headpainmigraine

[headpainmigraine]

How fortuitous.

people are constantly trying to deny disabled people the privilege of their own anger. we're forced into situations we don't want to be in have to rely on people or institutions we don't want to, have to constantly project the idea that we're thankful, hopeful, trying our best... it's ridiculous. when a disabled person is angry about something people flock to tell them that they shouldn't feel this emotion. "doctors are trying to help you", "be grateful you even have what you do", "you're the one making yourself miserable". at the end of the day it just goes to show that they don't think disabled people deserve even the meagre amount that we are given, so that's why they think we have no right to be angry

#tone policing #disability #we're allowed to be angry

[headpainmigraine]

"Buying it once or twice is fine, just be mindful." - uhmwhut?

No.

Medical supplies are not toys.

If you don't need thickened water for medical reasons, don't buy it.

It's not a toy.

It doesn't matter if there's enough on the shelves and no shortage, it's a fucking medical necessity. Can you show some respect for other people and not treat medical supplies like toys?

It's like talking to infants.

And the rampant tone policing? "I'm a good cripple, you're a bad cripple" nonsense.

apparently people are now purchasing thick water to make slimes with because of a trend on tiktok

thick water is for disabled people who can’t swallow properly. stores usually have extremely limited supplies of it.

please don’t buy thick water for fun or to make slime with. it’s literally the only way some disabled people can drink anything. It’s not a fucking toy

#thick water #still? #medical supplies #medical supplies aren't toys #are you 5 years old? #tone policing #disabled #dysphagia #ableism

[headpainmigraine]

Guys

If you don't handle dairy products very well, but you know its not the lactose, you could be allergic to milk.

#lactose intolerance #milk allergy #dietary issues #spoonies #chronic illness

[headpainmigraine]

No, it's not "largely true" what the fuck?

All the 'accommodations' in the world aren't going to let me live without pain, or fix my broken autonomic nervous system.

In your hypothetical world, even if the crip!mecha suits were somehow made to be able to access things like public transport, narrow streets, steps, the way wheelchair users today still can't, people are NEVER going to normalise it "to the point they stop noticing."

They're always going to notice. We'll always be 'othered'.

And being disabled isn't the tree in the woods falling and maybe making a sound.

It exists even if no one else is there to perceive it, as us.

"Disability is a social construct" fuck off.

The thing about disability being a social construct is largely true, because when you have a physical issue but receive accommodations + care such that they can do everything able-bodied people can, you're no longer considered disabled. Case in point: glasses. If glasses fix near-blindness, you're not considered disabled, even though you're basically blind without them.

In a hypothetical world where mech suits existed, were cheap and comfortable and accessible and worked well, and were normalised such that people didn't even notice, even quadreplegics wouldn't be considered disabled (although of course that's distant science fiction).

That's what "disability is a social construct" means. In the same way gender being a social construct doesn't mean boobs aren't real, or money being a social construct doesn't mean physical cash doesn't exist.

I don’t agree with this analysis at all.

What hypothetical disabled people might be able to do in the future holds no meaning in the current reality I occupy

You say that quadriplegics will be “considered” abled with exoskeletons - but then you fail to elaborate on the relationship between these devices, their users, and the people who supply them

My father has had type 1 diabetes for 30 years. 30 years is an entire lifetime for some people. The cost of his insulin increased literally that ENTIRE TIME until last year when the Biden admin put caps on insulin prices

Furthermore, his insulin pump retails for 4,600$, and if it breaks, he is still diabetic at the end of the day and will slowly and terribly die without it.

I noticed a lot of people on here have lots of ideas and hypotheticals about how disabled people should and could navigate the world, but their arguments fall flat and topple so easily because you’re not connecting these ideas to anyone’s intrinsic reality

This is why so many physically disabled people are fatigued by the entire “disability is a social construct” conversation. It’s overwhelmingly used by uneducated 17 year olds to minimize and downplay and discredit the real-life, life-or-death interactions and experiences many physically disabled people live with

[headpainmigraine]

Last(?) year I collated some data from my headache diary and found that April-May and November were my worst months

Late spring and autumn, when the weather's changing

Not so coincidentally, this month has been BRUTAL.

My fellow migraineurs on this side of the equator, if you're having a rougher time than usual right now, that might be why.

Stay strong.

