain. I go on 12 hour road trips in pain. I also spend a lot of time taking hot baths and watching Netflix in pain so I can do those other things, or sometimes, just to survive from one moment to the next. Neither accomplishment is greater than the other and the Protestant Work Ethic is super toxic and needs to die a horrible death and be used as a warning to future generations of what not to do.
***
Medical model of disability: Would I like no pain? ABSOLUTELY. Right now the meds really suck though, and most are only partway effective. I would also like to be able to read books and that is not something most of the pain meds let me do and books are super great yes.
I think the social disability model of pain, though, is that we don't have a way of talking about chronic pain, and it becomes really isolating. There's no easy way to ask for accommodations for spoon conservation without the burden being all on me and I'm the one "making it weird." There's no easy way for me to get out and socialize with actual people, let alone other spoonies. And there are few spaces outside doctors offices where I can talk about my pain, which just means it gets super medicalized and then I just want to RAGE about it because people shit on how my perceptions must not be real and that's basically gaslighting.
There was just some research on how loneliness can affect life span, and be just as toxic as say smoking cigarettes. And living chronic pain is lonely when you have no tribe with which to talk about it, or your tribe of origin has no way of talking about it with you.
***
So I have a lot of thoughts about pain and right now I actually need to get ready for an MRA of my shoulder to see if my extra-special extra cervical rib is compressing the veins going into my arms, which is one of a series of tests I'm probably going to finally have about the pain in my shoulders that's been blown off for at least 15 years.
Probably I could fill volumes but I'll leave this here for now as an open post, and feel free to cross link in dreamwidth (but ask before tumblr etc for the moment because different type of commenter) as I think I'm not the only one who has many thoughts and a need to talk about chronic pain not just in the medical-ese of the fucking pain scale or in a list of words like "stabbing" and "throbbing" and other things that look like they could come from a sexyfuntimes fic but are not, actually, that sexyfuntimes in this case.
