#anyway it's the chronic migraines actually

[guinevereslancelot]

[steps into direct sunlight and bursts into flames like a vampire]

[s-ccaam-era-crepe]

i think everyone who's ever had migraines should be financially compensated forever btw

[chamelien]

take a look, it's in a book

[milkweedman]

Hi, you said in your bio that you're chronically ill. I was wondering if you had any tips for knitting with chronic pain (assuming that's your flavour of chronic illness)? Or do you know anyone who could give me advice?knitting/sewing is my sanity-saver.

I use compression gloves, only knit with specific weights of yarn (the ones that are the least painful for me), and try to take frequent breaks, which for me looks like switching hobbies every 30 minutes or so (knitting to spinning to knitting, etc). I also do my best to be very gentle on my joints when i can, altho i honestly rarely have the choice at work.

Personally i have joint problems and migraines, so thats what im correcting for/trying not to make worse. Helpful advice probably varies depending on what youre trying to correct for. Really my only general advice is "when it starts to hurt, try to stop" and "if possible, save the painfully difficult stuff for when youre doing well, and make the easier stuff your usual work"

If anyone who sees this has got other tips please feel free to comment them

[tofu-bento-box]

being chronically ill is like having footnotes on your existence

[pa-pa-plasma]

Wait what do you mean healthy people dont loaf??? It's so comfy why wouldn't they do that?

I'm saying this as someone with hypermobility which is, I'm sure, completely unrelated to why I think this./s

people are so weird, what do you mean "i wish humans could loaf"? this is so easy! heehee

[beazt]

ok I’ve put together a list of disability-focused books for me read while I have the Seattle library ebook card. I’m not sure what order I’m going to read them in, yet. and obviously this list is non exhaustive, it’s just what I could find & deem worth reading from a surface level glance at the blurbs right now, while I have a migraine. i fully intend to explore other topics and revisit other titles im unsure about/prioritizing lower, I have them tagged separately on Libby.

if anyone would like to join me on this journey— be it by reading/listening to the books yourself at your own pace or just following my own posts about what I read— I’m going to come up with a tag for this journey. suggestions for that are welcome, I just want it to be a near-unique tag because tumblr search is awful

(most of the titles I have selected for this list at least make a notable effort to be inclusive and intersectional, if you’re worried about that. however, I have not read any of these yet, I cannot confirm anything about their actual content. I guarantee there will be excerpts worth critique from books on this list. part of exploring these heavy social topics is critical thinking.)

my current list is as follows, in no particular order:

Fat Girls Hiking by Summer Michaud-Skug — I’m interested particularly in modifying hiking (and other outdoor activities) to be more accessible for myself, as I love hiking but find it very difficult nowadays, the book seems to be at least decently disability-informed

The Future Is Disabled by Leah Lakshmi Piepzna-Samarasinha — disability justice for a better future that emphasizes the value of disabled folks. overall interested to see the perspectives and rhetoric presented in this book, along with:

Care Work by Leah Lakshmi Piepzna-Samarasinha — I don’t think I can do this one justice in a couple lines of tumblr text. read its blurb yourself, it includes: “a toolkit for everyone who wants to build radically resilient, sustainable communities of liberation where no one is left behind.”

My Body Is Not A Prayer Request by Amy Kenny — appeals to my experience living as disabled and intersex in a rural part of the Bible Belt in an evangelical household

Disability Pride by Ben Mattlin — gonna be honest, I threw this one in without reading its blurb. regardless of its quality, I believe I should read it based off title

Crip Kinship by Shayda Kafai — this book is based around an art activism project called Sins Invalid, exploring some of the messaging of it in a disability justice framework

Against Technoableism by Ashley Shew — from what I can gather, this book touches a lot on the social model of disability

Decarcerating Disability by Liat Ben-Moshe — prison abolition and decarceration with a disability focus

QDA by Raymond Luczak — QDA stands for queer disability anthology, also threw this one in based on the title

[whatisthisnonsense]

"mutants are poc analogy" "mutants are queer analogy" Listen, X-Men and as such mutants as a whole should really be disability representation, and I mean representation and not analougous to it they just occassionally also get to blast ice while having furniture not built for them, struggles with keeping their mind in the present, and constantly having people casually discuss sterilizing or euthanizing them and being considered either dangerous or simply incapable of understanding when they get mad about this. But nobody is ready for this conversation.

[queenlucythevaliant]

The assassination of Julius Caesar in fiction

The October Horse by Colleen McCullough // The Ides of March by Thornton Wilder //Cleopatra (1963) dir. Joseph L. Mankiewicz // A Piller of Iron by Taylor Caldwell // The October Horse, McCullough // Caesar (1937) dir. Orson Welles // Cleopatra's Daughter by Michelle Moran // Julius Caesar, William Shakespeare // The October Horse, McCullough

[urdtarah]

it's kinda crazy that chronic illnesses are defined as such after a year because even after a decade people still act like your exaggerating if you call it a chronic illness

[nocherryblood]

May I add: living with chronic anything.

Sometimes people with chronic conditions do everything they can to avoid making symptoms worse, or to manage their existing pain. Creams, meds, long medical treatments, etc. Sometimes it's long and monotonous, and people are still in pain afterwards. Sometimes it's more manageable.

