hypermobilityspectrumdisorder

We're nearing the end of Gastroparesis Awareness Month. As we've discussed this month, gastroparesis can be a very challenging condition to live with, whether the challenges have to do with our signs and symptoms or the lack of knowledge and acceptance we see from other people.

While managing gastroparesis is tricky, I'm sure our community has a ton of great coping techniques for dealing with this condition and any other health challenges that come our way.

For instance, I cope with gastroparesis by scouring Pinterest for fun recipes that won't cause my symptoms to flare. I also find it helpful to talk about my experiences with folks who know what it's like to live with gastroparesis and other conditions like it.

💚 So, fellow Mighty spoonies, how do you cope with gastroparesis? 💚

Maybe you have a go-to TV show or movie that makes you feel better. Or a book of puzzles you like to do to distract yourself. There could even be a blog you follow that helps you learn how to manage your symptoms.

Let us know in the comments below! 👇

#Gastroparesis #EhlersDanlosSyndrome #Diabetes #ParkinsonsDisease #GERD #Neuropathy #hypermobilityspectrumdisorder #CheckInWithMe

Living with EDS often means that we have to become experts on our condition. There aren't a lot of resources out there on EDS and the conditions commonly associated with it. While we are able to learn from each other and discuss our experiences in communities like the one here on The Mighty, it's easy to feel pretty lonely and lost while dealing with a rare condition.

So, Mighty zebras, we want to know what books, TV shows, movies, YouTube videos, TikToks, podcasts, video games, or any other type of media has taught you about EDS or made you feel seen and less alone. What do you wish you had read, seen, heard, or played right after you were diagnosed (or on your diagnostic journey)?

Your answer may be used in a Mighty story!

#EhlersDanlosSyndrome #EDS #POTS #Gastroparesis #MCAS #Hypermobility #hypermobilityspectrumdisorder #SmallFiberNeuropathy #Migraine #CheckInWithMe

OK, friends, it’s time to sound off! What moments have you experienced that have had you saying, “Wow, that’s so typical of EDS?”

Maybe you’ve been sitting at the dinner table with friends when someone points out that you’re sitting with your legs intertwined in an “impossible” position. 🧘‍♀️

Or you could be on your third specialist appointment of the day and still have physical therapy that evening. 🏥

My most recent “You know you’re an EDS patient when…” moment happened when I squatted to play with my dog and my dad said, “How does a human move like that? You have frog legs!” 🐸

Fellow zebras, please comment below with your “You know you’re an EDS patient when…” moments! ⬇️

Your answer may be used in a Mighty story! ❤️

#EhlersDanlosSyndrome #ChronicIllness #CheckInWithMe #hypermobilityspectrumdisorder

Hi, friends. I'll put it plainly: dealing with these conditions is TOUGH. I recently went through a horrible depressive period that was exacerbated by my physical pain and the myriad of conditions that come with hEDS. I was luckily able to get myself into a group therapy program for a few months that helped me work through a lot of my feelings about being chronically ill and in pain all the time. I've also been in 1-on-1 therapy since childhood, which has proved to be quite helpful as well. It's an ongoing process, but putting in the work has been worth it!

🦓 As I'm sure many of us know, there are good and bad days when it comes to coping with chronic illness. So, Mighty zebras, what has helped you deal with the mental and emotional ramifications of having an illness like EDS or HSD?

💛 And if you're still looking for a coping technique, I hope you're able to find what you need in this thread!

#EhlersDanlosSyndrome #ChronicPain #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome #RareDisease #Depression #Anxiety #Insomnia #hypermobilityspectrumdisorder #CheckInWithMe

Happy Friday, friends! I hope you're all having a low-symptom day.

However, when you do have a painful day or are experiencing lots of symptoms, what do you like to do? What movies or TV shows bring you joy?

When I'm stuck in bed all day, I love to do crossword puzzles or play the same Nancy Drew computer games I've played a million times before. I'm also a big fan of rewatching my favorite Parks and Recreation episodes!

So, my fellow zebras, what do you watch, read, play, or listen to when you have to take it easy?

I'm looking forward to getting new recommendations!

#EhlersDanlosSyndrome #POTS #CheckInWithMe #DistractMe #Spoonie #ChronicPain #ChronicFatigue #hypermobilityspectrumdisorder #alwaysinbed #Migraine

I've been in a pretty dark place lately. Moving has driven home (once again) just how painful and fucked up my body is. The first trip in decades that I've planned just for me, purely for fun, was supposed to be happening now but was cancelled because of the rising covid rates. I've had 2 potential dates ghost me because they were intimidated by my falling apart body. When my brain heads off on a dark path, I try to write... but that's hard to do when it gets so dark I can no longer see the path in front of me. Still, I know writing helps me find my way and working within the structure of a specific type of poetry gives me boundaries that help me feel a little less out of control. This morning (and the darkest parts of my mood) slipped away as I worked and reworked the words of this poem:

ink flows in my veins
from my dark heart & sparks
ebony soul fire

- Remy Soberanes

...

#MightyPoets #mightypoetry #ChronicIllness #Depression #ChronicPain #hypermobilityspectrumdisorder #JointHypermobilitySyndrome #EhlersDanlosSyndrome #Fibromyalgia #Migraine #Dysautonomia