fibro-faerie

[fibro-faerie]

Hey y’all!

I wanted to start a little support group for us spoonies— the Chronic Annoyance Gang.

Come join me to vent about all things chronically annoying 🤣

#chronic illness #fibromyalgia #ehlers danlos syndrome #chronic fаtiguе ѕуndrоmе #chronic migraine #pituitary adenoma #gastroparesis #type 1 diabetes #crohns disease #chiari malformation #pots syndrome #dysautonomia #cystic fibrosis #complex regional pain syndrome #crps #superior mesenteric artery syndrome #smas

[fibro-faerie]

besties

[fibro-faerie]

Me: please body, please just regulate your temperature for five minutes, please

My body: 🖕🏻❄️🧊🥵🔥🖕🏻🖕🏻🖕🏻🔥🧊❄️🖕🏻🖕🏻🔥🖕🏻🥵🔥🧊🧊🧊🔥🖕🏻🖕🏻🔥🥵❄️☠️

[fibro-faerie]

Whoops

[fibro-faerie]

something you may need to hear today:

if you’re young and you have a chronic illness, you are most likely in a different stage of life than your friends. Not a better or worse one, just a different one, and that is okay.

[fibro-faerie]

i’d like to exit

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Patient: *has a bunch of different symptoms without a clear cause*

Doctors on medical shows: right I’m ordering every single test or scan available, I want a specialist from every department paged to take a look at this case and I want this group of interns looking into every possible rare disease that this patient might have. We won’t let this patient leave until we’ve gone above and beyond to help them. Let’s go people!

Doctors in real life: lol idk the three basic blood tests I did came back normal so it’s probably just in your head or something.

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my body is a group project and no one is doing their part correctly

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I have never wanted a shirt more in my life oh my God.

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Thanks POTs

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I fucking hate it sososososo much when people tell me that I am "brave" for living with my disability. Tf was I supposed to do? Kill myself so I wouldn't have to live with my illness?? Instead of saying dumb shit, ableds should pay me.

[fibro-faerie]

Having a body is overrated. 2/10, would like to become a ghost, specter or phantasm

Ok but seriously why am I Brigid? 😂

Her whole existence is just such a mood

#lycanthropy and other chronic illnesses #brigid #priya #chronic illness #ghost #phantasm #specter #current mood

[fibro-faerie]

This is your daily reminder to not be ashamed of making your life easy for yourself.

Cut your food into small pieces, make the font size 30 on your e book, use straws to drink, get a pen that’s comfortable to hold, take more naps, walk slowly, eat another cookie, buy velcro shoes, re-watch the part you couldn’t understand the first time, write things on your hands so you don’t forget it… whatever you want and/or need

Don’t let anyone tell you how you should be doing things. We don’t need to prove each other anything

[fibro-faerie]

hierarchy of disability mobility aids

[fibro-faerie]

TMJ STRETCHES!!

Hey y'all!!

So I suffer from ouch-clicky jaw syndrome (TMJ pain), and I had no fucking idea that there are stretches for your jaw that can help!!

I ripped the stretches directly from this site and put them on a page like this so I could have a reference sheet to put on a wall while I'm at work-- but I highly recommend flipping through the site. It explains each stretch a little better than the shorthand I have up here.

Also!! I am not doctor-- so consider consulting one about these exercises before attempting. But a good rule of thumb is, IF IT HURTS, STOP!!! Your TMJ is a delicate little socket, and you've only got one set!! So be careful with yourself!!

[fibro-faerie]

Thoughts on Separate Tides and Allergen Representation; an Essay

“No appleblood. I spent the money on gryphon eggs for Luz. There’s not a lot she can digest here, so I make sure I have her favorites around.”

“Because you stuck with me, you lost your magic! You almost got turned to stone, and now you can’t even afford your appleblood because you’re worried about what I need to eat!”

