My BiPAP is a source of great comfort for me. I hate that this is true, but at this point, it is only on my BiPAP that I can sleep. So when I get on it during the day, as I often do when a caregiver is on a lunch break, I tend to doze off in my wheelchair like an old man in front of the TV after a long day at work. I miss crawling into bed and arranging my head on the pillow, lying on my side, stretching out my arms. Sleeping is so different these days.

Sometimes I don’t even realize how tired I am. But I don’t get very good sleep at night, even if I’m not asking for help adjusting my body. I often lie awake thinking about the things I need to do (and trying not to add Drink Water or Go To The Bathroom to that list.) In the morning, I’m up early to help Scarlett get ready for school, or at least to encourage her via various versions of threat/reward/eventual apathy.

After she leaves, I try to get things done. It’s increasingly difficult. I’d love to sit down and write, but I don’t really have the energy. Or the time, because I am also working on taxes, her birthday party, an assignment I took on for the school auction, and general communication with friends and family who care enough to reach out and check on me, leaving me feeling happily obligated to reply in a timely manner. I only sometimes succeed, but when I do spend the morning emailing and texting, it zaps my energy for hours.

Which leads me to my time on the BiPAP. I might bring my phone with me to listen to music or podcasts, or I might bring my iPad so I can read a book, but inevitably, I will lean back and my eyes will close, as my body realizes that is finally finally breathing correctly again, and I can truly relax. I can’t believe this is real, that for the greater part of each day I am not getting enough air. I’m doing fine, and I manage it all with medication, including  my important nightly wine regimen Read More>