#chronic migraines #migraines #migraine #headache #chronic headache #chronic pain #spoonies

[headpainmigraine]

Honestly, if you're that ignorant about the human body, you shouldn't be working in physical therapy, or anywhere near people who live in bodies.

Go back to school.

OP, you deserve a medal for not hitting that ignorant cow.

Sometimes I remember my physical therapist, who was overall pretty good at treating me and specialized in EDS chronic pain, told me she was shocked I have the elastic skin trait because, according to her, thats a classic EDS symptom and "only people with translucent skin are supposed to have classic type EDS".

After poking her a little bit more, she just said "well, its just, only people with milky, velvety, really white skin, are supposed to have this type of EDS, so I didnt think you could have stretchy skin".

Completely insane and pulled out of her ass yes etc but like. Literally did not test me for a condition that could be my case and that she knew of. Because she thought it was a whites-only thing. Like. Girl...... anyways, reminder to all my racialized chronic ill besties to always make sure your health care pros dont have this mentality.

[headpainmigraine]

Saying to these people, "you're right, could you refer me to a doctor who knows what they're doing, please?"

I wish there was some kind of treatment. Anything to help. A medicine or a pill or a surgery or some kind of procedure. Anytime I go to the doctors or a specialist for my pain or my symptoms they just go 'well what do you expect me to do?' I've been told to take ibuprofen and shut up and stop bothering them. I'm losing hope.

[headpainmigraine]

YOUR JOB, ITS YOUR JOB, ITS YOUR PROFESSION, THE CAREER YOU CHOSE THAT YOU WENT TO SCHOOL AND STUDIED FOR I EXPECT YOU TO DO THAT, JUST DO YOUR FUCKING JOB!!!!!

I wish there was some kind of treatment. Anything to help. A medicine or a pill or a surgery or some kind of procedure. Anytime I go to the doctors or a specialist for my pain or my symptoms they just go 'well what do you expect me to do?' I've been told to take ibuprofen and shut up and stop bothering them. I'm losing hope.

[headpainmigraine]

OK, but, did you see what he said about the Tory party?

"He suggested the party had stopped valuing public services, saying: "The difficulty for the Conservative Party is that the party I was elected into valued public services... it had a compassionate view about supporting the more disadvantaged in society."

LOL, what? WHEN?

We're you asleep? Was it a dream? Pft.

[headpainmigraine]

What do you do to treat yourself?

I can't use food as 'little treats' anymore because a) diabetes and b) fat

I can't go out to do stuff because of the pain and the faffing with the wheelchair, so outings are rare events

I have no money because I'm disabled and therefore would be better off dead than a drain on the economy, AKA, I'm still waiting for my PIP tribunal and am surviving on ESA for now

I can't do anything too active because of POTS, dysautonomia and pain, mostly from migraines which are chronic

The migraines fell me like a big tree sometimes, so I need something I can put down without a lot of tidying away

I'd just like to hear what other disabled people do when they want a little something-something to keep some scrap of joy in their lives, as a pick me up or just because.

All I can think of at the moment that are easy to access, cheap, not too energy expedient and available whenever are fancy baths

Even then I have to have a little energy, bubbles or bath bombs and to not actively be having a migraine which hmmm

Nothing matches the convenience of just grabbing a little snack so far. I'm hoping someone has ideas?

I'm into plants, which are easy enough but cost money

I'm into aquatics, but that's a huge money and energy sink, though I'm doing what I can.

I have art hobbies, but I'm in need of something less of a 'thing to do' and more of a 'thing to have', if that makes sense.

Anything self-contained, simple, affordable and easy to do? Anyone?

#disability #chronic illness #chronic pain #spoonies #chronic migraines #chronically ill #little treats #treats #help

[headpainmigraine]

SO!

I went into my physio appointment with a copy of my headache diary to show her what pain levels I was dealing with, so that she'd see how restricted my abilities are.

The minute I told her what the thing was she said 'I can't help you with migraines, I don't do migraines, this means nothing to me' which, yes, I know you don't do migraines, but this is a PAIN SCALE, which SHOULD mean something to you, even if it is just about headaches.

I had to explain to her why my experience of daily pain MIGHT INTERFERE with my ability to do the exercises she prescribed, which is why I was showing her that.

My expectations: 'here's some things for how you can work around your daily pain'

Reality: 'well, do it when you can, the numbers are just a guide'

which, yes, but I do WANT to do some of these things that you claim will make the pain less, but how??? Always 'do it' never 'how'.

