Winter Pain

Oh the weather outside is frightful and EDS is a bitch. Sorry to be blunt but this time of year always hurts my joints but this winter puts a whole new meaning to pain. The back and forth of -45 wind chills one day to 27 degree weather the next day is back enough on normal people let alone someone with my unique superpower. It's a pain in the butt and honestly it sucks. Unfortunately I don't have the option to stay at home and curl up with my blankets on bad EDS days. I have to go out into the real world and pretend that my joints aren't ripping at the seams. Thank god for my loving husband who takes care of me on the frequent bad days. I don't know what I'd do without him. 

Ehlers Danlos sign

This is my offical EDS sign for our secret club

A Ways to Go

I never realized until recently how many of my dreams I gave up on when I received my diagnosis. Everything became about security. Whether it was my job, my friends, my house it didn't really matter. I had to make sure I could take care of myself and that no one would have to worry about me.  I realized that I didn't want to lose control of the aspects of my life that I could still control. I really think I let this whole Ehlers-Danlos Syndrome thing take over but honestly it was so hard not to let it. It seems like every time I go to the Dr. they want to test me for something else and diagnose me with some other unknown problem linked to EDS and the amount of information they give you is astronomical and overwhelming. I miss dreaming about the future and being hopeful instead of scared of what EDS will do to me.  I need to start dreaming about the future again in a positive light instead of dwelling on the bad. More and more lately I am realizing that I am more than a diagnosis. I am more than my syndrome and I can learn to be positive and hopeful again and do the things that I want to do in my life. I may have a ways to go to get there but at least it's a start.

Worn out

It takes a lot of strength to get up everyday align my joints and put on a smile. It hurts.  Even when something is not dislocated it still hurts. It always hurts.  Being positive has never really been tough for me though.  I have always thought that there is someone out there who would love to only have Ehlers-Danlos Syndrome and that I should be happy that it's not worse.  Someone recently told me that I must have been born with extra endorphins which I think might actually be true!  While being positive is a great thing it has really caused me to forget about myself and ignore the pain I am in which really gets me into trouble in the long run.  For my health I really need to start thinking about myself and learn to not ignore the pain and try to put my needs higher up on the priority scale.

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!