Eds - Tumblr Posts
Mystery Nausea really starting to feel like eat grapes outside in grass...
She had Ehlers Danlos Syndrome.
and I am TIRED of pretending like she didn't! she's who I had as chronic pain representation before I had characters like victor from arcane. SHE was the first time I saw someone with a "normal" body uncontrollably writhe in pain, who could barely walk sometimes because of it, who had their every waking moment effected by it.
"Every cell in my body is torn apart and stitched back together, over and over every day" This line, the delivery of it, the combination of it with everything we've seen of her, I felt it. I have been feeling it. I will continue to feel it every day of my life. Sure she might have fictional illness number 34462398573948 but if that's the closest we can get I'll take it.
Is she a villain who falls under the disability being the motive for villainy trope? Yes. but she is at least sympathetic and they spend enough time with her pain to make it relatable. Do I love that she's a villain? absolutely not, but I didn't really get a choice in picking who I see myself in. They don't make characters with pain like this, at least not enough for me to cherry pick my favorite. Genuinly the only other one I can think of right now is Viktor from arcane, who (spoiler alert) IS ALSO A VILLIAN even if he's better representation / even MORE sympathetic than miss ma'am over here.
The relatability of characters that are stitched/sewn/stapled/ball-jointed etc together as someone with Ehlers Danlos
Every single character of this vein has eds TO ME! and they have been vital representation in a world that likes disabled people more when they're metaphors.
I was wondering if anybody else with eds also found solace in these more literal interpretations of what it means to be physically falling apart at the seams?
Temperature regulation issues suck so much and are so weird because it does not matter how many layers I put on, if the skin is exposed it will be cold. My fingers are like a full 20 degree difference than my wrist that's covered by my jacket. just move the warm blood over there omfg
Hi, my niece, Sienna, is currently fundraising for a service dog due to her multiple disabilities (EDS, POTS, CRPS and more) that limit her mobility and regular everyday function. She is going through the nonprofit organization 4 Paws for Ability. 4 Paws has provided a secure online platform where you can conveniently contribute with options like PayPal, Venmo, and regular credit/debit.
The total cost for a service dog is $20,000 but sadly it is not covered by health insurance. I understand that times are tough for many, and any help you can provide will be deeply appreciated. Additionally, I kindly ask that you share the donation link with your family, friends, and other socials to help us reach a wider audience.
I acknowledge that some people really like diet soda or zero sugar soda and they rely on them for feeling healthier but I have a chronic condition and a rare disorder that means if I drink a diet soda I feel like losing my lunch.
● I once accidentally drank a zero sugar monster and fainted off a platform
● I once drank a couple of those packets you mix into water not realizing they claimed to have no sugar and fully lost the ability to lift my arms or even move for several hours (terrifying)
● recently I drank a sip of someone's diet root beer because I really wanted root beer and felt like I was being stabbed in the chest for like 3 hours
This may be an American problem but sometimes I just wanna not feel gross just for eating and drinking things
I have a drs appointment on Tuesday to hopefully get evaluated for hEDS yay. I Hope i can get a preliminary diagnosis from her i stg. It would explain so much and then maybe just maybe I’ll be taken more seriously by other docs. Like seriously it would explain SO MANY of my issues like nearly all of them I stg
A paraphrased conversation between my mom and I
Me: “I couldn’t go to class today because my disability is causing my joints to be too unstable for what we are doing today plus my pots is really flairing”
My mom: “ you know I don’t see you as disabled, you should really stop thinking about disability and start thinking of ability or different ability”
I finally got my custom knee braces!!!! I’m so fucking happy I just wish it didn’t take this long to get it authorized. I’m so lucky too that my insurance covered them because otherwise they’d be ridiculously expensive. They were 3D printed to match my legs so they fit so perfectly. Getting used to them is hard because they make my leg muscles have to actually work rather than just going along for the ride and my joints don’t hurt as fast during the day. Walking is so much better now. I’m so fucking happy omg. I’m so thankful to my sports medicine doctor who wrote the letter that was hugely responsible for getting my insurance to approve them.