This episode had a very surprising, and very sweet display of allergen representation. I really appreciate Luz’s issues and anxieties in this episode. While it’s presented in a fantasy way, when she explains how upset she is about her food restrictions, it speaks to a real issue affecting people with allergies and digestive problems. As someone with a food allergy growing up, the moments really spoke to me. I have Celiac Disease, which means that my body can’t digest gluten, a protein in wheat. I can eat the stuff physically, and the symptoms aren’t obvious like a peanut allergy. This makes it difficult to detect. The way it manifests is that my stomach can’t digest the protein. It will go through my small intestine, and tear up the lining of the organ that absorbs food, and what remains of the lining has a hard time absorbing other nutrients, causing me to essentially starve. These symptoms don’t appear immediately, taking days, weeks, or even months to register, making it even more difficult to detect. While gluten is something health nuts are obsessed with lately, it is a very real threat to people with my condition. My food can’t share the same plate, can’t share the same space; if they even so much as come into contact I have to scrap the whole meal just for safety’s sake. When I was younger, before I was diagnosed, I didn’t grow an inch for two years because my body had gone into maintaining the bare minimum needed for survival. My bones think they’re younger than they actually are. When I was diagnosed and I recovered, I grew a lot. What spoke to me in this episode was Luz’s discomfort and distress at Eda’s money troubles when it comes to food. It wasn’t a joke, it wasn’t mean, it was really meaningful, it’s a fact of life. It’s much like how Eda’s condition was treated in the first episode she appeared, just a part of life. Gluten free food is expensive, finding places that won’t actively poison me is exhausting, and I’m constantly worried about cross contamination. Even a few crumbs can be a problem. Frequently I will feel like a burden, like I’m being pedantic even though this is vital to my health. I cannot live off food with gluten, I will die. Yet it still feels as if I’m a burden. I’m right there with Luz; hearing people having to talk about our food sensitivities, and having to accommodate us, even if it's in a loving way like Eda said, is upsetting. I’m also going to guess that like me, Luz is also a picky eater even amongst stuff she can eat. On school trips, I always needed special treatment; it tended to be something that I don’t care for even if it was gluten free, or dry sandwiches I brought from home while my peers chowed down on pizza. I remember the looks everyone gave me. I have to explain to every single restaurant I find my condition. Even if they’re understanding, it’s a pain. Luz has been confirmed to be neurodivergent, and I am right there with her as well. It takes an immense amount of mental energy to find restaurants, to find the right menus, find the ones with the right accommodations. Food can’t even be cooked in the same fryer if I want to avoid cross-contamination. It’s terrifying and upsetting to constantly have to go to the front of the line and ask for what feels like conspicuous special treatment. As a neurodivergent person, social anxiety makes this so much worse. I constantly fear the cooks are cursing me under their breath for inconveniencing them, I fear that people behind me are whispering and that any moment a hand will land on my shoulder and demand I get to the back of the line with everyone else. Sometimes I will get food that I simply don’t like, or hasn’t been cooked right. Asking to have it fixed is terrifying, and I fear the people around me even more. Luz may not be super poor on Earth, but she voiced a lot of anxieties and frustration that people like me have. I'm from a well off family that could afford the additional expense of gluten free food, but I can’t imagine what a nightmare it is for real families who can’t afford gluten free food, or who can’t even

afford a diagnosis. To add insult to injury, many people will mock or dismiss us as being liars, pedantic, or just picky. It is a common thing to mock people with gluten free preferences; the Angry Birds movie made fun of it. I hear people complain about how expensive the food is even if they don’t have to eat it. People will offer me bread even after I explain to them what it will do to me. Dennys seems to have adopted a chain-wide proclamation to refuse to accommodate gluten free people. I have not eaten there in three years, because we experienced serious food problems in restaurants in Virginia and Vermont. Virtually every time I entered a Dennys three years ago, I would ask for a plate of plain and simple chicken that normally comes with toast, and I ask them to remove that; somehow, they would always screw up the order by putting glutinous bread right on top and ruining the whole meal. Yes, we are that sensitive to contamination. If it even touches the food the meal is ruined. Once, it was understandable because the waiter had been awake for eighteen hours. The other times were not. I saw the waiters argue with the other staff, I had a manager once come out to explain my own disease to me, even as two pieces of toast just sat there stewing on my chicken. That feeling of being a burden, of hearing people argue about trying to help you, stings very much. Some people will assume that we just don’t like wheat; I’ve heard horror stories of people trying to “prove” someone didn’t have Celiac Disease by secretly putting it in their food. The fact that we don’t go into anaphylactic shock when we consume it makes this a common problem as it leads them to assume it’s not an issue. It being a fad diet has also made my life worse; I have to constantly specify that I am not just gluten free, that I have an actual medical condition. I have to carry cards in my wallet to explain the situation. It feels like the world around me conspires to keep me from being healthy. And it feels like the world hates people like me for it. The best representation I’ve ever gotten for Celiac Disease was a CollegeHumor sketch. Most of the time, allergen representation is a joke, even if it’s informative and not meant to be mean. The Owl House breaks that trend with these two little exchanges. “No appleblood. I spent the money on gryphon eggs for Luz. There’s not a lot she can digest here, so I make sure I have her favorites around.” “Because you stuck with me, you lost your magic! You almost got turned to stone, and now you can’t even afford your appleblood because you’re worried about what I need to eat!” Luz’s snap at Eda about her food sensitivities is something I feel. I don’t often get allergen representation like this, especially any as loving and kind as this. Even to family, who love and support me, I can feel like a burden, as if there’s something wrong with me that is somehow my fault, and not the fault of a genetic disease dating back thousands of years. It’s deeply upsetting and frustrating to experience this. No matter who it comes from, it hurts a lot. I’m glad The Owl House captured this feeling perfectly. It’s good to know I’m not alone here. I’m glad to see representation where facts of my life aren’t seen as a joke.

[fibro-faerie]

• this user has GI issues •