Sometimes, people with chronic conditions might not want to do that. Sometimes they just want to carry on as they are. Maybe it's health risks, or monetary reasons, or it's just not worth it. Sometimes people just don't want to do it, full stop.

Chronic conditions are chronic for one reason: even if they come and go in bouts, even if they're "not that bad"... they don't go away. Sometimes they remain forever, sometimes they may go away. But either way, you will have them for a significant portion of time.

Some people have cures and medicine that helps them to live as uninterrupted as possible, some don't- whether it's access to funds to get it, or because there literally just isn't something like that out there in the world, or maybe it's too risky. Sometimes you can be cured of one thing and it causes another, or it can come back, or, even if your main symptoms are gone, you may be left permanently affected by what the condition did to your body.

Some people have low pain or needs- this doesn't mean they're "overreacting" or "being too dramatic". Pain, even on a low scale, can be absolutely debilitating over a prolonged period of time. Sometimes, medical specialists can get very temperamental over this- personally, my conditions always get missed on 95% tests even if the markers to indicate I have them are there, so the specialists are very reluctant to give me help at first because they don't understand how much my pain affects my life until I prove to them that that help supports me to try to carry on as best as possible. This meme pretty much sums it up (for those who are confused, π, or, pi, is a number that never ends- the calculation for it has been going on for hundreds upon hundreds of years and we're still nowhere near the end seemingly):

On the other hand, some people experience extremely high pain levels and/or are severely affected by their chronic conditions, so much so that it limits them from doing a majority, if not all, of their daily life activities. Some can manage with a carer or assistant, some cannot. That doesn't make them "useless" or "unworthy" or "lazy". They are valuable as all humans are to each other, no matter whether or not they can work "like everyone else" to fulfill that cruel, uncaring, devaluing shitshow of modern expectations of an adult or not. Human decency and care for each other shouldn't ever be associated in the slightest with output or ability.

Sometimes, people's conditions are "intrusive" and/or affect other people's lives (e.g. family becoming carers or assistants, needing more support, being unable to control impulses or body functions) and whilst, yes, sometimes they can take effort to deal with by people on the outside, the person themselves is not incontrol of their condition and complaining 24/7 about it to them will just make them feel like crap. Contrary to popular belief, many people with chronic conditions are actually extremely aware of the effect of their condition on themselves and especially others, and are constantly overcompensating for it and putting so much effort into dampening it down just to make it more "palatable" for others. You don't need to tell them what they already know- if something's really affecting you, maybe come up with a realistic way to help before you ream off about how much something they're having to deal with is annoying you.

Please, don't expect someone to move mountains if you're not going to give them the rope.

And the final point I'm going to make is... please, for the love of your own compassion, sometimes there are people who are tired of having to constantly have to avoid triggers or irritants (e.g. with skin conditions), and want to allow themselves some semblance of being able to live like fully non-chronically affected (i.e. not living with a chronic condition) people for a while.

Concern is a lovely thing to have, but sometimes, people just want to have a bit of a break, y'know? I understand if there's concern about someone continually, severely harming themselves with their actions (i.e. eating an allergen they're highly allergic to, or something that could seriously harm them long-term)- of course, speak to them or try to empathise with them and then bring up your concerns, or come up with something alternative for them.

But if it's a short-term thing? Just let me have this one thing, please- my mental health needs it too. Don't judge me for wanting to have one long night out even if I'm chronically exhausted or easily get overwhelmed. Don't judge me if I have chronic skin conditions but want to have one nice perfume or pretty bath even though I'll be barely able to tolerate clothes in the morning. Don't tell someone they're dumb because they want to take a walk even if they may not be able to keep moving for long. I, and they, can regulate ourselves- we know the risk vs. the reward and sometimes you just want to do "normal" things for once.

Just... please. We're not defined by our conditions, but it doesn't mean we're not constantly affected by them too. They're a part of us, they're not always a welcome part of us, but they're there and we have to deal with them. Just please don't forget: just because we seem happy or fine, doesn't mean we can't be in pain.

when u go to write a mentally ill person in ur story you are presented two options. the first option is to write your mental illness realistically as you actually experience it with all the ups and downs and people who are like you will resonate with it and feel seen. except every person who reads instagram infographics on mental health that uses the phrase narcicisst for anyone who does anything that crosses them and unironically call themself a dark empath will call you scary and tell you that youre demonizing mentally ill people

the second option is to lie and write inspiration porn for those people to get hard to

[katyobsesses]

uhhhhg if i could stop having headaches that'd be awesome

[why-animals-do-the-thing]

hi! can i ask what's ur opinion on giving pets away? not necessarily because u can't afford to care for em anymore but maybe incompatibility of personalities or maybe lifestyles. is it wrong to give ur pet for adoption if u know someone who's better suited for keeping a pet, like emotionally?

This is going to be controversial, but I support making that choice.

There’s a lot of rhetoric lately around how it’s evil and unethical to rehome your pet if you don’t “need to.” And what that does is prioritize human ideology over the actual animal’s well-being.

