"Sick" and sick.

There's a term that I notice in the EDS community that I never really understood until today (and last night).
The term Sick.
Just because I have this disorder doesn't mean I'm sick, or ill, but its a word used to describe how we feel on really bad days and a way to allow the healthy people around us understand a little bit better that we aren't completely okay.
Along with EDS I may have something called postural orthostatic tachycardia syndrome or POTS. I can't get into the details of exactly what it is because I barely understand it myself. Last night though my body screamed enough. I've been working and pushing my body a lot lately and it finally gave way to some not so fun problems. Intense nausea, dizziness, almost passing out and incredible amounts of exhaustion.
I'm still not recovered and had to call into work sick. Here is the thing about me, my immune system is incredibly good. Which is where the word "sick" comes in. I'm not ill in the way most people become sick, from the flue or strep or a cold. I become sick from over working my body and asking too much from it, and when it tries to revolt I push it harder. I didn't realize this could happen, this intense exhaustion and such, but I've learned my body can get pushed too much and looking back now, I notice the warning signs I should have been listening to.

Everyday is a lesson with this disorder.
Everyday I learn something new about myself.

"Spoon theory"

"Spoon Theory" is a way of explaining how much energy one has in a day and how much each activity takes for them to do. A wonderful woman with Lupus thought this up, her name is Christine Miserandino. Though she has Lupus and not EDS like me, her explanation is a wonderful way of explaining this.
I encourage you to please watch this video, it truly does explain a lot.




With spoon theory in mind I think of my daily life differently. I can't go to the mall, and go to work all in the same day. For me it's too much pain. I can only do so much before my body fights back. I was realizing that I spend a great deal of my time and energy working, which doesn't bother me at all. As I have said before I love my job. It allows me to spend time with my great group of co-workers and allows me to see so many customers a day.
Some days though I wish I didn't have EDS. It would be nice to be able to go do everything I want all in one day, but I can't anymore. So I find joy in the little things in life. Spending time with my family, talking with my friends, going to a movie instead of walking around the mall. I still use most of my energy and time that my body feels okay, for work, but it's what I have to do. I can't afford to not have a job, so I do what I can to enjoy it and make the best of it!

College

I've been thinking a lot about college lately, lately being the last three years (even longer if you count the time since fifth grade when I dreamed of going to college). I'm 19, will be 20 in January, and some days I feel no closer to getting to school than when I was in fifth grade. Not to bother you with the woes of my life, but if you have the opportunity to go to school, take it. Two years in a row I have tried my hardest to get to school. I was accepted, that wasn't the problem that has gotten in my way. What got in the way was money. With no one to co-sign loans and no credit history, it's basically impossible to go unless you have most of it saved, grants, and scholarships.
I want to go to school, it has been my dream since I was at least 10 or 11. I dreamed of going to school where the students were there to learn, not goof off. Where I could go back to my own dorm without parents looking over my shoulder. Where I could be the independent woman I need to be in order to succeed.
My EDS doesn't stop me from learning, actually I think it has helped me. I haven't gotten distracted with sports teams, partying (my body doesn't handle alcohol well at all, so I simply don't drink), and I have had to learn to be very determined and responsible about my decisions.

If you get to go to school, do it. I've heard its a wonderful experience that teaches you a lot about yourself, and I hope you enjoy the experience.

Welcome,

“When you hear hoofbeats, think horses, not zebras.”

I am a zebra, I will put it right out there into the world. I am not like everyone else.

I live with a connective tissue disorder called Ehlers Danlos Syndrome (though often I simply call it EDS). 

Medical students are taught to look for the most common disease, syndrome or illness (or “horse” as it applies to my quote posted at the top of this entry) to the question of whats wrong with a person’s body. 

EDS, is a “zebra” condition that causes pain, chronic fatigue, troubles healing, and easily wounded skin. 

HOWEVER, I still live a happy life. 

Recently I’ve been told “I’m sorry you have to live like that, it must just ruin your life.” And yes, there are days I get so fed up I just want to scream, but there’s no use in it. I will have this disease the rest of my life.

So to combat this negative attitude around me, I’m beginning this tumbler account as well as a blog (tumblr is found at http://cassi-fish.tumblr.com/) I will show the world the amazing life I still live with this disorder.