#eds zebra

[spookietrex]

I hate the look on able-bodied people's faces when you can't do a thing that you could do the day before. The look of disappointment, confusion, the "Oh but you could do it before. Are you SURE you can't do it?" Like yes, Brenda, I'm sure that I am in too much pain to function/move from my bed right now so going for a walk when I could move 50 feet yesterday without my cane IS too much.

[cripp-tid]

if you can't have kids for medical reasons, i love you. a lot of people emphasize the joy of children, talk about how they changed their life, etc., and that's just not possible for some of us.

so. shoutout to:

• people who can "technically" have children but can't risk the financial stress due to being already disabled/chronically ill

• people who can't get off their medication long enough to conceive

• people with uteruses who have endometriosis or PCOS

• people who can get pregnant, but have a connective tissue disorder which makes them unable to handle the progesterone during pregnancy since it causes flares (hi, it's me)

• intersex conditions that makes you infertile

• anyone who has a terminal illness

• people who've had medically necessary surgeries which caused infertility

• people with genetic conditions they don't want to pass on (me again)

• those who require IVF that's just not in the cards for whatever reason

• and many, many others

• feel free to add on

you're not broken, you have a reason for being like this. i know it's hard. i love you. it's going to be ok. 💙

[hannahcrazyhawk]

We live in a world where chronically ill and disabled humans seeking help are treated like criminals. No one should feel like they need lawyers to litigate for their bodies and minds.

[theystoleourfuture]

Something Reddit had that far outpaced other social media I’m aware of is niche groups for health/disability and I’m having serious trouble finding a replacement for them.

I have disabilities/health issues ranging from common to significantly too rare to make an in-person group for. Subreddits really filled a perfect gap between support group and advice forum, while also remaining accessible enough that if you have internet you were included.

Is there any good alternatives for actual peer-to-peer interactions and not just following an influencer/creator? Tumblr Tags are a bit empty and don’t exactly fill the same need either.

[lord-hand-me-spoons]

Just a gentle reminder that it is okay to feel jealous of your able bodied friends sometimes. It does not make you a bad person, you wouldn’t wish anyone to live with your pain, but sometimes you just wish that you got a break.

[yuribeam]

my family’s disabled. EDS and tethered cord confirmed in some but everyone has roughly the same progression of symptoms. my mom and sibling have already had tethered cord release surgery and we’re in the process of looking at my spine.

im in the process of figuring out what’s normal and what’s not, how to identify sensations, how to take care of myself, how to cope with a body that works less and less. i am also autistic, so for me, that means identifying specific feelings and sensations can be difficult

so earlier today i was woken up from a nap by my mom telling me she’s leaving for dinner with my stepdad. im always down for pad thai so i get myself up, together, and out the door in about five minutes. which is not really enough time to assess how my body is feeling, which is difficult for me anyway.

before dinner im already feeling a little lightheaded and clammy and i figure i just need to eat, which i do, and it is in fact worse. i excuse myself for the restroom, thinking it’s because my stomach’s been weird, don’t feel better. silently rushing my mom to wrap up chatting with my family bc i feel like i need to be home. make it home, curl up on the recliner, feel some sharp pains along my spine, watch a little star trek, eat some leftovers, yknow 

then my mom comes into my room before bed and says that she recognized how i was feeling at dinner. cold but feeling overheated, clammy, pale, almost a bit dizzy, hungry but not hungry, needing to put my head in my hands and shift around, uncomfortable but unable to pinpoint what's wrong. she says, i've felt like that a lot too, for decades, and i always think did i eat enough protein did i drink enough did i do something wrong to trigger something i can’t recognize, and actually?

i think it’s just pain. 

which is currently kind of blowing my mind a bit to realize, that although i know people with chronic pain will not recognize their pain the same as able bodied people

i am more likely to feel the side effects of pain than the pain itself 

put another way, i am experiencing my body reacting to pain whether or not i feel more or less than usual of what i think of as pain (sharp, shooting, twinge, spasm, pointy ache..).

I thought of general pain or the constant background pain as just a low ache that maybe comes with some stiffness and soreness, but I am feeling it through other senses and manifestations as well

so im really rethinking about how to recognize and predict and categorize and classify pain. it made me think of the emotions wheel, which you probably recognize a version of if you’ve had therapy 

and i think something like this with words for physical sensations like restless, queasy, tight, collapsible, unsteady, foggy, tensed, and probably better words i’m not thinking of, would be a helpful start to identify how to communicate what is going on with my body 

is this relatable to anyone? how do you recognize and communicate feelings in your body that you’ve gotten used to but are not medically “normal”? what words would you put on the sensation wheel? 