Pets that aren’t a good match for your home or pets that aren’t really wanted anymore frequently have lower welfare! When caring for an animal becomes a burden or is forced, people end up resenting them, and that means the animal often doesn’t get all of its needs fulfilled. Even if you’re still feeding it and providing appropriate vet care, how likely are you to provide affection or enrichment to an animal you’re tired of being stuck with?

Lifestyle and personality really matter to making sure a pet is a good fit for a home. A dog that alert-barks at every leaf that moves is probably a bad fit for someone who has a chronic migraine syndrome, and they might not know that until the dog has been in the home for weeks and started to open up. A really feisty kitten that requires a ton of play might not do best in the home of someone older who wanted a quiet lap cat. And while you can you do your best to plan to find a compatible animal, you won’t always know ahead of time what issues might arise.

“Forever home” rhetoric is really, really popular and I think it’s very unfair to the animals it is supposed to support. It started with the backlash of seeing animals abandoned inappropriately, and has been heavily reinforced in the public mind because it’s so frequently used to drive fundraising and support for legislation. The whole “forever home” concept communicates to people that getting an animal is an immutable commitment and that if you can’t keep an animal, it is a personal moral failing. It frames human priorities (we think people who get rid of animals are Evil and Bad and should be shunned) as more important than actual welfare needs for individual animals (are they getting the care they need where they are).

Obviously, I don’t support people dumping animals or just getting fad pets they’ll discard immediately, but there’s so many alternate situations that can arise. Even if it’s just “they got a pet and didn’t know what caring for it would take and didn’t want to care for it so they brought it back, how awful” like… okay, I’d like the person to have done more research before they got a pet, but isn’t it better that the animal now has a second chance to go to better home? Knowing what a commitment requires theoretically can be very different than having to actually follow through regularly, and I’d rather see someone maturely acknowledge that having an animal isn’t a good fit than keep it anyway!!

If animals being happy and with all their biological, veterinary, and social needs fulfilled is actually the goal, we need to prioritize their welfare over human opinion. I’d much rather see an animal rehomed responsibly to somewhere it will thrive and be welcomed than see people keep animals they can’t/don’t want to care for out of guilt or shame. 

[ebdanon]

wishing you the best through your covid recovery and sending love for you and your dad 🫶

i got covid late last year and it was hell to see it spread to my family too ☹️

we’re here, ebdanon, we’re here 💜

-💫

thank you bb i appreciate it!! im doing okay myself luckily 🙏 its not too bad other than me being very tired

[isa-renee]

wait wait wait wait hold the fuck up. do most people actually spend the majority of their time not in any pain???? like. none at all??????

[queenlucythevaliant]

Not to hijack what is genuinely a very excellent post, but - this made me remember how, in the eighth grade, I decided to read Grant's autobiography pretty much entirely because I found out that he suffered serious migraines (which they used to call "sick headaches")

He had migraine during parts of the Battle of the Wilderness (iirc) and commanded from his nice dark tent, which is absolutely nuts to me. More to the point re: Appomattox, he got a migraine on the way there and spent the night before the surrender miserably putting mustard poultices on the back of his neck. Grant claims that the migraine went away immediately when he got Lee's letter saying that was going to surrender, but I remember that I absolutely did not buy that when I first read it.

Now that I understand more about stress-induced and especially let-down migraines, I find it easier to imagine how his migraine could have abated so quickly. However, I do still suspect that he felt crummy and exhausted for the rest of the day. He was probably dealing with postdrome during one of the most important days in American history (which could definitely have caused/contributed to his getting side-tracked, as described above) and yet he still managed to be so measured and magnanimous. I have so much affection and admiration for the man.

I finally finished Grant's memoirs, and I keep laughing over Grant's depiction of the surrender at Appomattox.

Cuz like

Grant's traveling to the front when Lee sends the letter asking to meet to arrange the surrender, and the messenger had to track him down on the road. Grant, who'd had no idea that things were going to happen so quickly, isn't dressed for the occasion. He's wearing a private's uniform with only his general's stripes showing his rank, and he doesn't have a sword because he never wears a sword when traveling on horseback. Meanwhile Lee, who plans to go down in style, is impeccably dressed in perfect uniform and carrying this gorgeous sword. And Grant's like, "It didn't occur to me until days afterward just how weird we must have looked." Which is just so relatable, cuz like, this is a climactic moment in a major world conflict, but it's also just another day for a socially awkward dude.

And when Grant gets there, he tells Lee how he remembers him from the Mexican War, but figures Lee couldn't possibly remember him because Grant was sixteen years younger and of a much lower rank. And Lee's like, "No, I remember you and I was pretty impressed." And they get to chatting and reminiscing, until Lee has to remind Grant that they need to discuss this whole surrender thing. And they do, but then they get sidetracked again, and Lee has to once again be the one to get things back on track by saying, "Hey, maybe you should write down those surrender terms."

It's just such a funny image to me. I know this is entirely inaccurate, but I just keep picturing Lee standing there politely while Grant's chatting and having to awkwardly raise his hand and be like, "I hate to be rude, but I'm here to surrender." Grant just wants to be bros and this stupid war keeps getting in the way.