An Intro to my life with EDS

Any questions and emails will be answered in the next video in the series. To everyone who has supported me, or taken even a few minutes out of their day to educate themselves on EDS or other diseases that effect people like me, I love you. I love all of you for everything you've done, and the kind words you've said to me. Thank you so much, all of you. You're amazing people.

-Kitten

http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

Category:

People & Blogs

Tags:

• EDS
• genetic
• disease
• illness
• Ehlers--Danlos Syndrome
• connective
• tissue
• disorder

[Ohloveeh]

I'm interested to know about things that would cause you pain that people generally have no problems with, say a firm hug or a hard handshake things like that. How limited are you to physical interaction (is pretty much what I am asking).

[FragileWithSpunk]

@Ohloveeh Sort've, I've had people hug me too hard and knock the wind out of me. Ribs are all held together with cartilage, so my rib cage is actually really flexible. You can literally put your hands on my ribs, squeeze, and they'll give an inch or two. But as far as pain, that is entirely random. Which nerves are acting up depends on the day and what I've been doing. Sometimes, I actually have great days, pain wise. Mostly, though... I wake up feeling like I've been hit with a truck.

[TonyMon16]

so it just comes and goes yeh? (referring to the video where you jumped up and ran to door, with no apparent issue, i do believe that can happen though dont get me wrong, just saying) Also its kinda cool that it didn't effect your shoulders, wrists and hands referring to all the PC usage), so you dont get so bored just sitting around .

[FragileWithSpunk]

@TonyMon16 Once we hit the hallway I twisted my knee and fell, Sammy got pretty mad at me... I'm physically capable of doing things like that, but I suffer repercussions both immediate and long term. Example: I danced ALL night at Sammy's wedding two years ago. I was healthier then, but even so I was in agony, but it was a once in a lifetime event. I also spent the next week unable to get out of bed, and with all my joints horribly swollen. Much of EDS is about prevention. Does that make sense?

[St3v3z]

There are so many different illnesses that people can have. People who dont have an illness generally dont overy want to know lots about every single one of them. Call it ignorance but its the way it is. You shouldnt get offended if you get accused of joy riding when you look fine and can clearly atleast stand up. 99% of people who can do those things are perfectly healthy so why wouldnt it look like joy riding. Life is alot more fun when your laid back and take life less seriously.

[FragileWithSpunk]

@St3v3z Its one thing to assume I MIGHT be joy riding, and ask me, wherein I would gladly explain... Its another to verbally attack me in public without knowing anything about me. Especially with the kind of language that this particular lady used.

[Ohloveeh]

@FragileWithSpunk Hmm okay, so I imagine you that have painkillers for when it gets really bad?

[damiaen92]

Hey can I cuddle you

[Groundhoggies]

I am very surprised you'd only get affected so late, but that's rare diseases for you.

I hope you get others around you to understand more, and it was a very nice explanation. I've never really thought about it like that before.

[ZomgZomg007]

:(

[Lorensoth3]

I feel the same about my medical problem, it's not half as physically debilitating but does cause me lots of problems. It's called SAD and it causes a lot of issues with my daily life. At it's worst I won't even be able to get myself to step outside my apartment. It's all in my head I know, but I find it hard to tell people about. I look fine on the outside, but to generalize it I am constantly tense and nervous around people. :/