One night last week I had the worst sleep in recent memory. I was in bed at 930pm and turned the light off about an hour later. I was trying to wear my CPAP, but it has this habit of revving its pressure up incessantly which pumps air into my belly and lifts the mask off my face. Even if I can drift off with the belly bloat, the mask lifting and the increased pressure always wake me. It finally dawned on me that the machine thinks I’ve stopped breathing, so it is increasing its pressure to open my airways. This occurred to me after doing a breathing meditation where the woman said, after this certain period of time, most people have taken 12 to 14 breaths. I had taken 6. So, now, thinking my respiration is uncommonly slow, I try to speed it up and that seems to stop the CPAP revving… But I feel like I’m hyperventilating and it’s anything but relaxing.
This is what was going through my head that night. I did fall asleep for about 15 minutes, but then awoke with my sinuses swollen shut. Not the safest thing when you have tape over your mouth. So, I took the mask off and tried to sleep. And tried to sleep. And tried to sleep. The air in my guts was painful. My neck was hurting. It was too cold in my room. Something was clicking out in the hallway. I turned my heater on, I put Tiger Balm on my neck, I went to the loo, I sat in the hallway for what felt like an hour waiting to hear the click and find the culprit, but it never happened. Back in bed, I tossed and turned for hours. It felt like someone had attached jumper cables to my toes. My whole body was amped up and electrified. There was some sort of generator hum in my room, coming through the floor boards, vibrating the bed. It felt like a spaceship was idling in the garden outside my window. It felt like I was sleeping directly above the engine room in an ocean liner. It felt like the world’s biggest TENS unit had its electrodes attached to the bed frame. I tried to convince myself it was soothing, like falling asleep while being driven in the car as a child. But it wasn’t working; I was growing more and more desperate and agitated with every hour. Midnight, one, two, three, four… I finally went downstairs to where my husband was sleeping and woke him up in a panic. In all of the lonely, sickly, desperate nights of the last two years, I have NEVER woken my husband because there would be nothing he could do. But this night I was about to unplug every appliance in the house and then I was going to bang on the neighbors’ doors and ask them to unplug everything. I was wild. He threw the breaker on the hot tub while I turned off the wifi and all computer things. He told me the clicking was the thermostat (why had I never heard it before?), so I turned the heat way down.
I finally fell into a fitful sleep from 530 to 830am after taking a quarter of a Unisom, but the vibration/hum was still there. The next day, we surmised it was the outdoor garden lights. My husband pulled the plug and it seemed to remedy that particular problem. It turned out something different was going to happen every night.
Another night I awoke drenched in sweat, my body so hot I could have happily jumped into a mountain of snow. I got up and took my temperature… 97.7 degrees. How is that possible? I took it again. 97.2. Maybe it’s my blood sugar, that’s what Dr. Myhill thinks. So, I clattered around the living room until I found my tester kit. 89- totally normal. My room was 68 degrees… I know the sweats have nothing to do with temperature and everything to do with ME/CFS, but I still try to search for a better answer. I was able to get back to sleep after putting on a t-shirt, oddly. It seemed to trick my body into regulating itself.
Another night I fell asleep at 11pm and woke up at midnight with terrible pain in the center of my chest. I sat up and immediately vomited – actually, more like regurgitated – into my mouth. In the bathroom, more came up, but I didn’t have an upset stomach at all. Is this acid reflux? Every time I lay back, the pressure in my chest came back. It felt like all my nighttime magnesium pills had ruptured in my esophagus. Which is maybe what happened. I wound up sitting up until 1am when it felt like whatever had passed on down. My potential 7ish hours of sleep became 5.
Another night I woke from a nightmare where my dog, Bowie, was injured and it was up to me to save him while the bad guys were trying to find me and kill me. And I was too sick and weak to run or carry my dog. I was in a mild sweat- face and chest. This is a recurring dream of mine. I went to the bathroom to clear it from my mind and, on the way back, I tripped over the step the dogs use to get up on my bed. It HURT. My stumble and hard-hitting recovery with both palms on the floor woke my husband below and he texted my phone to ask if I was all right. I didn’t answer because I knew his healthy, peaceful brain would go right back to sleep. However, my sleep was at an end. My throbbing shin and the resulting adrenalin rush insured that.
This is what I recounted on my calendar about another night:
“woke multiple times, flexing muscles painfully, clamping jaw. Wore nasal pillow for while, scared of not breathing, switched to nasal mask, woke up with weird throat closure and odd sound being made by me, switched to full face mask for part of night, finally took 1/4 unisom, got to sleep at 345am. Woke up feeling very tired, very groggy, horrific headache, feel like I have water in my right ear. There is pressure and it’s clogged. DRIVING ME NUTS!”
That’s a glimpse into a week of my sleep. I appreciate that you are willing to read about the deranged mundanity that is my life! I will fight for better sleep and continue to try different tactics and different drugs and, one day, I will sleep, I will heal, and I will live again! I have faith. 🙂
Gratitude: No allergic reaction so far to my new nasal steroid. Also, tomorrow I have an appointment with a new (expensive) doctor. He was recommended to me by someone in a similar health situation and calls himself an “environmental doctor”, but seems to have some success with chronic fatigue and will consider out-of-the-box tests and treatments. Fingers crossed!