Two o'clock. That seems to be my normal beginning of functioning for my day. It's not when I get up, or even when I wake up. Thanks to ALS, waking up often precedes the act of getting out of bed by anywhere from one to three hours, sometimes more depending on the schedules of my various HCA's. No, what usually happens is when I finally am in my chair, mobile and rolling, I have coffee and breakfast, followed immediately by a nap. Then, at about 2:00 PM, I wake up, not really ready to roll, but at least prepared to attempt it.
Two o'clock. That seems to by my normal time to wake up in the middle of the night, often driven to wakefulness by nightmares or dreams. On a regular basis I wake up so quickly I can still hear the echos of the last midnight scream bouncing off the walls of my bedroom. I do not sleep well after 2:00 AM, usually taking at least an hour to shake the aftermath of a nightmare, only to awaken every hour or so thereafter, leaving me wide awake for when my one of my various HCA's arrive.
If I could, I would take a sleeping pill every night just to escape this wakeful pattern. I don't. The sleeping pills hang on for a long time, making me even more sleepy and groggy the following day. Even after 2:00 PM, assuming my drugged nap doesn't run longer than normal, I find it a challenge to be active in any intelligent manner. Often a sleeping pill at night turns in to a totally non-functioning day to follow.
Sleep issues are normal for people with ALS. We need more sleep than most people can possibly understand. Twelve hours out of any day is not an uncommon sleep cycle. The reverse happens too, where we PALS find ourselves unable to sleep in a normal pattern, wakefulness dogging us to the point where we find more that 20 has passed without having a useful sleep. So we are sleep deprived the next day.
Sleep is a big deal. I'm not sure if I want to sleep or if I fear sleep. Sleep brings the dreams, waking me in the middle of the night. Wakefulness carries my exhaustion into the next day. I will most likely die in my sleep, my core muscles unable to push, my diaphragm unable to force CO2 out of my lungs in sufficient quantity to keep my brain alive.
Yet sleep I must. Sleep I will, Whether drugged or not. It is one of those basic human functions, one of the functions I am already beginning to lose as my diaphragm and core muscles weaken. Sleep I will, one day raging in a dream I will pass into that long darkness, staying asleep forever. I wonder if the dreams will follow me into death? Or are they the strange workings of a mind deprived of adequate air?
By the way, to those of you prepared to tell me I should get a Bi-PAP or some other machine to help me sleep, don't bother. This is one of the battles I will leave my body to fight. Soon enough the battle will end. Soon enough I will sleep well again. I don't want a machine.
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