Here it is 3:40 am and I am still wide awake. These steroids are so weird. I have never had a problem sleeping 8 hours, I’ve never had a sleep problem. But since I have started on these steroids, I don’t sleep. I have absolutely no desire for sleep. Every night, middle of the night, my eyes pop open at 1 or 2 am and I start thinking about making eggs, vacuuming the house, standing out on the balcony, staring at the night sky. Tonight, I fell asleep at 8pm. I thought, OH GOOD!, I’M FINALLY TIRED!! YAY! But, NO , here I am. I am awake blogging, better than lying awake thinking about how many pairs of tennis shoes I have, or if I should iron some clothes, or if I should try to eat a cookie or sew a button on a shirt that fell off. I feel ok though, just not sleepy feeling. I’m still so very weak, so when I am awake, I just sit, watching crappy t.v. through the night. Truth is I HATE T.V. !! I hope I can go back to myself when I get off these steroids in several weeks. I can’t imagine being awake for the rest of my life. I will surely go insane.
I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.