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sniiboo · 1 year

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Today is rare disease day let your loved ones with a rare disease know they are loved. In medical school doctors are told "When you hear hoof beats think horses not zebras." This means to think of a more likely cause over something thought of as farfetched or rare. This makes it quite hard for anyone with one of these diseases to be heard and taken seriously as they are often shoved aside as hypochondriacs. I remember always being called one by everyone including friends and family. I remember starting to believe them. I remember being afraid of stairs for a long time because I fell down them, I remember these incidents leading to me being called clumsy. I remember being in physiotherapy in grade 1, I remember wearing high tops shoes because my ankles were "weak" and gave out. I remember my parents thinking I faked stomach aches because I liked the taste of Pepto. I remember still falling down stairs as a teenager and being told I was doing it for attention. I dont need to remember the stigma and comments like being called lazy because I still face them.. but mostly I remember the struggle to find out what was wrong with me and the relief of finding out I wasnt crazy because Not everyone gets to win the battle of seeking answers. . . . . . #eds #ehlersdanlos #ehlersdanlosfighter #edswarrior #ehlersdanlostype3 #edsdiagnosisstruggle #raredisease #rarediseaseday #rarediseaseawareness #edstype3 #invisibleillness #spreadawareness #invisibledisease #hypermobility #hypermobilitysyndrome #hypermobilityspectrumdisorder #hypermobileehlersdanlossyndrome https://www.instagram.com/p/CpOvh_5D1XH/?igshid=NGJjMDIxMWI=

#eds #ehlersdanlos #ehlersdanlosfighter #edswarrior #ehlersdanlostype3 #edsdiagnosisstruggle #raredisease #rarediseaseday #rarediseaseawareness #edstype3 #invisibleillness #spreadawareness #invisibledisease #hypermobility #hypermobilitysyndrome #hypermobilityspectrumdisorder #hypermobileehlersdanlossyndrome

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benditliketoni · 4 years

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Just a reminder

Do not apologise for listening to your body.

You take that nap.

You cancel those plans if you don't feel well enough to go.

Self care is so important!

#Chronic illness #Spoonie #Spoonie strong #Ehlers Danlos syndrome #EDS Warrior #ehlers danlos syndrome #chronic illness #spooniestrong #chronic pain #edswarrior #ehlers danlos #spoonie strong #chronic fatigue #spoonie #spoonie problems

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icedgroove · 2 years

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xmas is hard for me not only because of splintered family relations but i can never get anything i WANT (like a new computer or top surgery) because i'm always in NEED. i still don't have clothes that fit and haven't had a winter coat or boots in 5? years (i live where it can get cold and snow a lot). i need braces for my legs, specially made, and compression braces for my arms, likely not covered by insurance. it's just like "choose one if it's not too expensive socks? YEP"

shit i DO need compression stockings for POTS lol

#personal #venting #disability #post-orthostatic tachycardia syndrome #elhers danlos syndrome #dysautonomia #poverty #income disparity #i could never go on vacation or own a house or anything like that #i'm sensitive to people flaunting what they get without self-awareness #nothing has made me want to die more than being in poverty because i know there's no way out #xmas just reminds me of that #i need to stop before i start spiraling into disability talk #i need a hug #mcas #fibrowarrior #edswarrior

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disabledprincesses · 4 years

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Half my time as a sick person is trying to convince people that I am sick

And the other half is trying to convince people that I'm not that sick

#autism #disability #disabled #spoonie #chronically ill #chronic illness #chronic fatigue #chronically sick #pots #edswarrior

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post-breakup-thoughts · 3 years

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« Burglar »

You didn’t ask, you took.

Feeling so fucking entitled.

Who do you think you are ?

No one ever says no to you.

You never face consequences.

You tried to rob me but couldn't take away what matters the most.

I still belong to myself, I always will.

Shame is on you burglar.

- L

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ging-zebra · 4 years

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What’s it like to be high functioning and chronically ill? Probably not what you think unless you’ve been there.

