The Language of Pain is so much more than the numbers 1-10; I could write epic poetry

[untonuggan]

Just 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 or stalking 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.

Comments

[kittydesade]

It's more of an I-remember-reading than an actual scientific citation, but I remember reading somewhere that the brain does actively try to rewrite memories of severe or long-term pain, most likely in the same way that the brain tries to work around, rewrite, or otherwise initiate severe coping mechanisms for other kinds of trauma.

That said it wouldn't surprise me if this were an area not much studied because *flaps hand* as you say, doctors have a fucked up relationship with pain for a group of people who are supposed to make our biological lives better. Drug seeking behavior my ass. If we researched pain and its various actual causes more maybe we wouldn't constantly be giving people spackle when the problem's in the wiring.

Ahem. Sorry. You are obv much more conversant in this urge to throttle doctors than I. >.>

[alexseanchai]

I keep wondering what the hell the problem is with "drug-seeking behavior". Though it's probably the same thing as "don't give money to the homeless, they'll spend it on alcohol", which is bullshit straight through.

[kittydesade]

If "drug-seeking behavior" meant "here is a chemical addiction to a detrimental substance this person needs help" it'd be a useful label. Instead it overwhelmingly means "this person does not conform to what I think a Good Person (tm) should be" Grrrrr.

[alexseanchai]

Yuuuup. And there's no room in "Good Person (tm)" for people who actually need those meds to get away from pain. (Physical, mental, or otherwise.)

[kittydesade]

Which brings us back around to Protestant Work Ethic, Bootstraps, Walk It Off, and other things that make me wish for a time machine to go back and beat the stupid out of John Calvin.

[alexseanchai]

Nod. Lots of encoded assumptions in that crap, not least of which is "everyone has boots".

I'm not sure how the bootstraps metaphor is even supposed to work, anyway. One can only pull on one set of bootstraps--HOLY SHIT. I just googled 'bootstraps' to make sure I was thinking of the right part of the boot (I wasn't, I was thinking of the bootlaces), and compare #7 http://dictionary.reference.com/browse/bootstrap to the second paragraph of https://en.wikipedia.org/wiki/Bootstrapping and suddenly this shit makes sense. Because in this economy, who can improve their position through their own efforts? ONLY THE DAMNED LUCKY FEW.

[altamira16]

Those medications do not necessarily help in the long-term and can actively harm.

[lilacsigil]

Yeah, and (shock!) pain medication use is much higher in poorer people and rural people. I work in healthcare in a rural area and many people stay on increasing doses of pain medication because there's no other healthcare available: no pain clinics, long surgery waiting lists (for which you have to travel hours), physiotherapists and (mostly) dentists are not covered on the national health scheme. So "drug-seeking behaviour" is pretty logical, really!

A cancer centre was recently built locally and I wish it had been there when I had to travel for treatment! An hour each way rather than four would have been amazing.

[alexseanchai]

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.

Sing it.

we don't have a way of talking about chronic pain, and it becomes really isolating.

Hence this analogy. Which I'm sure you've seen before, but in case you have not.

[cxcvi]

Which I'm sure you've seen before, but in case you have not.

Or in case others hadn't seen it. I half feel ilke printing that out and sharing with my GP, because it's words that I don't have for how "as wonderful a $doctor as you are, this is why coming to see you sometimes feels like negative EV" I feel about the good parts of the medical system.

And then all of that all over again at some higher order of magnitude for chronic mental pain...

[pipisafoat]

I hadn't seen that analogy, that I remember! thanks for sharing.
(my firefighters say "we're pretty sure you actually started this fire yourself with your mind powers by thinking about something traumatic in your past that we've actually decided happened even though you don't think it did." they also say "just focus on what's not on fire and the fire will eventually go out" or "your fire doesn't flicker exactly the way i expected it to so i'm going to see if i can get another firefighter to come see you in a few months or years" or "here's this spray bottle. i'm not sure if it even has water in it. good luck!")

[indywind]

i have Thoughts and Feelings about pain ---or rather, body sensation, which is how I think of it-- which I am reluctant to talk about with spoonies as well as nonspoonies and people in therapeutic roles. Most people's perspectives just seem to be incompatible to mine, such that it will do us no good to try to bridge the gap, and misunderstanding may do some harm.

