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>
Sometimes I think that people wonder what I do all day. I mainly think this when they ask “so what do you do all day?” No one is saying it in a challenging way, they just seem genuinely curious about how I
kill spend my time. So I thought I would share a day in the life of me with ALS.
6am: Rob leaves for Chicago, and my assistant Marianela arrives. Otto is let outside. I’m awake, but exhausted. I decide to stay in bed longer even though it’s totally uncomfortable.
6:45: It was a good effort, but I can’t ignore the pain in my back and my feet anymore, so I call for Marianela. She lifts my head and my legs and swings me to the edge of the bed. Then she picks me up and puts me in my chair. I wheel to the bathroom, where she gives me my medication and puts my contacts in for me. We are trying to be quiet because, after a big weekend in Arizona, Scarlett is still sleeping.
7:15: Scarlett wakes up. She gets dressed, and I try to convince her to have breakfast. She eats three pieces of cereal. Read More>
Otto sleeps in a crate next to Rob’s side of the bed. He’s not a quiet sleeper. First of all, he snores like a drunk old man. Second, at various times during the night he moves around in his crate so roughly and wildly that I’m almost positive he is transforming into some kind of werewolf, and that when he finally bursts out of his crate, he’ll be wearing a cape he fashioned using only his doggie blankets.
It can be hard to sleep through.
I’m back to wearing the BiPap with nasal pillows at night, which has really put a damper on my goal to never have anything that far up my nose. I’m also using the chinstrap, which helps me keep my mouth closed while I’m sleeping. To quote my friend Kevin Swan, the chinstrap has definitely not brought the sexy back. It makes me look like an emaciated high school wrestler, but I must admit I’m sleeping better.
I can no longer lift my left arm over my head for a stretch, and it’s been ages since my right was able to move that way. So I wake up in the middle of the night with shoulder pain, and if it’s really bad, I have to wake Rob and ask him to raise my arms towards the head of the bed. Obviously, this is the highlight of his night, especially when he was comfortable and snoring just as loud as Otto. Read More>