Being chronically ill has a lot of baggage and a lot to think about all the time. Your brain I constantly thinking and calculating of how to do every single small task in the most comfortable way for the least amount of potential pain. On top of that, I also carry OCD. OCD isn’t being a neat freak or like things in color order. It’s a compulsive constant stream of thoughts that repeat and repeat until you act on them.

I work 40 hours a week, so physical therapy, and do other forms of exercise such as playing casual basketball, spikeball, corn hole, tennis, biking, etc. There are days when I have severe muscle aches throughout my legs, on top of extremely loose and painful joints, to where I can barely move — but I’m still working. It’s an unbelievably task to bear, but I’m one of the lucky ones who is even well enough to work!

My best advice is to make it a point every second of your day to make yourself as comfortable as you possibly can. DO YOUR PHYSICAL THERAPY. Don’t listen to every doctor, most of them are wrong when it comes to EDS. I have heating pads, I’ve packs that Velcro around my legs, compression gloves, tons of blankets, a memory foam pillow and mattress, in-soles, and weighted blankets. Do what’s best for you. Drop people, even family, who don’t believe your pain and health are real.

Feel free to message me if you want to talk more! Only about chronic illness.

Stay safe loves 💕

#zebra #spoonie #edswarrior #edsucks #edsupport #eds zebra #hypermobile eds #eds problems #ehlers danlos #ehlersdanlosgrrrls #ehlers danlos life #ehlers danlos type 3 #ehlers danlos problems #ehlers danlos zebra #ehlers danlos syndrome #hypermobile ehlers danlos #chronically ill #chronic illness #chronic pain

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studiosarahdavies · 4 years

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Look what just arrived!!!! They are so shiny and lovely! Much bigger than I imagined (even though I did a mock up to scale 🤣). So exited!! We had a week long online launch extravaganza for science week - interviews with each of the awesome women in STEM the characters are based on , and an illustrator talk by me.😁 You can videos of all the talks under the “meet the characters” tab on pippaanddronie.com (direct link in my bio). Even though we’ve officially done the launch I feel the urge to have a little Perth Party too! So proud to have met this goal. Now on to the next one! #bookunboxing #firstbook #childrensbookillustrator #ididathing! @scbwi_west #kickinggoals #edswarrior #chasingdreams #sciencecommunication #kidlitartist https://www.instagram.com/p/CEtAXCPjRFG/?igshid=1wn9g12lieo6m

#bookunboxing #firstbook #childrensbookillustrator #ididathing #kickinggoals #edswarrior #chasingdreams #sciencecommunication #kidlitartist

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writingfeedsthedarkestones · 5 years

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Me: Why does my finger hurt?

Finger: Sickening crack

Me: Oh. That's why.

#chronic illness #eds syndrome #chronic pain #ehlers danlos syndrome #eds #edswarrior #eds zebra

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findyourrare · 4 years

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“ i just want to say I’m sorry for anyone who wasnt believed... i don’t know what turn my life would have taken if people didn’t believe me when i said that something is happening to me” - @taylorswift Miss Americana after the one year anniversary of her sexual assault court case

imagine if every minute of everyday people didn’t believe you; family, friends, work and even your doctors become deaf to your words because of how little they take your account seriously

Think about the turn your life would take..

then go hug someone with an invisible disease and let them know you believe them. Because your moment of humanity may save them from the mental and physical turn their life has already taken

#swifties #thisis30 #zebralife #zebraherd #thegreaterthanproject #support #findyourrare #zerbralife #spoonie #thisisrare #butyoudontlooksick #edswarrior

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halleehalfgallon · 5 years

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I have been lethargic my entire life and always believed the lie that it was because I was lazy and had no work ethic.

I struggled in school because I couldn’t focus on things that didn’t interest me and just generally could never seem to think straight. I always knew that it wasn’t a lack of discipline or a desire to rebel against my parents (I was homeschooled), but I was still told I wasn’t trying hard enough.

we have known about my hEDS since I was a kid, but all that it explained back then was my “growing pains”, subluxations and bizarre flexibility. it was never really seen as a problem, just a fun fact about my body.

