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>
I’m drinking tea and waiting for the visiting nurse to come. She checks my blood pressure, listens to my lungs, examines my stick skinny legs that lead to feet so swollen it looks like I could use them to paddle a rowboat. I like the nurse because every week for a month she’s told me she detects no change in my progression. Her focus is mainly on my breathing, so it’s always a relief to hear that my chest is clear and my oxygen levels high. She calls me “love.”
ALS is a tricky disease. When a muscle starts to go downhill, you can’t help obsessing over it, and obsessing over your breathing turns out to be a great way to feel like you maybe can’t breathe. Anyone who has ever had a panic attack probably knows what I’m talking about. It can be hard to decipher the real dangers from those that are merely in your head. Harder, still, when you truly can’t trust your body to function properly.
For now, the nurse tells me, my symptoms can be managed with anti-anxiety medication and Aleve. I take a few pills a day, when my chest feels tight, when my ankles feel like ticking time bombs. It works, so that even though my breathing remains shallow, I can always manage to stay calm—and conscious.
An aside: Why are shallow people called airheads? Read More>
I went to my ALS clinic on May 11. My breathing numbers are getting low, but my doctor told me to ignore them. “They don’t mean as much as you think they do,” he said.
“Then why do you tell me what they are?” I asked.
That day, we ordered a cough assist (because coughing and blowing my nose are hard for me), and a Bipap machine—the Trilogy 100—because I didn’t want to find myself in a position where breathing was difficult and I wasn’t prepared.
Three days later, I was back at the clinic. I’d been reading to Scarlett that morning when I felt difficulty drawing in a full breath. I knew that I was not going to suddenly drop to the floor, unconscious, but I was uncomfortable. At the clinic, the doctor told me that what I was experiencing was 20% a breathing problem and 80% a panic problem.
“You’ve probably been thinking a lot about your numbers,” he said.
I had. When you find out that your breathing muscles are weakening, it’s really very different than dealing with weakened arm muscles. Both suck, obviously, but only one makes you feel like you’re in a dangerous situation.
“You’re not in a dangerous situation,” my doctor said, and I could tell that he was right—for the moment. I had gotten nervous, the recent clinic news a loop in my brain, a reminder that I have a disease that only gets worse. But I was safe, and my assistive breathing devices were on the way, supposedly being rushed. Read More>