I learned something new today about EDS

 Those with EDS

This EDSer is taking advantage of the Facebook EDS awareness group. 


“These past days I’ve learned some new stuff about myself and my diagnose I had no idea about before. The hardest parts about my diagnose is learning what’s EDS and what’s normal. And EDS, is so much more than hypermobile joints. And I’m still learning about all this.

But thanks to the facebook group ‘Ehlers Danlos Syndrome awareness page’ i’ve learned some new things. This group sometimes post pictures with assertions that has to do with EDS. ”Those with EDS can deal with a lot of brain fog” For example. I saw this particular picture the other day and wondered to myself ‘what exactly is brain fog?’ So I googled it and found myself reading about something i’ve experienced thousands and thousands of time.  For example: * (walking out the front door) Hold on a minute.. Am I wearing shoes?? I’m wearing slippers? Why am I wearing slippers? * Forgetting what you were supposed to do when you walk into another room. * Loosing words and forgetting the point in a story. ‘Where was I going with this?? Hmm…*”


“Another thing I learned today… Another thing somebody in this EDS group mentioned. I felt very… hit.. by that too. Walking into things we know are there. Door posts, door handles, a table that hasn’t moved a milimeter in 20 years, a hat rack i know more than well it’s on that particular wall.. I don’t know how many door posts i’ve bumped my shoulders into, or door handles. I don’t know how many chairs, tables, couches and other furniture i’ve kicked even though i perfectly well they’re there and I even see them! For 2 years I hit my bedroom doorhandle even though  i knew it was there. It was broken, cut in half. but I always hit my forearm into it, and I always had this huge bruise on it after that damn door handle. And every time I walked into the bedroom, I knew the door was there and I knew the door handle was there and still i hit it. Or my coat/hat rack in the entrence. I know it’s there and that I always hit it, and still I always hit my  head on the corner.

I don’t know what causes this, but it’s like we think we’re further away from things than we really are. it got me thinking of balance. Poor balance is a common problem for us with EDS. When My doctors asked me about this, if I have poor balance I told them no, because I didn’t think I had bad balance. Not any worse than other people anyway. But today, all of a sudden i found myself writing an e-mail to the owner of the facebook group ‘Ehlers Danlos Syndrome Awareness group’.”

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