elherdanlossyndrome

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Mini breakdown #ChronicPain #ChronicIllness #Fibromyalgia #Arthritis #sjogrens #LymeDisease #elherdanlossyndrome

TW: Thinking about future, breakdown, negative thinking
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I'm having a mini breakdown after thinking about my future, the usual lol. I'm only 22, I've already been in pain for 10 years and it's going to get worse and worse... year after year, new symptoms show up. This sucks. How do you deal with it? How do you accept this and carry on? I'm scared that I will never accomplish anything in my life because of my health. I have dreams and projects, but it's getting harder and harder to reach them...

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It’s beyond a bad day physically

My pain is unbelievably bad. Like last night it was so bad I couldn’t coupe. I just cried and cried. The one thing that keeps me going, that kept me going through last night, that keeps me going through today. Is the knowledge that one day I know there’s a rainbow🌈 at the end of this hurricane⛈. Things will get better. They will change. I don’t know when, I don’t know how. But they will. I want everyone to know that. It isn’t helpful now. Someday though you’ll find that it couldn’t be more true. Even with this knowledge I can barely coupe because of how overwhelming and debilitating my symptoms are. But I just wanted to remind myself😊💕 #elherdanlossyndrome #Fibromyaliga #ChronicFatigueSymdrome #anixity #Depression #mentalhealthawareness #Scoliosis

2 comments
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A Poem For Zebras #ChronicPain #EDS #RareDisease #elherdanlossyndrome

Ok seriously, how much of a freak have you always felt?

In a field of wild horses thinking you are the only one, to find yourself with stripes, one staring at you like "yeah but you look like us, its just stripes." To hear another horse going "yeah, I mean I've got circles on my ear, same thing, right?" Then another chimes in shouting "yeah I got a stripe on my face. You're fine." But still looking at yourself thinking "but why do I feel so different, whilst looking the same in features? What about these freaky signs"

You try to get past it & go on like a horse but you realise you're not only looking different but feeling it too... They can all eat American grass fine.. "why do I feel the need for Africa's finest? Am I simply a snob? Why doesn't the grass feel right?" All of these questions, always in the font of your mind but tell yourself "you're a horse, damn it, act like one! Remember, you are fine."

A lifetime on grass that isn't meant for you & horses meeting other horses while you're still questioning your stripes & feeling so blue... "I'm really not right, I'm not where I belong." You search for other striped horses but you seem to find none.

You come across a human who is so interested in your life.
They tell you you're going for a ride.
You question if you should.
You start to question where,
but then, you've been a horse too long that you really no longer care.

They take you on a long months journey to find yourself in a Savannah, the smell, it smells familiar, you're sure you recognise you're finally here!

You run & jump & feel so free, you realise you can truly be.
You turn, hearing hooves & your fear kicks in
"am I going to find I'm a misfit again?"
But then you find a sight you have wished for all your life, you were never a freak you just needed to find your tribe.

They welcome you & shout
"You're a zebra it's okay, you'll belong,
let's go & play.. you are now able to feel exactly what you are, a zebra is what you were meant to be, this is your identity."

By Mica Warsop

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I don't have enough spoons to get a spoon (or soup)

Y'all ever have these days? I don't know what's acting up, but the #elherdanlossyndrome or the #MastCellActivationDisorder / #Allergies or the #Narcolepsy #IdiopathicHypersomnia #Migraine #PanicDisorder etc etc is getting to me. I tried to make myself get up and get some food for dinner. I stood up. And I started crying. I felt like throwing a tantrum on the inside, like an angry and scared little kid without control over her life or words to express her feelings about it.
I just ran out of spoons. No dinner tonight. I'm sleeping on the couch in my clothes. The last spoon got dinner for the fur-babies half an hour ago.
I just usually have much better awareness of my energy and body. This took me by surprise entirely. I feel like such a mess.
Ugh, and my hands hurt in new places, which l do not enjoy.
(I guess this is covid-19 finals week for ya. Sigh. I'm ready to be done with grad school. Why did I go back?)

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Hey i think i might have ehler danlos not sure, i get chronic pain alot and sometimes my joints pop out of place, i can also do these "tricks".

#elherdanlossyndrome #notsurewhattdo
#RareDisease