Sorry, Out Of Spoons

I'm all out of spoons, but I'm going to try and be positive anyway. Wedding | they/them | 25

[antiadvil]

it's wild that popular discourse around migraines is that there are too many people who claim to have migraines but "just have bad headaches". this is the exact opposite of my experience? i'm still trying to convince several of my friends that their "bad tension headaches" that are unilateral, throbbing, cause light sensitivity, nausea, etc, are migraines lmao. migraine is underdiagnosed and undertreated by every metric i can think of.

this narrative is not harmless! it prevents people from getting treatment that could really benefit them. so i would like it to die. thank you.

[trans-gothic]

[dat-eyebrows]

@gendernewtral holy shit what??

[gendernewtral]

an update to my insulin pump (a model which is highly recommended by doctors because it has software you can update, unlike other models) would allow my doctor to see more of my medical data because of the way my pump would now function.

i technically had the choice not to update it, but if i didn’t, my insurance company would not cover the cost of fixing or replacing it if something happened to it. they could say that the damage came from not updating the system, even if the damage was completely external.

some of the software updates have been beneficial, and have made my life easier. however, the choice to use these new system has always been made for me. i can’t afford to replace this $3000 device that allows me to live without injecting insulin upwards of five times a day.

disabled people already live in a world that is hypermanaged by people who have absolute control over our health and safety. anyone with a prosthetic, hearing aid, or pacemaker can face the same problem i did if the manufacturer decides they need to exert their presence in our lives more than they already do. the “cyberpunk dystopia” is already here, and if you want to change the ever-growing vice grip of “smart technology,” help disabled activists. we’ve been here all along.

(if you want a short primer on what it’s like to be disabled and rely on technology, read Jillian Weise’s personal essay in Alice Wong’s Disability Visibility).

[fibro-memes]

[swoony-spoonie]

When the brain fog kicks in..

[corpse-toy]

Hello This Is The Office Of The Specialist You Were Referred To. We Have Decided To Never Call You To Schedule An Appointment Because You Are Evil And We Do Not Accept Evil Patients

[peachdoxie]

I love talking with neurotypical people about my executive dysfunction because I'm like "yeah there's this invisible wall in my head that I'm incapable of getting past no matter what I do and it stops me from doing things" and they're like what the actual fuck

Meanwhile other neurodivergents are like

[evil-enby-osoka]

sometimes "but you don't look disabled" is not even about the visibility of your disability. sometimes it's about "you look like an actual person and i picture disabled people as some weird creatures that i can never ever meet and now my reality is crashed by the fact that i see an actual disabled person and they look like a person."

[sickbitterandcoveredinglitter]

Like a month ago I messaged a craft group about accessibility for wheelchairs and the answer I got was “there’s a lot of stairs but we have cute boys who can carry you”. And it’s…not good. As a wheelchair bound person I largely depend on people when I want to go out and do *anything* so I’m used to it, I laugh it off, make an annoyed post about it and off I go. But I wanna just say a thing real quick.

Even if I wasn’t gay, wasn’t a survivor scared of men, getting help as a disabled person is just…Not a pleasant thing to us! Imagine for a sec how you’d feel being carried up a flight of stairs. You’re a grown person. You’re being touched in an awkward way. You’d rather do it yourself. You’re So Uncomfortable. It’s not where I look for the beginning of a romantic relationship. So like…could abled people stop doing this thing where they think helping us in a condescending and infantilizing way is cute? Cause I’m real tired. Just get me a ramp or lift and I’m cool. I don’t need a dating service when I’m just trying to go about my day

[sickbitterandcoveredinglitter]

If you’re abled please reblog it cause like…the more ppl knows the better

[northstareclipse]

stop medicalizing every person you don't vibe with

[myjourneywithfnd]

"....three factors that universally lead to stress: uncertainty, the lack of information and the loss of control. All three are present in the live of individuals with chronic illness."

- When the body says no

[leolaroot]

when a child with chronic or terminal illness or a disability/their sibling is well informed about the condition strangers love to say "no child should have to know that 😢" yeah well i think the world would be significantly better if more children knew about that actually. teach your healthy kids about illness teach your abled kids about disability Please !

[leolaroot]

and people will say this about the stupidest shit of all time. a diabetic child is like "this is my glucose monitor! these are my ketone test strips!" and people are aghast "no baby should have to know about this!!!!" okay so youd rather his mom just poked and tested him and injected insulin and collected his urine without explanation? you genuinely would prefer this child live in fear and ignorance about the daily routines of his life? because like no amount of pouty faces and prayers and condescending instagram comments are going to remove the illness from the child's life so our options are being informed about our bodies or being confused/frightened by them.

[fibromyalgicaf]

Hey if you have chronic pain, you gotta remember that the cognitive load of dealing with that is exhausting. Just that alone. Never mind what else you've got going on.

You're not lazy or being dramatic; you're overloaded.

[draconym]

I think it sucks that you have to go to so many different kinds of doctor to take care of yourself. It's the 21st century. I should be able to go to a single office where they scan me with a big xerox machine and tell me what I'm allergic to and why my tummy hurts and if I have any cancer or cavities or if my glasses prescription has changed. And then I should get a sticker.

