I was looking through pictures on my computer desperately searching for this one picture I needed for a project. After a couple of minutes I found the picture and immediately quit the application, hoping I had escaped in time. A sharp pain starts in my chest. I remember climbing mountains, and going on adventures. I remember not having to plan my life around medications, doctors, and energy fluctuations. Spontaneity. Freedom. Carefree. Worry-free solitude. I have always been some degree of sick, in some degree of pain, and had some restrictions, but nothing compared to this. I live with constant anxiety about flare-ups, falls, canceling plans, and being alone when needing help. It's exhausting. My 21st birthday is rapidly approaching and planning the celebration has been yet another reminder of limitations. Sure, you can break those limitations: eat whatever you want, do something physically demanding, or go to a new place where you are unsure of what you might encounter but theres a catch. Breaking rules and limitations with my body can sometimes leave me dealing with the aftermath for days or weeks following. It can mean anything waking up in the ER with no memory of what happened to simply being unable to get out of bed for days. So, is it worth it?
For many people a 21st birthday includes hanging out with friends and family, and having their first (legal) alcoholic drinks. Alcohol is definitely out of the question because of the potential for serious medication interactions (RIP Julie). In my family, tradition is to have a family dinner at the restaurant of your choosing and then desert and presents afterwards at home. For me currently, eating causes pain, nausea, vomiting, and other TMI GI issues. I could go out and eat something I've missed and spend days 2-6 of year 21 dealing with the repercussions, or I could plan something not food, alcohol, or high energy centered. Some 21st eh?
I miss not having to worry about spoons, building accessibility, supervision, and germs. Those were easier days.
For many people a 21st birthday includes hanging out with friends and family, and having their first (legal) alcoholic drinks. Alcohol is definitely out of the question because of the potential for serious medication interactions (RIP Julie). In my family, tradition is to have a family dinner at the restaurant of your choosing and then desert and presents afterwards at home. For me currently, eating causes pain, nausea, vomiting, and other TMI GI issues. I could go out and eat something I've missed and spend days 2-6 of year 21 dealing with the repercussions, or I could plan something not food, alcohol, or high energy centered. Some 21st eh?I miss not having to worry about spoons, building accessibility, supervision, and germs. Those were easier days.
