3 days on 3 days off

My disease follows a rough cycle. It doesn’t always but sometimes it seems like a cycle. Like the last 3 days I’ve been exhausted as usual and sleeping a ton. I have had bad pains and bad GI issues, but I have managed to work around it the last 3 days. Today, I woke up,  wham! I already knew today was going to suck. Anything I’ve eaten today has caused me immense pain. I have have had diarrhea all day. More liquid each time. I’ve had about 8 bowel movements today and my last one was both painful, liquid, and bright yellow/chalk colored. Ive had horrible abdominal pain and I could barely touch my food at dinner. 

I wish I could lead a normal life again. I miss being able to eat what I want and do whatever I want. Now all I can do is lay here in bed because it’s too painful to be upright. 

For anyone who thinks I’m just a whiny faker, I say come live with me for a month and see how fucking hard it is. There is such a stigma around being young and disabled. 

I drove my mom 6 minutes away to her job this morning and by the time I got back I was exhausted and had to lay back down. 

My disease affects me badly everyday. There are days I feel like I’ve mastered working around it and then the very next day I feel like I’ve lost it again and completely can’t function. 

I just miss how my life used to be. I worked hard, I went to school, and I traveled a lot. I hiked every weekend and I camped a lot. I haven’t hiked in a year and a half. I used to do like 16 miles a weekend. Now I can’t even do a mile without feeling like I’m going to die. 

Oh well. It is what it is and I should only dwell on what I can change. I have HSP. I can’t change that. 

Yours truly, 

A frustrated goddess


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