#rareillnesses

[fox-and-roses]

I stood up and my hip and knee literally went out of their sockets and even tho they popped right back in it hurt so fucking bad and also they usually don’t do that and I have no idea how to up my self care game around this and I’m freaked out and scared. I’m also literally in the middle of the woods and had to talk to student life around what to do if I get so sick I’m incapacitated and need to go to the hospital. Coming to school has made me emotionally so so happy and I’m so happy to be here and wow am I nervous about my health. My hair reflects that. Help. #ehlersdanlossyndrome #ehlersdanlos #disabledandcute #spoonie #chronicillness #geneticdisorder #rareillnesses

[fatgirlpoet]

POTS

Some days I feel like my heart might explode

I can feel it pounding in my chest

Like a caged crocodile

Ready to snap through my ribs

As though they were the bars keeping it from freedom

My heart races into my throat and I can't breathe

I can see the starry night

And I fall

POTS stands for Postural Orthostatic Tachycardia Syndrome. It means that my heart rate goes over 100 when I stand up. It can cause you to pass out and some people are confined to wheelchairs permanently. Today my heart rate was about 150 so I'm confined to bed all day. I'm missing a movie with my family and a chance to enjoy a nice spring day so I'm writing poetry instead.