Ehlers Danlos Syndrome Awareness Month Days 29 & 30: Working Hard or Hardly Working?

Unlike alot of other people with EDS or spoonies in general, I both work and go to school. Most people ask me when they find this out, “How the heck do you do that?” There is no simple answer. Most of the time I don’t even realize how complicated and mind blowing it is. That is until weekends like last where I work and study non stop. Last weekend was what I like to call GLSEN weekend. Every year the people at GLSEN have a weekend where they bring the board out for meetings and a dinner. It is not only alot of rushing around and working, but a time where I get to see some of my closest friends. These people who have been constants and great supports in my life. People who I love very much. Working with them is one of the greatest pleasures in my life. We work very hard though. We rush around and set up rooms and greet people. It’s tiring most of the time and I usually crash right after and sleep the whole next day. This is even more since my health has declined. It makes me worried how I would hold a job in the future or do this kind of work. After the weekend I was getting a drink with some friends and they were talking about all sorts of accomplishments and meetings that I would love to have but dont have the resources or spoons for. I am proud of the work I have done but getting my work off the ground is going to be exhausting.

For the last day of the month I am making a video that will be up very soon!

Also shout out to Casey for being awesome!!

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