Everyone gets tired sometimes. Some people get tired more than others—shift workers, people with babies, people with chronic illnesses. I’ve been in the last category for nearly 10 years now, and I had a child on top of it all. To say I was very tired was a statement that touched only the tiniest tip of the iceberg, and there were so many other debilitating symptoms caused by my Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) that it was hard to describe it to anyone but a fellow sufferer.
Fortunately for me, I was one of the few people who started getting better from ME/CFS. It happened gradually and unevenly over the course of a few years, and I chronicled my journey in a series of blog posts.
This year, however, I felt like there was something keeping me from reaching a normal level of health. I was still frequently exhausted, experiencing brain fog and cognitive problems, and having bizarre mood swings. Even my sense of smell was disappearing (no, I hadn’t gotten COVID). None of this was related to exertion, and it didn’t feel like the Post Exertional Malaise (PEM) I’d had with ME/CFS. PEM is a hallmark symptom, or process, in ME/CFS, and it’s very different from simple fatigue. It’s a worsening of many symptoms after exertion. For an ME/CFS patient this could mean going for a short walk, or in extreme cases, simply listening to people talk or having the light on in your bedroom.
Something else was going on. I noticed that I would occasionally wake up gasping for air, and my sleep was fragmented. I would fall asleep every time my husband took us for a drive over 30 minutes, and I was terrified of driving myself long distances. So, I did my due diligence and saw a pulmonologist in early 2022 for an at-home sleep study.
I managed to keep the equipment on for four hours of the night, and my doctor said it was enough information for his purposes. The next day I woke up feeling surprisingly refreshed, so I didn’t think my findings would be abnormal. When I met with my doctor, he said my results were within the normal range, but he was a little suspicious. I agreed to come see him again for a full, in-clinic sleep study if I continued to feel excessively tired during the day.
Well, I waited a bit too long.
This spring (2023), I noticed I was feeling worse. One night, I dreamed that I was trapped in a basement room with no air or windows. I’d had this dream several times before. In the dream, I noticed a small square door in the wall, so I tried prying it open. In reality, I had gotten out of bed, half asleep, felt around the room, found a framed picture, and took it off the wall. When I woke up it was still there, placed carefully against a chair.
I wanted another sleep study, but I was tired of making doctors appointments months in the future due to staffing shortages, and I wanted the flexibility of using the equipment on my own time. So I ordered an FDA-approved online test through a company now called The Sleep Doctor. I popped the equipment on one night, and after some fidgeting I went to sleep.
Again, I woke up feeling oddly refreshed. I didn’t think the results would show anything abnormal. I knew didn’t fit the stereotype for sleep apnea, either—I didn’t have any weight to lose, and I am still somewhat young at 38. I don’t smoke or drink alcohol. Unfortunately, that profile doesn’t represent a large portion of sleep apnea sufferers, and the stereotype can lead to lack of diagnoses.
When I met with the doctor online the next week, I was shocked. I’d stopped breathing 18 times per hour, on average. 140 times over the course of the night. My oxygen saturation was 83% at the lowest. I was diagnosed with moderate sleep apnea.
I couldn’t hear what the rest of the doctor said, aside from sending in a prescription for a CPAP machine, because I was crying. I did not want sleep apnea. I did not want to need a machine to help me breathe at night for the rest of my life. I was devastated that I hadn’t caught this sooner, that it had been quietly damaging my brain and my overall health for years, preventing me from working and doing things I loved.
I can’t say exactly when it started. For years I’ve had nights when I woke up gasping for air, and thought nothing of it. I thought it was just stress. I wasn’t conscious of the other dozens of times I stopped breathing. The first time I remember one of these episodes happening was at age 24. Yikes.
I wanted to feel massive relief upon diagnosis, but relief was just one tiny grain of what I felt. I researched everything I could about lifestyle changes and special exercises that could improve my apnea, so I’d stand a chance of getting off that machine someday.
But, I also ordered a CPAP.
ASAP.
Sleep apnea is not something you want to live with. The consequences can be dire, sometimes fatal. I knew getting used to the CPAP would likely be challenging, but the alternative was continued misery.
I’ve been using my CPAP machine for a couple of weeks now, and consulted with my local pulmonologist on the settings. I’ve had a few days of surprising energy and clearheadedness. Is this what normal people feel like? I think. It makes it worth the annoyance. I’ve also had several migraines since starting on my CPAP, which I can only attribute the my body and brain being unaccustomed to normal sleep. I used to get “weekend migraines” after periods of little sleep followed by a lot of sleep, and I wonder if that’s the case here. The prodrome is long and unpleasant (hello, again, crushing fatigue), which has been dampening the positive effects of the CPAP. But I’m determined to keep going.
At this point, I’m feeling a little more relief just knowing that there is a solution to my symptoms and an end to the damage this sleep apnea was doing to my body. I’m cautiously looking forward to doing more of the things I enjoy, and enjoying more of the things that I already do. If I can get out of “survival mode” and not spend every waking minute trying to fix my body and brain, it will be worth all the hassle of having a little robot next to me, pressurizing air in my face and telling me to “breathe, breathe, breathe.”
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