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Eds Zebra - Blog Posts
wheres the romance or “attraction” around disability? lets talk about how no im not wearing lingerie actually, its my back brace, tell me how they traced the indents of your compression socks. tell me what it felt like to be loved in a disability setting. or do you just not love me?
Good morning
I still feel like a dream
I can't seem to hold things very well and am constantly dropping things.
This is scary.
I don't feel real.
Has anyone else experienced this?
I need help.
I feel like everything is a dream and I can't comprehend what people are saying to me.
My SDIT has helped to ground me, but I still feel extremely dizzy.
I am hallucinating a small, wiggly man
I can't walk in a straight line and an so thirsty.
Am going to bed.
I don't feel real.
Has anyone else experienced this?
I need help.
I feel like everything is a dream and I can't comprehend what people are saying to me.
My SDIT has helped to ground me, but I still feel extremely dizzy.
I am hallucinating a small, wiggly man
I can't walk in a straight line and an so thirsty.
Am going to bed.
I had a doctor tell me that my hip pain, visual blackouts, dizziness, fatigue, and all my other symptoms were just essential tremors.
Tell me your medical gaslighting story.
Tell me your medical gaslighting story.
This Barbie feels like she has been thrown down a flight of stairs.
I just sneezed and my ass crack popped
Let me tell y'all about these pencil weights. They are absolutly a life (and wrist) saver. They are the only weights that I have found that are adjustable. They are also really pretty and allow me to use a normal pencil.
https://www.amazon.com/gp/product/B0BGRXY4G8/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1
Just had a nurse say she was living life on the edge by shopping in the Old Navy clearance section.
The little man has gotten out and is now stabbing my vagina.
It feels like there is a little man under my kneecaps trying to get out
Just got my ears pierced and now I'm shakey and lightheaded. On the bright side, I'm so used to needles being in me that it didn't hurt to bad.
Happy one year anniversary of this post.
Potsies listen up
PRESERVE YOUR OWN GARLIC
Chop up fresh garlic and put it in a jar with olive oil and a shit ton of salt (the garlic will help to mask some of it so you can add more) And stick it in the fridge for at least a week before cooking with it.
I had some that was preserved for around a year and it was so good.
Having a chronic illness sometimes means cutting a walk short. Other times it means chopping garlic on your bed because it's comfy there
"These hands may be broken, but they can still be thrown."
- me to @ask-and-i-answer at Disney World
I wish I could miss school because of that...
I wouldn't be there the entire year
I am not going to school today because I have “dislocated my entire skeleton” in my sleep.
I found this amazing article about Broadway actors with disabilities and thought I would share.
I am so out of spoons right now but I physically can't go home.
Living with chronic illness means learning to use your left foot to drive (while on a busy road alone in the car) because your right leg became extremely painful to move.
I just clenched my butt cheeks and my back popped.
Doctor: Here's a medication I want you to try, but it is a bit big. You might need to break it into smaller pieces so you don't choke.
Me:
"I'm okay." I say as my bones crack into a thousand pieces.
"It doesn't hurt." I respond when asked about bruises all over my body.
"Really, I'm fine." I tell my friend as I can physically feel my muscles separate from the surrounding tissue.
"I can make it." I assure my mother before entering a mall with no mobility aids.
"It's gotten better." I lie to my doctor.
bad pain day, 2023, me
alternate titles include “ouch :(“ and “my fucking hips hurt”
My toxic trait is that if I can't find anything I want to eat, even if I'm hungry, I won't eat at all.
Fuckin' Finally
FYI to sick or disabled folks and those who assist or care for them: Simplicity patterns has a new line of adaptive sewing patterns. Designs include tops with port access, clothing with velcro closures, bags and cushions for mobility aids, bibs, chemo hats, and more.
I’m excited about these because they are the first patterns of this kind I’ve seen anywhere. And Simplicity patterns are great for beginning sewists, with very clear step by step instructions and illustrations.
Patterns can be purchased here: https://simplicity.com/simplicity/adaptive/
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Have I told y’all about my husband’s Fork Theory? If I did already, pretend I didn’t, I’m an old.
So the Spoon Theory is a fundamental metaphor used often in the chronic pain/chronic illness communities to explain to non-spoonies why life is harder for them. It’s super useful and we use that all the time. But it has a corollary. You know the phrase, “Stick a fork in me, I’m done,” right? Well, Fork Theory is that one has a Fork Limit, that is, you can probably cope okay with one fork stuck in you, maybe two or three, but at some point you will lose your shit if one more fork happens. A fork could range from being hungry or having to pee to getting a new bill or a new diagnosis of illness. There are lots of different sizes of forks, and volume vs. quantity means that the fork limit is not absolute. I might be able to deal with 20 tiny little escargot fork annoyances, such as a hangnail or slightly suboptimal pants, but not even one “you poked my trigger on purpose because you think it’s fun to see me melt down” pitchfork.
This is super relevant for neurodivergent folk. Like, you might be able to deal with your feet being cold or a tag, but not both. Hubby describes the situation as “It may seem weird that I just get up and leave the conversation to go to the bathroom, but you just dumped a new financial burden on me and I already had to pee, and going to the bathroom is the fork I can get rid of the fastest.”
I weeble and wobble and sometimes fall down.
Happy National Rare Disease Day!!!
February 28th is National Rare Disease Day because the 29th is the rarest day of the year.
Can we have cane nooks in public bathrooms?
Like I was just in a library bathroom and my cane kept sliding while I was washing my hands and it was super hard to hold onto my cane and wash my hands.
It would be helpful if there were dips in the counter in-between each sink so I can rest my cane in there and not have to worry about it falling.