Now I need custom fit braces because of the significant size discrepancy between my thighs and my calves. Every pre fabricated brace I have tried or wanted to try didn’t fit me in so many ways. Either they didn’t go big enough to fit my thighs or they fit my thighs but were too big for my calves or they wouldn’t sit right on my knees or so much else. But I finally have amazing braces that fit perfectly and actually stay on my legs and for that I am so thankful.
These braces have made such a big difference in how active I’m able to be and how I’m able to do physical therapy. With these braces I can actually get my knees and legs closer to where they need to be without the same kind of pain and instability that I have without them.
Now I’m working on getting a disabled parking placard because while walking is easier it’s still hard because of my joints and fatigue and also because of my POTS and just everything else that’s wrong in my body. So I have an appointment with my gp to work on the paperwork and then I’ll go from there to apply. I’m so happy that I’m finally able to get even just some of the help I need and for that I am so grateful.
sick and tired of being sick and tired
sick and tired of being sick and tired
Pixel flag divider requested by @mossfrogandratmushroom !
Disability pride flag
I hope you like it :)
Suggestions, tips, and requests are welcome!!! I don't do any NSFW but I'll create for any fandom. Feel free to use this for something if you want. A like, reblog, or follow if you do would be appreciated!
~Parker
Two years ago I was a ballerina. Classes two-three times a week. I loved it. then I had to quit because I developed very painful bunions that were only described as moderate by medical staff. Fast forward to today, where I can’t even do simple things like walking or bike rides without being completely out of commission the next day. I’ve missed so much school because of my disability. I have no mobility aides. Oh yeah, and my little sister resents the fact that it gets me attention from our mom. Yay.
Tfw when the teacher’s get to know you questions are getting a littleeeee too personal, is this a mental health screening or getting to know me pick one.
Image Description: A man looking exited next to a panel that reads, “The doctor thinking they’ve finally found the root of my symptoms”. The same man appears in the next panel looking shocked and it reads “‘test results normal’”.
Sleepy hamster is best hamster. Chew ze carrot!! Ride ze shoopuf!! ^_*
Meals and Snacks for Spoonies
We all know how the cycle works. We feel depressed, so we don’t eat. Or we eat crap. This makes us feel like crap, which makes us feel even more depressed, which makes us eat even more crap or keep an even more unhealthy meal schedule. And so the cycle continues.
Here’s a few food and meal hacks for spoonies that I’ve found have helped me actually stay healthy and eat regularly even on days when I can barely get out of bed, be it because of depression or anxiety or chronic pain - no yoga, no expensive produce, no nutritious meals that take three days’ worth of effort. Taking energy level and budget into account, let’s get into it.
Fruits and vegetables that stay fresh for a while and require no peeling/chopping/hassle Choosing fruits and vegetables that will both keep longer and take minimal effort is a great way to try and stay healthy while in a bad state. The following are also pretty cheap. No cooking necessary, either. ✿ cherry tomatoes ✿ seedless grapes ✿ apples ✿ carrots (baby or full) ✿ broccoli (pre-cut) ✿ snap peas ✿ pears And if you have the budget, raspberries, blueberries, peaches, and plums are good, too.
Anything canned Foods that usually take a while to make or are sold at higher costs elsewhere are easy to find in the canned food isle. ✿ soup (“chunky” soups have lots of meats and vegetables to nourish you too) ✿ fruits and vegetables (look for minimal sugar content; don’t have to microwave) ✿ pastas ✿ beans (don’t have to microwave) And anything else in the canned food isle that catches your eye.
Nuts Nuts are a great way to get some of those important nutrients without having to splurge on or have to cook meats. They’re also easy to keep at your bedside for executive dysfunction. ✿ peanuts (cheapest) ✿ cashews (best for people that aren’t fans of nuts in general - soft, not a strong flavor) ✿ almonds (very vitamin-rich) ✿ mixed nut packages And any other nuts that you enjoy. Look for lightly-salted nuts so you don’t get too much salt in your system. If you’re not a fan of nuts, get cinnamon-and-sugar dusted nuts. Keep a bag or jar of nuts in your bedroom or at your bedside for difficult days so you don’t resort to binge-eating or skip eating entirely.