[chronicallye]

This Barbie feels like she has been thrown down a flight of stairs.

[scretladyspider]

Hey y’all. I need to request mutual aid. Due to my joint hypermobility (likely undiagnosed EDS, I’m diagnosed with joint hypermobility but tbh I match a lot of EDS criteria, but I mean it took them like 27 years to even diagnose me with the joint hypermobility even tho I constantly had ankle sprains growing up, anyway) I’m unable to do heavy lifting and need to hire movers. I need help to raise $1800 by July 21st.

Between needing to start new utilities, paying this and next months rent at the same time (a requirement by the leasing company), the pet deposit, and the last month of rent on my current place, plus everyday things that naturally come up like gas and groceries, I just do not have the funds to do this without help. My family already helped me with the security deposit, which I will be paying them back for, but because of this they do not have the funds to also help with movers. Im $50 of the way to the goal already after sharing this on Twitter, so I’m sharing it here too.

Anything helps. Thank you. 💜

Please reblog. 💜

venmo- secretladyspider

CashApp - secretladyspider

PayPal

[autispec-hours]

yknow that thing where you’ve been on a specific medication for long enough that your brain doesn’t really remember what the symptoms were like before , and it tries to convince you to stop taking it cause ‘ maybe you don’t need it anymore , you feel fine right now ‘ <- currently medicated while this thought is happening

that is the devil talking

edit: not literally the devil

[of-dew]

happy EDS awareness month, for my next trick i will snap crackle pop

[spookietrex]

I am valid even when my small victory is that I took my meds that day.

[edsandco]

Shout out to my Occupational Therapist for:

Trading fun/weird facts with me.

Helping me out with using my metalsmithing skills to make myself ring splints and for being willing to combine the brace making stuff she has with the metal pieces I'm making to create what will hopefully be the perfect brace for me to wear while I crochet.

Never batting an eye at my weird goals or hobbies.

Listening to me!

I called my right arm my hammer arm today, and she not only accepted that statement but knew what I meant.

Already alerting the physical therapist I'll be seeing in late October to the fact that they need to work together to figure out getting me a wheelchair that fits better and that has a good back and cushion.

Trying to get insurance to start covering my compression wear so I can get properly fitted good quality gloves & sleeves.

Going down rabbit holes with me but also getting me back on topic eventually.

Making OT fun.

For not judging me for talking to someone else with EDS in the waiting room for like 20 minutes after my appointment.

Not being mad that sometimes IBS and/or ADHD make me late and for being understanding about the 2 last minute cancelations I had after I was covid negative but still struggling too much with fatigue to drive safely.

Giving me movie recommendations.

Lastly, for being great at her job and helping me meet objectives we set.

She's great even though penguin x-rays now haunt my dreams.

[milkcritter]

y’all i came across the most amazing art on facebook this morning

im in a bunch of EDS facebook groups and an artist posted a study of their hand in the Signature EDS Position™ and i’m obsessed

i remember taking a figure drawing class and doing drawings of our hands for homework. the assignment was to put your hand in an “interesting position” and draw for 6 hours. During critique, my professor had me put my hand in the position I drew it in to check my proportions, because it didn’t look like a possible position to her. she was shocked when i put my hand there with ease.

credit to aislin.sparrow on instagram

this study is not just incredibly technically well done, it shows abnormality in figure drawing, something we don’t get much of

it’s so nice to see your body in art. so much love to this artist and any disabled artist out there

our bodies are worth drawing

[compost-intraining]

I have a theory that the only reason doctors don’t take POTS and EDS seriously is bc they’re most common in women. Like I guarantee if it was most common in men they would be talked about so differently

Edit: would like to clarify that EDS is diagnosed more in women and tends to have more severe symptoms, not necessarily more common. But my point still stands

[lord-hand-me-spoons]

It is okay to not always be grateful for what you do have in your life. It is okay to not always focus on what you can do.

Your life has ganged and you are allowed to feel sad. You are allowed be angry. You are allowed to grieve your old self. You are allowed to hate the situations your chronic illness puts you in.

But you also have to remember that your life has value, and that you are worthy.

[chronicallye]

Tell me your medical gaslighting story.