I’m one of the “lucky” ones. I don’t complain much because I usually feel quite normal. I think my normal is other people’s aches and pains, but because it’s what I’ve always known, I generally feel fine. I’m not as limited as a lot of others with my disorder. I’m thankful for this, even though it somehow delegitimizes my pain on really bad days.

I’ve had two really bad weeks and I feel like I can’t talk about it. I feel like it’s all or nothing sometimes. you’re either unwell all the time or you never are. you’re not allowed to be okay most of the time and then magically unwell, because then you’re attention seeking or playing the EDS card whenever it’s convenient.

I don’t want to lose my identity to hEDS, so I keep quiet much of the time. but I’m struggling to lay down the law for other people and make my limitations clear. I’m falling asleep sitting up, my body hurts, I’m creaky and my shoulders are loose and achey and my brain is laden with fog. does anyone feel like you don’t have it as bad as some others, you’re generally able-bodied, you can still have a normal life until all the sudden you can’t? does anyone else not want to have to make everything in their life about what they SOMETIMES can’t do?

my two brothers also have hEDS and they are nearly asymptomatic, which really just makes me look all the more dramatic when I have a flare up. I feel like everyone thinks I’m a hypochondriac. is anyone else out there?

#ehlers danlos syndrome #eds #edswarrior #ehlers danlos #ehlers danlos type 3 #hypermobile ehlers danlos #chronic pain #brain fog #okay to reblog

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benditliketoni · 3 years

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I hope everyone had a good Christmas! I’m so sorry I haven’t been posting or reblogging.

I gave birth to my little girl on the 25th November at 23:38pm. I was induced at 37 weeks due to her not growing and she entered the world weighing only 5lbs 3oz. It was a pretty traumatic experience all in all as I ended up with a c section under general anaesthetic.

Having a newborn when you have EDS has been a definite learning curve! I’m exhausted in a way that I never knew, but she is so worth it.

She is 5 weeks old today and I’ve never been so in love.

#spoonie #chronic illness #ehlers danlos syndrome #chronic pain #spooniestrong #edszebra #edsstory #edslife #edswarrior #ehlers danlos

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stuartette · 5 years

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Physically and mentally healthy people™️:

You’re so lazy! Get up and do something and you’ll feel better. Help us out it’s for the better.

Physically and/or mentally ill people :

#disabled #memes #eds zebra #edswarrior #major depressive disorder #schizophrenia #disabilties #disabled memes #PTSD #hEDS

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disabledprincesses · 4 years

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Why Diagnosis is Important

One thing that is way too common among those in the Chronic Illness community: thinking you're faking it.

I have thought I was just looking for attention when I was being weird/quirky. I thought I was just not a good student, and that I was lazy.

Then I got diagnosed with Autism.

My therapist said that all the things I thought were MY fault, weren't. Of course, they are things I can work on.

But they weren't problems that I made by CHOOSING to create them.

A few days ago, my legs decided to stop working. I couldn't move them for 10-15 minutes, and it took me way too long before I could walk or move them on my own again.

And the entire time I was thinking: I'm tired. I must be doing this on purpose. Wow, I'm being dramatic.

The thing is, if you're faking it, you wouldn't choose this. You wouldn't choose to stay at home in pain. You wouldn't choose to use mobility aids. You wouldn't choose to have alters, or trauma, or anxiety, or awful fatigue.

Getting a diagnosis, is having someone come up to you and tell you "it is a scientific fact, that you are not faking it"

So yea, diagnosis is good.

#autism #actuallyautistic #autistic experiences #disability #disabled #actually aspie #aspergers #aspie #spoonie #potsie #edswarrior #wheelchair #fibromyalgia #depression #anxienty

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post-breakup-thoughts · 4 years

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Afraid

I didn’t know love could hurt in such a way.

Bitterness, innocence, remorse, credulity, joy, suffering, hopes, laughs.

I’m afraid of what I feel.

It’s so intense.

It consumes me.