headpainmigraine - Tumblr blog

[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?

[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-

[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.

[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.

[headpainmigraine]

"pots syndrome" has to be one of my favourite redundant tags.

[headpainmigraine]

This is the second post I've seen today that said it's okay to take pain meds because you're in pain and I keep getting teary each time, and what does THAT say about it.

THIS!!

THIS IS AN AMAZING WAY TO THINK OF CHRONIC PAIN

[headpainmigraine]

Do it, talk about it, bring it up in conversation. You've lived through/are living through agony and all the difficulties that come with it, they can fucking stand to hear about it for 5 minutes while you deservedly bitch.

Your LIFE is not 'TMI'

We deserve to be listened to.

Sick of having to hide one of my core life experiences because it’s seen as “gross” and “TMI”, why should I have to hide the fact that I grew up with chronic UTIs which shaped the way I lived and still live because people assume it’s an STI (which in my case it most certainly isn’t)? I should be allowed to talk about the thing that left my right kidney scared and working at 30%, forcing the left to work overtime to compensate, the thing that caused me debilitating pain since I was 6 months old. That’s a core part of me, why should I be expected to hide it? I’m allowed to talk about my chronic illnesses until they’re considered “gross” then I’m expecting to keep it hidden away, never talking about it as to make sure my peers are comfortable. I’m sick of it, I wanna talk about my issues without being told that it’s tmi.

[headpainmigraine]

CALL FOR AN IMMEDIATE GENERAL ELECTION

Please sign the petition to call for an immediate general election. The sooner this cesspit of a government is voted out, the better.

[headpainmigraine]

The DWP and Tory policies are directly responsible for the death of disabled people in the UK.

Literally, their dehumanising process of applying for benefits, being rejected and having to appeal, leaving people penniless, sending us into a mental health crisis and then suicide.

They have blood on their hands and they're licking it up.

i hate living in the uk

[headpainmigraine]

I don't even bother trying A&E when my migraines are out of control.

You're not going to be considered a priority so you're going to be left there for hours.

They're not going to do anything to help you if they DO see you

And the hospital waiting room environment - bright lights, loud noises, nowhere to lie down, heavy doors banging, other people talking, temperature issues - is hell for migraines.

I've wanted to call an ambulance for them more than once, but I can't cope with that.

Honestly, doctors don't know how to cope with patients who have chronic conditions. They aren't a source of help for us.

I have 0% tolerance for doctors anymore, if they treat me shitty once they will again, thus I'll either drop them or file a complaint.

Before my CRPS was diagnosed i was too scared to stand up to doctors. The pain made me SO DESPERATE i was willing to deal with anything. Now that i have this new undiagnosed illness i realized my body and mind PHYSICALLY cannot do that anymore.

The second to last time i didn't stand up for myself with a doctor i punched the medical bed as soon as she left the room, the last time i couldn't even hear what he said because i was busy restraining myself from punching HIM. i was seeing red, face twitching and everything. My body literally cannot take being quiet anymore. I do not care if i make things more difficult. I don't care if it takes longer to get diagnosed because im pushing for better treatment. I would rather stand up for myself and physically suffer more than let these doctors believe they are allowed to treat me like a dog. They don't treat me like a HUMAN, they don't see us as HUMAN. They see us as pests. A burden, a problem to solve. And if they can't solve you THEY FUCKING HATE YOU. but i think i hate them more.

Doctors are in a gross position of power over their patients, they decide if you live or die, your existence is in their hands, you beg them for help because they are your God and they spit in your face. Even if you literally cry and beg them to help they will give you NOTHING and i know this because thats what i did. I literally BEGGED these people sobbing to help my pain and they did nothing. They do not care about you. They never will. We are not people to them. Nurses are often the same way. I've had nurses and doctors lie straight to my face, make faces when i tell them my story, and do other horrible things.

I can't do it. I can't deal with it anymore. I will fight tooth and nail and be the biggest Karen in existence to these doctors the SECOND they treat me wrong.

I have found two. TWO doctors out of over 50 that i actually like. 2 that treat me appropriately and not like im a bug. 2 that treat me like a human being.

[headpainmigraine]

Factual document.

OP, I'm so sorry.

I have 0% tolerance for doctors anymore, if they treat me shitty once they will again, thus I'll either drop them or file a complaint.

Before my CRPS was diagnosed i was too scared to stand up to doctors. The pain made me SO DESPERATE i was willing to deal with anything. Now that i have this new undiagnosed illness i realized my body and mind PHYSICALLY cannot do that anymore.

The second to last time i didn't stand up for myself with a doctor i punched the medical bed as soon as she left the room, the last time i couldn't even hear what he said because i was busy restraining myself from punching HIM. i was seeing red, face twitching and everything. My body literally cannot take being quiet anymore. I do not care if i make things more difficult. I don't care if it takes longer to get diagnosed because im pushing for better treatment. I would rather stand up for myself and physically suffer more than let these doctors believe they are allowed to treat me like a dog. They don't treat me like a HUMAN, they don't see us as HUMAN. They see us as pests. A burden, a problem to solve. And if they can't solve you THEY FUCKING HATE YOU. but i think i hate them more.

Doctors are in a gross position of power over their patients, they decide if you live or die, your existence is in their hands, you beg them for help because they are your God and they spit in your face. Even if you literally cry and beg them to help they will give you NOTHING and i know this because thats what i did. I literally BEGGED these people sobbing to help my pain and they did nothing. They do not care about you. They never will. We are not people to them. Nurses are often the same way. I've had nurses and doctors lie straight to my face, make faces when i tell them my story, and do other horrible things.

I can't do it. I can't deal with it anymore. I will fight tooth and nail and be the biggest Karen in existence to these doctors the SECOND they treat me wrong.

I have found two. TWO doctors out of over 50 that i actually like. 2 that treat me appropriately and not like im a bug. 2 that treat me like a human being.

[headpainmigraine]

We shouldn't have to rely on the availability and willingness of other people in order to just go into a fucknig shop like everyone fucking else

This isn't accessibility this is not fucking good enough.

Shout out to the store I went to that had steps to get in but if you went to the check out INSIDE they could bring out a mobile ramp.

[headpainmigraine]

Given the latest Tory nonsense this info could change, but in the UK:

- you can claim personal independence payments for disability regardless of employment status

- you can work and receive employment and support allowance as long as you work under 16 hours a week and earn under a certain amount. In some places this might be covered under universal credit. You should have discussions with the job centre re: what you can/can't do for this.

I wish there were partial disability payments. Like yeah I can work but if I work my job full time when I'm older I won't be able to take care of myself (eat, shower, chores) I could work part time if they gave me a little bit to help. Not full disability but just a little. Is that a thing?