You Had Me At Hello

I'm just writing tonight to say hi and touch base with the readers and real life friends/family/supporters. Things are going well here. I spent 5-7 extra hours/day on the BiPap than my normal 9 hours of sleeping, for Friday through today, Monday. I'm going to try to keep it up until they repeat my VBG on Wednesday to check my CO2 levels. I hope they go down after all this! If not, I'll be really sad and blue/ angry and red. Ha? Spending this much time on the bipap gives me a lot of time to sleep or think. It's awkward to do most anything else for too long on the biPap. I am typing while on it now, but the weird one-eye-at-a-time vision will get old by the end of this screen shot. I am getting more and more emotionally ready for the transplant, I think that's good. I've started to have some sort of dysfunctional thinking like, "Maybe if I stop swearing, I'll get my lungs tonight!" (bargaining, they call it). More than anything, I want the surgical part to be over so that I can stop worrying about it and thinking of new ways to meditate its reality out of my head and replace it with other visions.

Other than that, my Mom and I are getting along very well despite the fact that all of the days run into each other. We are fighting the boredom with all we have. Every day seems the same to us - exercise, meds, biPap, naps, food, television, an errand or two, an appointment or two . . . et cetera. It's getting boring.

I am still having a hard time doing a lot of things that are easy for people. Showering and the morning routine, for example, takes about an hour no matter how I try. Getting ready for bed, similarly, takes a long time. Getting ready to leave the house is a big to-do. Most things take a lot out of me. Even though I'm bored around here, my days are very full just getting the day done with. And it does take a lot out of me to have people in and out of here visiting me. I love to have so much support, but its getting difficult now that some of my friends and colleagues seem annoyed that I haven't seen them. I know it's been a long haul here (short, actually, compared to a lot of my CF bloggies and their journeys to transplant), but as the weeks go by it doesn't change the fact that

I. Am. Tired.

EVERY DAY.

I feel like 90% of people understand that, and 10% of people are pestering to see me, hear from me, etc., more than I can deal with. I enjoy the emotional support, but the more I feel pressured by someone, the less likely I'm going to ever even call them back. It seems like a clue that they don't really get the enormity of what's going on around here. Heck, I haven't even seen my beloved T-Money in two weeks, I think! I actually got an email yesterday that said, "I've been driving by and it seems like you're always home, can't I come over?" and I wanted to be like,
"Are you a weird stalker or something? If I wanted you over, I'd invite you."

So, I want to say thank you to all of my friends and colleagues that are supportive and wonderful and let me take the lead on our communication, and who read the blog and keep in the loop and send an email or call but don't guilt me into calling back. To everyone else who feels like I'm ignoring them, I'm sorry, but you're sorta right. I'm not ignoring you because I don't love you. I'm ignoring you because I am tired. Every day.

Love,
CG