[borgevino]

so fucking stupid that meds literally work. "swallow this pebble it makes you think" hateful

[hellish-undeath]

i love medications and swallowing pills #mypebbles

[snommelp]

[gaanata9]

[californiagoddess]

[shamebats]

The whole concept of migraine triggers is just perfectly suited for making disabled people who are already suffering waste time & energy obsessing over every single thing they do every day, especially their diets, and to then blame themselves for their attack like their problem is a lack of discipline & willpower and not the fact that they have a chronic illness. If you get migraines, that isn't because your lifestyle & diet isn't sufficiently optimized, it's because you have a migraine disorder.

[shamebats]

My neurologist didn't waste any time trying to get me to identify triggers and just got me on the right meds as soon as she could and I'm so glad she never made me feel like it was somehow my fault.

I'm now finally on a preventative that works for me & I literally don't do anything differently but I went from having daily migraines to sometimes not having a single one for over a week. I could do & consume every supposed trigger & still not get a migraine, when before the medication, I could do everything "right" every day for a week & still get a migraine every single day.

It's always like it's a medical disorder that causes your body to react badly to certain normal daily things & the goal should be to make it do that less, not to find ways to totally avoid all those normal daily things.

[shamebats]

Yeah...they're caused by migraine disorders. Because people without them don't get migraines on a regular basis.

The chocolate advice is probably bullshit too. Unless you specifically identify it as something that makes your migraines worse (unlikely), it's way more likely to just be a common craving people have during the prodrome phase before the pain starts. If it's your body signaling you that it wants chocolate, there's no reason not to eat it.

Also, my neurologist said if you take triptans, take them during the headache phase immediately when it starts, not during the aura.

[shamebats]

This isn't just my opinion btw, it's the current state of migraine research that shows that a) evidence for the belief that specific foods can trigger an entire migraine in someone who would've otherwise not had it is just not there and b) people are prone to misidentifying "triggers" and c) some "common triggers" have been shown in research to have protective qualities against migraines in some people and finally, d) the most up to date approach is to, instead of chasing possible triggers, raise your migraine threshold, which for some people can be achieved only with medication, but stuff like exercise & a nutritious diet could possibly also help you become more resistant too, once your threshold has been raised enough that you have the spoons for it, that is.

The Science Behind Migraine Triggers: Are Migraine Triggers Real or Part of the Prodrome Phase? | American Migraine Foundation

Learn more about how “triggers” may actually be signs of migraine prodrome and why identifying migraine triggers is not always easy.

Sometimes when people attempt to carefully track and avoid all their triggers, it creates a sense of guilt. When we think about it this way, the burden is on the person with migraine to avoid their triggers, and people may feel that if they experience an attack, it’s because of their own behavior. “Many times it is just the disease,” says Dr. Halker Singh. “This is the unpredictable nature of migraine. I think we carry enough on our shoulders as it is without the added stigma or guilt [around triggers].” Instead, we can shift to a healthier conversation about awareness in migraine management by learning to recognize prodrome symptoms and early signs of a migraine attack. This puts the focus on a deeper, more personalized understanding of each individual’s own unique experience with migraine. “I think making that shift is a little bit freeing and allows us to separate ourselves from migraine,” says Dr. Halker Singh. “My personal relationship with my migraine changes a little bit—I can separate from my own guilt and say, ‘OK, this is happening, what can I do about it?’” This kind of shift enables someone with migraine to focus more on self-care and addressing what their body needs in the moment during an attack.

The Migraine Trigger Myth: Why We're Often Wrong About What Causes Our – Cerebral Torque

New research reveals that 82% of suspected migraine triggers may be false. Learn how science is challenging traditional beliefs about migrai

Diet and Headache Control | American Migraine Foundation

Your diet can sometimes impact your migraine. Learn which foods are suspected triggers and how to adjust what you eat to help prevent or rel

One study compared headache activity between two groups of people living with migraine while they followed different diets. One diet eliminated foods commonly thought to trigger migraine attacks, and the other diet required patients to eat those same foods. Interestingly, headache frequency improved on both diets. This suggests that particular foods are not likely to trigger an attack, but rather that following a consistent, healthy diet may itself be therapeutic. In other words, feeling that you have control over your headaches may improve your headache symptoms. It also suggests that no single food is a trigger for all people living with migraine.

[shamebats]

There's lots of people in the tags going well my dad's uncles grandma cut X out of her diet & it cured her migraines.

If you're a chronic migraine haver please please learn to ignore all of that. There's always going to be people claiming that doing keto/paleo/gluten-free or cutting out seed oils/sugar/MSG and taking 15 different supplements cured their chronic illness and migraine is much the same. I'm not saying they're lying, they can absolutely believe that's what happened but it doesn't mean any of that is going to work for you nor do you have to try it.

[shamebats]

I had some of my worst most painful headaches while on strong painkillers, at the hospital, eating only bland low sodium vegan hospital food and getting fluids straight into my veins because apparently, the stress of surgery & recovery made my migraine disorder worse. Despite me being on Emgality. That's just what being chronically ill is like sometimes, there's not much you can do. Some of us can't self-optimize ourselves out of it, despite what every armchair neurologist & dietitian seems to think.

[shamebats]

Sometimes the stress of constant headaches & migraines is what's causing your migraines because it's an evil disorder.

[shamebats]

[labelleizzy]

If you can't get doctors to treat you while being truthful about who you are, it's just strategic to lie. 🤷🏻‍♂️