[pipisafoat]

I have some different feelings about pain. I'm chronically ill but not chronically in pain (most of the time; there are a couple things chronically wrong with me that sometimes cause pain for a month or two but i do not count it as chronic pain, just pain as a side effect from chronic illness). In fact, sometimes I think that it would be awesome to have pain because it can tell you things - like you said, you can feel the difference between nerve and muscle pains etc. That's helpful. Some days, my body is just like "btw you might want to visually check on things to make sure they still exist" instead of giving me any sensation. on days like that, pain could be very helpful.

but then I have the days where my body is like "oh uh something is going on somewhere soooooooooo instead of giving you useful information, I will give you vague pain feelings of every type I can imagine and let you awkwardly troubleshoot." it's muscle and joint and nerve pain all at once and it means I have fatigued a muscle or I need to pee or I'm dehydrated or I just got stabbed with a broadsword and it all feels the same. Once I manage to work out what it actually means, I can work with it the rest of the day or the week or until it changes up what the signals mean. (I once spent a week getting headaches when I needed to pee, but once I worked out that's what they meant, it was irritating but fine because I knew how to make them go away instantly. but that is not a normal treatment for headache, so if I ever complained about that to the doctor, well. they say "you are making it up." they say "we do not want to see you again" and they say "stop lying" and only one doctor in history has ever said "i believe you but i do not know why this is happening or how to fix it or even who to refer you to to get it fixed." and because it changes, they say even more I am making it up. "if you ALWAYS got a headache when you needed to pee" "things don't just change like that in real life" "you either have pain all the time or you never have pain" "learn to fake it better.")

I am glad for the people who have useful pain and can correctly interpret it. I can interpret the signals my brain gives me, but most of the time those signals are incorrect and I would so much rather have something consistent than this utter bullshit. (I am not at all trying to say "be grateful for your lot because mine is worse" (because that's utter bullshit) but I know this could be read that way when really I intend just to share my very different pain experience.)

[the_rck]

I end up lying about pain and just saying that only the thing I'm there for hurts. Doctors like poking me and asking if it hurts. Saying 'no more than I expect it to' really doesn't fit their script, so I just say no.

[rainbow]

i have had so many drs who've read my bloody chart, know i'm ana to the entire opioid family, and tell me that the pain must not be that bad if i'm not willing to risk death via opioid pain meds. gits.

i really prefer the honest ones who ask "why are you here when you know all i can offer you is meds you can't take?" -- honesty wins even if it isn't a solution. if there IS no solution, i want the honesty of being reminded of that.

also ime, far too many drs who are supposedly up on chronic pain issues are absolutely clueless about how severe chronic, untreatable pain, or that "new 10" is a thing.

my literal autistic brain is all o.O at the phrase "drug seeking behaviour".

it makes no logical sense to me that it's entirely reasonable for someone with a raging infection to want antibx, but someone with raging pain shouldn't want pain relief!

[spiralsheep]

on bad days my scalp hurts and the worst day my shins hurt

[...]

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.

YES.

[ironed_orchid]

I love that pain chart, and wish I had been given it the first time I was in hospital being asked to rate my pain out of 10. I asked what 10 was and they said "being hit by a bus." As I'd never been hit by a bus, I figured it was worse that what I was experiencing and said my pain was a 6. On that chart it would be a 9.

Thanks also for writing about your experience. It's so important to have these personal accounts, and I just wish doctors would read them and understand.

You might also like this tumblr post my friend Charlie wrote about being asked "where does it hurt?"

[umadoshi]

I haven't really got anything to say, but wanted to let you know I read this. *quiet hugs*

[tyger]

It might not be epic poetry, but it's definitely a solid vignette.

Shit sucks, I'm sorry. :( Thank fuck for the internets, is all I can say. *leans*

Oh, this did just occur to me, on the loneliness thing - if vidchatting would be easier for you than typing, let me know? Am happy to chat with you for a bit at least! As long as my own brain isn't doing the thing, but you know how it goes. <3 I find vidchat about a thousand times more doable than phones, though.

[silveradept]

That's exhausting just to read. The actual experience can only be worse. Always hoping for a doctor that understands and cam do something.