I mentioned in a previous post that I was recently diagnosed with sleep apnea, but I want to explore my journey with it so far, and what it’s like coping with it as a blind person.
For about a year, my primary care doctor had been pushing me to get a sleep study done because of symptoms I was having. My memory was deteriorating, and I was more fatigued than my other conditions could account for. I was also having difficulties with my weight. I wanted to get It done, but because of my disabilities, I rely on caregivers to take me to appointments, and they hadn’t been able to do that for various reasons, so I didn’t get the sleep study until June.
Before I could get that sleep study, I had an appointment with a sleep specialist, Dr. Gurski, in April. She assessed my condition and we talked about why I thought I needed a sleep study. She looked at my airway and noticed something that could make it hard for me to breathe when I sleep. What I describe in the next paragraph might not seem related to this, but it is, so please bare with me.
When I was little, my mom was told that my tongue was too large for my mouth. I’ve had some problems because of this all my life, but nothing that needed treating. Other parts of my mouth, like the amount of space between my teeth and cheek, also seem to me to be too small. My wisdom teeth, which don’t seem to have enough room, are constantly cutting my tongue and causing pain. I plan to get them pulled once I have more important health problems under control. I also frequently get food stuckbetween my tongue or teeth and my cheek when I eat and have to reach a finger in and pull it out. I have to be very careful not to bite my tongue or cheek when eating. Finally, it takes concentration to keep my tongue in my mouth, so it sticks out most of the time and I sometimes drool.
When Dr. Gurski had me open my mouth as far as I could and looked in, she couldn’t see my airway. She explained that she should be able to see it, but couldn’t because my tongue is so big, and she thought it might be blocking my airway when I sleep.
We talked about the sleep study and how it could be done either in the sleep lab or at home, but it would be better to do it at the lab if I could handle it so they could monitor me. We decided to try the lab and she set an appointment.
That appointment had to be rescheduled a couple times, but we finally managed to do it on June 17. My mom and stepdad took me to the lab in the evening, where we met with the staff, who explained exactly what would happen. I had a Braille book with me so I could read until I fell asleep, along with drinks since I’m always thirsty and my mouth is always dry, my nighttime medication, and of course my phone and charger. My family left until morning once they knew I was okay. I had purposely done things to wear myself out, so it wasn’t long until I was ready to try and sleep.
Before I slept, they put wires all over me so they could monitor me. I thought I would have trouble sleeping, but I took some melatonin to help, and the bed did something that I think helped. I have a hospital bed at home and am used to raising my head and feet while I sleep. I was afraid the bed at the lab would be flat and that would cause problems, but it adjusted, too. I fell asleep quickly, never even touching my book. They woke me in the morning by talking through an intercom speaker near my bed and told me they had seen some things but wouldn’t discuss exactly what. My family picked me up and we left.
A little over a week later, I got a call. The doctor diagnosed me with moderate sleep apnea. While at the lab, I had 18 events, or times where I had trouble breathing, per hour. Dr. Gurski ordered an APAP, or Automatic Positive Air Pressure machine, for me. This is a little different than the well-known CPAP (Continuous Positive Air Pressure) machine. Both provide air pressure to keep your airway open, but wher the CPAP machine uses pressure at a constant level, the APAP machine uses a range of pressures and automatically changes between them based on your breathing. It took a couple months to get it, though, because of issues with my Medicaid.
I finally got an appointment to get my machine set for September 13 at the company providing it and any supplies I need, AeroCare’s offices. When we got there, they led us to a room with a table and several chairs, and we were told there were a couple other people coming. Once another person showed up and they realized nobody else was coming, we got started. My mom sat by me and helped me with everything since I couldn’t see the guy who worked with us demonstrate things. First, they discussed different mask types. I breathe through my mouth and nose, so I needed a mask that goes over my whole face rather than the kinds they had that only fit over your nose. They had us put the masks on and learn to adjust them. Once we had our masks picked out, they showed us how our machines worked and how to set them up and take them apart. They explained the different settings the machines have and how to change them (more on that in the next paragraph). Finally, they explained to us how often we needed to top up the water chamber, which adds some humidity to the air to keep your mouth from drying out, clean the hose, mask, and water chamber, and how often we would get new supplies, like the cushions that fit on our mask and the filters for the machine. I have to call them every month for certain supplies, and every 3 months for others. Finally, they showed us how the machine, hose, and mask fit into a special case so we could take them home and take them when we travel, and handed us some papers about everything they explained to us that day.
When they showed us the settings on the machine, I noticed a problem. The machine has no speech, and the settings are shown on a screen. There’s a knob for moving between settings and press to select things. The screen will also show how good your mask seal is when you have it on. Since there’s no speech, the settings and other features are completely inaccessible to a blind person like me. There’s an app for the machine, which is very accessible, but it only shows statistics about my sleep and doesn’t let me change the machine settings. If I want to change anything, I have to ask for help. This is really frustrating, and I feel like this shouldn’t be that hard to make accessible.
I’ve had the machine for about a month and have gotten used to it. The mask isn’t as uncomfortable as I expected. I can’t sleep on my side with it since it pulls a little to one side when I try, but I didn’t sleep that way much anymore because of my adjustable bed anyway. At first, I found myself waking up and taking it off in the middle of the night without realizing it, but that’s pretty much stopped. I do seem to be sleeping better with it, and my memory is improving. I like it in a lot of ways, but the inaccessibility really frustrates me.
If you’re blind and use a CPAP or APAP machine, or a similar product, or if you know someone who does, I would love to hear from you or them. Have you or they had problems using it independently? Please contact me if you have.