Frozen food and microwave-meals I’m sure you know the drill here. Microwave meals don’t need to be transferred nto another dish required as with canned foods. They also offers a wider variety of meals, often more balanced, than canned foods do. Frozen foods have a lot of the same traits as canned foods: stay fresh for a really long time, require minimal effort, but usually have to be dished. ✿ frozen waffles ✿ frozen breakfast sandwiches (easy access to eggs and meat) ✿ no need to list off microwaveable meals here - pick out whatever suits your tastes and your budget. Try not to aim for the nacho cheese corn dogs or double trouble burgers here.
** Meal supplement shakes ** These guys save my life sometimes. On my most horrible days, I reach for them. They’re literally meals in a bottle that you can either sip over the span of a few hours if your tummy isn’t feeling right or you can chug in a couple of minutes if you need a quick meal. Downside: they’re not on the cheap side and don’t stay fresh as long as my other options do. I think they’re totally worth it, though. ✿ my therapist recommended Ensure™ to me. I swear by them. Tastes like real chocolate milk. ✿ stroll down the meal supplements isle and pick out whatever looks most appealing to you. Tip: pour it into a wine glass to feel fancy if you need a morale pick-me-up.
Packaged snacks Stay good in the cabinet for months. I keep a pack of crackers by my bed all the time in case I find myself bed-ridden. ✿ cheese sticks ✿ granola bars ✿ fruit snacks ✿ individually-packaged lunch meat ✿ yogurt cups ✿ fruit cups ✿ packs of crackers ✿ any other packaged snacks you find appealing. Try to steer clear of individually-packaged ice creams or cookies if you struggle with binge eating. Go for a tub of ice cream or package of cookies instead for better habits and a lower cost.
Foods you can make in advance and eat for a few days You shouldn’t live exclusively off of these foods for days, but they make great meals if you have a high-energy day and can make a batch. ✿ rice (storage: let cool, wrap tightly in cling wrap, keep in fridge.) ✿ pasta (boil some water, chuck the noodles in, store it. Storage: let it cool, put it in a bowls/container, cover, refrigerate.) ✿ couscous
Easy-access starches Stay fresh for a while, pretty cheap if you don’t buy a fancy brand. ✿ loaves of bread (not sandwich bread, I’m talking those big loaves) ✿ bagels ✿ cereal (sugary or pure granola - you do you)
By the way, thank you all for your support lately! I hope I’m not being overbearing by repeating how greatful I am over and over again, but I’ve never really had encouraging people in my life before. It means a lot.
current least favorite thing about my latest chronic illness flare up is how boring it is like I'm stuck lying down in bed and my brain won't let me do anything
like I was going okay I can't go into uni but I guess I can write my papers but nope not an option so then I was like well I can write fic but no also can't do that so then I was like okay let's watch the eras tour movie and I only got half way through that!!!
the point here is I'm bored and have most of the next chapter of my Tess lives story written but it's all disconnected scenes that I need to join up and I want it done and it's not :(
5 years
I recently had someone ask me what I wanna do in five years from now; where I wanna be with my life. They told me it should be easier to come up with it and to just think of what I wanna do with my life, but it’s really not that easy when you’re living with a chronic condition and you have to think about how that condition will affect everything you do. If you would asked me maybe three years ago before I found out about my condition and the limitations I have to have because of it, I would’ve told you I wanted to be a veterinarian. But then I had to come to the unfortunate realization that that was not possible because of my condition. It’s just so frustrating when someone tells you that you can still dream of these things, to just make it more realistic, when realistically I cannot do them.
Drawings-
for my fellow Spoonies, you know those things that feel overwhelming/impossible?
brushing your teeth for 30 seconds is better than not at all.
going for a 5 min walk is better than not at all.
writing two sentences is better than not at all
washing your hair once every second day is better than not at all (sometimes I just wash my hair in the bathroom sink if I don't have the energy to shower).
eating two mouthfuls of dinner is better than not at all.
wiping your body down with a damp cloth is better than not showering.
sitting on the grass just to get some sun is better than lying in bed all day.
sometimes you just gotta tone the Thing down a little.