Spoons

There is a word in the chronically ill world that means something different to us then the normal world.  That word is spoons.  Spoons are a metaphor for how much you can do in one day.  Before I do something I ask myself how many spoons is that gonna cost me?  If I do that activity what will I not be able to do later?  Spoons are non-transferable and unfortunately you run out faster then you think.  I am a frequent over acheiver and usually that includes using way too many spoons.  When I use too many spoons I don't magically gain more spoons I start digging into my next days stockpile, which drastically effects my energy and ability to do things the next day.  It is a vicious cycle that causes me to have days where I can physically do nothing.  On these days I'm stuck on my couch and my loving husband takes care of me.  Which begs the question, why do I overdo it so often? Well that's very simple, I refuse to stop.  If the enevitable for me is ending up in a wheelchair why not live it up while I can?  I want to be able to tell my kids someday that I never gave up and I never let Ehlers-Danlos Syndrome stop me.  My husband, Timothy, and my best friend, Mischelle, understand that I'm never gonna stop and only lecture me when I'm about to do something very stupid.  I am very blessed to have such a wonderful support group surounding me, even when I frequently over do it. Ehlers-Danlos Syndrome is not what I wanted in life but it has taught me who will really stick with you through thick and thin.

My first post!

My whole life I’ve been tough. I’ve weathered thru a lot in my life and it’s always been my sort of badge of honor really.  I’ve always experienced the pain of Ehler’s-Danlos syndrome although I was never really sure what to call it. My parents would call it growing pains while my teachers would see it as an excuse for me to not try harder in gym class. I can’t even remember how many times I was told to “suck it up” or “walk it off”, which I did so happily.  I guess I always assumed I wasn’t alone.  I wasn’t really different from everyone else.  There was no way for me to know that everyone didn’t experience the same pain.  I still don’t see myself as different but that’s becoming harder and harder to convince myself of.

It seems as though everyday there is a new problem that comes up.  Lately my stomach has been a real problem for me.  Everything I eat and drink makes me sick to my stomach even though I eat a very healthy diet.  Yesterday I had an endoscopy done and thankfully nothing was found wrong with my stomach. Although finding nothing is a great thing it's hard to hear the same answer over and over again, "Unfortunately that's Ehler's-Danlos Syndrome."  Eventually it kind of starts to make you angry.  I don't just wanna sit and feel like crap for the rest of my life and I'm determined to do something about it.  When I find that something I will let you know! All and all I am very blessed. I have great friends and a wonderful husband and family.  I just wanted to share my experiances and hopefully help others!