Anyway, she checked out my joints, etc, gave me more physio, whatever.

I asked her about the possibility of Ehlers-Danlos which she'd floated last time, and this time she checked me out and concluded that I don't have it, as I expected.

I do have hypermobility though.

I had brought along something about my ongoing GI issues and my lost referral to gastroenterology, but I knew she definitely wasn't the person to ask.

It was a double appointment too. Someone should remind doctors that part of their job involves seeing patients.

And the diabetes diagnosis over the phone was fun(!)

They haven't sent me the info they said they were going to email to me, so I've been doing my own research. I have no idea what my blood sugar levels are, and I don't have the prick test equipment to check up on it either, so fuck me I guess.

IDK you guys, at a certain point you just start to wonder what the point of all of it is.

[headpainmigraine]

If someone wanted to make a remake of wizard of oz or willy wonka or snow white and the seven dwarves, what would you say would be the best way to fix the stereotypical depictions of magical or inhuman little people? Would it be to just make them Not little people anymore, make them another creature, or to make them like, people with dwarfism? I've heard some ppl bring up the idea of having dwarves in snow white be actual in-world little people as opposed to a mythical race of 'dwarves', but it seems that would carry its own problematic connotations to extend that to what is clearly a race (munchkins) or a pseudo enslaved/servant populace (oompa loompas) would it be better to just remove these characters entirely or have their roles reprised by non-little people? On the one hand, it seems that many of them do not need to be little people, but on the other hand it seems a shame to remove roles for little people.

(i kind of feel oompa loompas are a bit hard to make work at all given they are explicitely black slaves in the original and clearly carry a sort of enslaved populace connotation in most adaptations, but I'm legitimately curious about munchkins, whose size doesn't seem to matter very much in most stories.)

Hello! My answer is to simply stop retelling these stories. The very fact that we hold onto them so dearly when they're as harmful as they are is a huge problem. We need new stories! Depicting real, complex dwarfism. We need a wide range of disabled characters and better representation for little people - and Snow White is not going to be who saves us. Fixing these stores will not undo the harm they've done. We need to leave them behind and write better pieces.

And we as consumers have done that with so many other pieces of media. We've discovered that they're harmful to a certain group, no longer supported it, and moved on. So why not with little people? Why can't folks give us the same respect?

If you can understand that the oompa loompas are problematic because they were based off black slaves, you can also understand that they were problematic because they were dwarf slaves. The two intersect in the films, and they shouldn't be so beloved in my opinion.

And the answer is not to just recreate these stories without us in them - they were built on our backs and that is their legacy. Sweeping it under the rug wouldn't change the decades of harm they've done and the oppression they're a result of.

Just 👏 stop 👏 making 👏 more 👏 of 👏 them

Leave them behind and make better pieces with LP characters!!! Make them complex and loved and diverse and human!!!

[headpainmigraine]

☝

[headpainmigraine]

Look, I'm not saying doctors are useless when if comes to chronic pain, all I'm saying is that if I could buy a set of little drill bits of varying width and/or a trepanning kit-

#migraines

[headpainmigraine]

why I have a problem with the term "ambulatory cane-user"

because it's redundant. that's pretty much it. "ambulatory" simply means able to walk (aka ambulate).

for wheelchair users, using the term ambulatory wheelchair user if they can walk a bit makes sense. because there are wheelchair users who can't walk or even weight-bear at all, it helps sometimes to distinguish between ambulatory (able to walk some) and non-ambulatory (unable to walk).

some people, it seems, have mistaken the word ambulatory to mean "part time." by nature, all cane and crutch and rollator and walker users are ambulatory whether or not they use their mobility aid part-time or full-time.

therefore, describing yourself (or someone else) as an ambulatory cane user when you really mean part-time cane user isn't very meaningful at all.

[headpainmigraine]

Hey guys

On pain scales, "0" isn't your baseline

"0" is "no pain"

If you have daily pain, you're not at 0, you're at 3 or 5 or whatever.

Please don't mark yourself at 0 because you're used to being at 3. It's 3. If it's the way you feel all day, every day, for months, it's still 3.

#pain scales #pain scale #diagnostic tool #chronic pain #spoonies #chronic illness #disability #pain #pain management

[headpainmigraine]

"you are being incredibly hostile to people who want to learn" - not Morg's job, or the job of any disabled person, to educate ignorant people who don't even ASK questions, but just comment as though they know what they're talking about, and always end up treating us like dumb animals.

