Hello from the thin edge between unconsciousness and delirium. My days are ruled by staving off my two afflictions of sleep deprivation and chronic, sometimes excruciating, pain. “The combination of those two,” Nayana reminded me, “is the recipe for torture.”
For the first month or so it was doable. I had a big trip to look forward to, to get strong enough for. But back in NYC now, something’s shifted. The monotony of the pain, the worsening of my sleep, is wearing me down.
A few days ago I realized that the best thing about Nortryptaline, a nighttime nerve pain medication I’d been faithfully taking for almost two months, was that it knocked me out for about 4 hours. On the medication, I’d fall asleep as soon as my head hit the pillow and then get woken up by my pain a few hours later. But when I stopped taking the Nortryptaline five days ago (I should confess, without consulting my pain specialist), nothing really changed. Off the medication, I still am woken up by pain so bad I cannot reach my way back toward sleep. I still had, have, no choice but to stagger to my feet in the dark, and begin the one thing that brings me relief: moving around on my feet for at least an hour, often two, until I can go back to sleep before being awoken again in another 90 minutes to do the same all over again.
While still on the Nortryptaline I’d been throwing everything at my pain to try to get that second round of sleep in. I tried 600 mg of ibuprofen one night, 1000 mg of Tylenol another, then a tablet of Meloxicam the next. None worked. For a few nights I also took Vicodin. But as soon as I realized that every subsequent tablet of hydrocodone was giving me fewer and fewer hours of relief I stopped it. Pain is bad, but dependence and tolerance scares me more. So now I’m off all painkillers.
I stopped because I lost my confidence in the ability of painkillers to ease the kind of chronic pain I’ve been dealing with in recent weeks. It felt like my pain, ever present but thankfully no longer crippling, has become impervious to medication. I could ask for something stronger, I could lay on more and more of the Vicodin. But none of this is a fix. Crucially, I am lucky enough to be able to be delirious in the daytime right now, and to be unable to reach meaningful restfulness at night. But without sleep my body is deteriorating. I am foggy, heavy limbed, and so, so, so tired.
It feels like I am the parent of a colicky infant, being summoned repeatedly round the clock to tend to a needy baby. Except my herniated discs do not smile back at me, do not nuzzle back, do not provide the rush of hormones I need to sustain such self-sacrifice over and over.
One night last week, groggy and up again to begin my nighttime pacing, I turned to D and whispered: it feels like I’ll never get better. (The self-pitying is worst at about 4:37am.) D had been happily snoring away till then, but awoken by the rush of cold air I let in by rustling the covers, they reached over and began sleepily massaging my busted butt. It was comfort, it was sweetness, but something about their serenity and the futility of their offering wounded instead of soothed me, and jealous of their unconsciousness, I left the room to shiver in D’s studio while I walked off my pain.
To spend all day craving sleep and all evening dreading being supine, because it means handing my body over to Pain, is acquainting me with a new kind of powerlessness. It is a slow-motion unraveling. I don’t like it.