#pain things

"I just wanna feel the rain for a bit"

You know that whole 'flushed with love' thing? Yeah, that's currently me. And don't ever apologize for something like this (even the crossed-out sort). I love this so much.

Soooo. I'm not sure if you actually wanted a thing, but I made you a thing because this line inspired a thing. So here's a thing as a thanks (and also because I haven't done that other thing with the thing and that bit of a thing that's a car. it's coming, but still developing, you know? it'll come. it'll also be a thing)

Also, um...I'm now sorry. You'll see why. (but it's the music, it really is. i can't help myself)

you lucky sob

is this a new level of hyperfocus?

or is it a new level of pain dissociation????

Please, for the love of my sanity, stop asking me about my chronic pain.

I know you’re asking because you care, but I don’t want to talk about my chronic pain unless I volunteer the information, something I actually did do one night because it turns out my aunt from WA--someone I didn’t know very well before this last week--was one lone bastion of awesomeness who really talked to me and made me feel heard and empathised with. Or on this blog, where I can tell my story without having to select or filter, where people who follow allow me to control what, where and when I say it. Both this blog and my aunt give me free rein to be frustrated and tired and overwhelmed, to be real, and talk on my terms; both my aunt and my friends here are interested, and express that interest, in other things I do and experience and am. I don’t get enough of that to take that for granted, not ever.

I don’t want to have to say, for the five millionth time, what I’m doing about it, what can or can’t be done, what my medical options are, or why I’m wearing a splint again. I don’t want to have to trot out the same tired responses, because they are always the same--such is the nature of chronic pain. It is so exhausting to have to have this same conversation, this exact same conversation, over and over--often with the same people! Even when I say that things don’t change because this is chronic pain and medical folks really don’t understand or have many treatments for pain, a chronic condition/disability, I can’t get folks to understand. They’re married to a social script that says one should ask about their health, and even though I’m supposed to be the rigid, inflexible autistic with lousy social skills, they can’t dislodge themselves from the script.

(This is why I seldom ask specifically about another’s health, if anyone’s wondered why I don’t do that. It probably seems rude--I know Mum has taken to loud sighs and groans when she wants me to ask how her pain is, so I ask then--but since I don’t want anyone to ask about mine, I’m loathe to inflict this misery on someone else when they’ve given no sign that they want it.)

You’re asking because you care, but the impact is a thousand miles away from compassionate. Yet whenever I try to voice this to Mum, I’m told that they care, that I have no right to get upset because they care about me. It is unbelievably distressing having to explain again what I’m doing, what doctors I’m seeing, what meds I’m taking when I’m cracking open my pill container in public, what options I have, that there really are few options--to feel that I am only a broken thing whose point of interest is my brokenness, because nothing else about me is worth talking about.

If this is compassion, it isn’t working. It just makes me feel more alone, more alienated, more disabled--because I can never go back to being an abled person who gets to exist in terms of friends and accomplishments and card games and fashion dolls. After seven and a half years, surely you all realise that you’re getting the same answer every time you ask? So why do you keep asking? Why do you think I want to explain every time that no, my pain isn’t getting better, when you have the power to take me away a little bit from the shit that is honestly my life by treating me like a person who is more than just my disability?

Yes, people who suffer chronic pain become remarkably good at ignoring pain, speaking as one of them. I wouldn’t manage a damn thing if I couldn’t ignore pain, including the writing of this very post. However, there are also many things I can no longer do because of the pain, and most authors never show this part--the things we sacrifice in order to manage what we can, the things we love or want or need that have become impossible thanks to pain. They show the grand soldiering on, not the sacrifice--just the parts of my story that are palatable to abled audiences, not the entirety of it. Not the distress, not the loss, not the yearning, not the isolation, not the depression. Just the accomplishments, always done by our ability to ignore pain, even though this should never have become a requirement to do what little we can.

It is just another inspiration porn narrative, and I am so damn tired of it.

When an author describes a character who is experiencing severe or extreme pain and manages to do everything with no real problem other than their loving description of their agony, I know that they don’t know a thing about pain. I also know that the author is promoting exactly the kind of bullshit argument that stops pain patients from getting appropriate treatments, because we are told that we should be able to ignore it somehow and do everything. When our stories tell us this, over and over, that pain should somehow be ignored, why shouldn’t we as a society believe it to be true? Why shouldn’t our doctors and caregivers believe it to be true? If stories tell us how to be human, which they do, why shouldn’t this go unquestioned?

I know why I see this narrative over and over again, because it tells humans a story of how they wish to be human, but it breaks me nonetheless.

More than ever, as a chronic pain sufferer, I wish I were in less pain. Not so much as to make my life more comfortable, although that is surely true, but so as I had more ability to write the stories pain sufferers need to hear.

I wish I had less pain so I could write, freely, stories with heroes who experience pain the way I know it.

I know there’s reasons why not everyone can be accessible, but when I’m tired and upset and so low on spoons myself, I absolutely hate every fucking arsehole on Tumblr who doesn’t write an image description. Especially since I suspect several of them have more spoons than I’ll ever have. Why? Why can’t they do something that costs them so much less than it does me? Why can’t sellers fucking describe their own fucking product, for crying out loud? Why am I always the one doing it?

And yes, it’s not fair of me to call them all fucking arseholes, but it’s also not fair that I’m having to write all these image descriptions. And since I know why they’re important, since accessibility matters to me, I can’t not do this.

I’m tired and upset, so take this with all the salt; it deserves it. I’m really not in a state of mind where I can be nice or considerate; all I can be is tired and sad and and angry and bitter and human.

But right now I hate those fucking arseholes who don’t help others and leave a fucking physically disabled person to do it. It’s not fair. It’s not even close to fair.

Because this blog that is breaking me would be a lot easier if I didn’t have to describe those images.

And I don’t want to describe those images. I want to write that thing that’s poisoning my heart. (My dog died and I can’t even write about it.) I want to be able, sometimes, to write things that matter to me, just me, because I need it.

And the hilarious thing is ... I don’t even have the spoons left to be able to tell someone else how to help me. I don’t have the spoons left to answer a message or ask what happened to the people supposed to be helping me or put up a post seeing if anyone will replace the mod that quit or give a list of posts to a friend. I’m out of spoons on this sentence, in negative spoons, and I’m upset ... and I write out my feelings, because I don’t have to struggle with composure and saying things the right way and remembering to say thank you and telling people how to do the thing I need done. This is easier. This post is fewer spoons. Too many spoons, but fewer.

I just fucking wish I had more spoons, because I’m so damn tired of being so constantly in pain.