"But as a fellow disabled person, I no longer can relate to or find comfort in your posts." - lol, holy shit

"it becomes better for you to let the opinions of others go" - yeah, no, it's NOT better to let the opinions of others go, actually, when the opinions of others are "maybe you'd be better off dead", "maybe you should just pretend you aren't disabled", "let people abuse medical supplies for fun or you're being mean" It's better to push back against those opinions actually.

"And I hope that the hate in your heart does not continue to grow. Hating the world does not keep you safe from it." - this is a WILD thing to say about a man who actively goes out to plant native flowers in urban areas because it's good for everyone.

Being angry because the world is stacked against disabled people doesn't mean you have hate in your heart. Entirely the opposite.

Morg is one of the few people on tumblr with the strength, despite being in pain, despite being in a constant fight with his mental health, who won't take anyone's shit about the disabled experience when they don't know what they're talking about.

He doesn't hold their hands and lead them gently to the 'right answers' while cooing at them and petting their hair because why the fuck should he have to for people who are so uneducated about being disabled that they will see a video about using a towel to put on your socks and still say it's a useless thing to do

It's so fucking simple and they still don't get it, they don't even make an attempt to get it, and no. You're able to educate yourself about racism to be a "good person", you can educate yourself about genocide, well you can all fucking educate yourselves about being disabled too.

Have you seen the comments on the thick water posts? Literally clueless morons asking the same basic question over and over again, even though it was already answered, even though Google. It couldn't be easier, multiple people put the answer RIGHT THERE and these people STILL ASK.

You get angry when you're in chronic pain, mostly because chronic pain changes the wiring in your brain towards fight and flight. Being in constant pain is tiring. It limits your energy, and time, and ability to think, and Morg is dealing with quadriplegia too. Daily activities get harder when you're in chronic pain.

We're people with less energy, less time and who are more on edge, who are being told - out loud or quietly through action - that we're lesser humans who are too much trouble to others to let us exist.

Have you seen the state of the UK's benefit system?

And in Morg's case, half his pain is because of botched medical intervention. And they've left him like that, they're not apologising to him him, no, they're literally now taking the opportunity to parade their colleagues shitty work around like Morg isn't a human who's life was heavily impacted because of their incompetence, WITHOUT EVEN FUCKING COMPENSATING HIM.

And he still plants native flowers.

Literally, who the fuck do you think you are, anon, to expect someone's personal diary to be palatable to you, and to tone police them when it stops being so?

I really used to love your blog, but you are being incredibly hostile to people who want to learn and you are assuming people mean to be malicious. As a disabled person, I totally get it. In a sense, pretty much anything that isn't a specifically disabled space (and even sometimes those as well) ARE hostile to disabled people and create tons of barriers that make it difficult just to survive and exist. I understand your frustration, I understand that it is something you desperately need to express. But at some point, it becomes better for you to let the opinions of others go or to try and shift your mindset that not everyone is out to attack you. By all means, block whoever you want to block, express yourself however you want to express yourself. But as a fellow disabled person, I no longer can relate to or find comfort in your posts. Most of which as of lately are FILLED with hostility and are incredibly defensive (which again, I TOTALLY understand.) I only send this ask to wish the best for you. I hope that you can find some place that feels safe, some place and people who accommodate and take care of you. I hope that you can believe in a future where people truly want to help and learn. And I hope that the hate in your heart does not continue to grow. Hating the world does not keep you safe from it. You do not need to bring hostility to the world, the way it seems to do for you. I wish for you to feel safe enough to have an open heart and find happiness as a disabled person.

Hey. I just want you to know that I don’t care like not even slightly. Please unfollow me, in fact block me. I have no patience for this manipulative bullshit.

I’m going to die some day (probably sooner rather than later) and I don’t exist to suck your toes and jack you off while you constantly question my humanity and my right to have the most basic human comforts

Maybe you should work on why you see other disabled human beings (who have feelings, btw!) as living Wikipedia pages who should calmly and joyously educate you while you say stupid shit to them, repeatedly, and without a single care about how it makes them feel.

I know you thought it would be, but my self worth is not located in the approval of random people who don’t even have the balls to come off anon and talk to me.

Farewell, bucko.