Its not normal....

You know I don't often rant about Ehlers Danlos or get upset. I just try to except it. But lately too much has been happening, too many of my friends have passed or are hurting. Lately I seem to keep getting bad news about my health. I have friends who are in so much pain, and have been for years. I know deserving people who are bed ridden. I know people who had EDS and passed suddenly, and although I don't like to think about it. I know that the same thing can happen to me. I know that EDS is degenerative. Every time something happens to one of the zebra community it hits us all hard. And some may say I should not be a part of the zebra community but I am a zebra and I will not leave my herd. What gets me through is the support of my zebra friends. But when one of them passes it makes it that much harder to deal with.

You try to be normal and you try to act like it doesn't get to you.But its not normal to wake up crying in pain every night, its not normal to have to spend more time in bed that out and about, its not normal to not be in pain 24/7, its not normal to be faced with your mortality at the age of 18, its not normal to have to make decisions about surgeries, treatments and medications. I should be deciding which sort of car I will get or which university I will be going too but EDS has taken those things away from me. Today I started crying at the place where I volunteer because of a small thing and it was not the thing that happened it was everything that has been happening lately. I try to hold it together but every now and again I fall apart and I am learning that thats okay so long as I don't unpack and stay there. Today is a rough day but tomorrow will be better, I will make sure of that.

To my fellow zebras and spoonies keep fighting, I am always here if you need me.

And to my family and friends please don't worry about me I am just having a bad day and needing to rant.