9 surgeries, with more in my future has placed me in this frame of mind.
I have suffered with EDS forever, but only been diagnosed with it since 2004. A question that I get from EVERYONE who knows me (truly knows me) that I can never answer - even for myself is: If you’re supposed to be so loose and stretchy and subluxing all the time, then how come you always complain that you feel stiff??
You know, I don’t get it either. I sublux my hips ALL THE TIME, but yet when I get up from a chair I can barely move them. What gives?
I think it’s a cruel joke. Just when you get someone to partially understand your disease, you do the opposite of what you said you can do. It’s no wonder there are people who don’t believe us!