Breathing Deeply: My Life With Cystic Fibrosis

I didn't sleep very well last night, so today I'm a little on the crabby side. I'm trying to focus on the good stuff. For example, being awakened at 5:30 am to have blood drawn meant I got to see the sun rise through my hospital window. Then the crabby part of me kicks in and says "yeah, but it was so bright I couldn't fall back asleep."

Sleep has been difficult this time around. I think a lot of it has to do with how crazy my meds schedule is. One of my IV antibiotics runs for 3 hours, and I get it three times a day. If that one gets delayed (which it often does because nurses don't always come on time to start it) then my other medication gets delayed.

The most frustrating thing is how unreliable the respiratory therapists have been this time. I don't know if it's because there are a lot of CF patients admitted right now or what, but I've been getting my treatments sometimes 2 hours later than I asked to have them. My preferred chest PT schedule is 9am, 3pm and 9pm. Right now as I'm typing this it's 11:15 am and I just finished my first treatment.

When I get overtired and crabby like this my brain does funny things. It latches on to repetitive phrases and won't let them go. Apparently that's part of having OCD, but the medication is supposed to keep that from happening. Right now what I've got running through my head is all the songs from a "Wee Sing" video that my sister had as a kid. It was called "King Cole's Party." Nursery rhyme after nursery rhyme from that stupid video keeps playing in my head. "Old King Cole was a merry old soul; a merry old soul was he; he called for his pipe and he called for his bowl and he called for his fiddlers three." What does he need a bowl for anyway? Does he have to spit out his tobacco from his pipe? Is the bowl wooden or aluminum? Why not have a nice string quartet instead of three fiddlers? These are the questions that plague me in the middle of the night.

I hope that this afternoon I'll be able to take a nap and that will restore some of my sanity.