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The issue of sleep – probably the first of many posts

November 3, 2011

I’ve slept very oddly since the stroke and the pain. My natural personality is nocturnal.  When I heard Jean Shepherd describe “the night people”, back when I was nine and first discovered his show on WOR-AM, I knew he was talking to me.Getting up to drag myself to the train, or the commute, or the class, was always a chore. There is not one day in my adult life that I can remember myself bounding cheerily out of bed with the dawn, happy to ,meet the new day with a smile and a song. Arising from the warm, comfortable, accepting bed has always been tough for me. It was like leaving loving arms.

Since the stroke, my natural tendencies now are even more exaggerated. For one thing the pain gets so bad as the evening wears on that I find that I *cannot* get to sleep if I lie doe too early. Sleeping om a schedule has become near impossible. I have gotten into the habit of staying awake until I can’t keep my eyes open, then stumbling determinedly up the stairs to bed. (A few times I have crashed on the couch.) Ever since my friend Leigh’s death from falling down the stairs (in a house just like mine, a 1920’s Colonial Revival), that method of assuring sleep has scared me. There may have only been 1,307 deaths from falls on stairs last year in the US, but I don’t want to be in that number. It must be because of the distant memory I have of tumbling down the stairs when I was two or three, in our house in Basking Ridge. I still remember the helplessness of the actual spill, the somersault end over end, seeing the basement flying by all askew – and my grandfather suddenly appearing at the bottom of the stairs. He caught me and prevented my pre-school form Every night I grip the railing with the clasp of a dying man, determined not to pitch over backwards. The memory of that fall back in the apartment, when I dislocated my ankle, is also very present, even though that differed because I was heading down the stairs and slipped forward, rather than losing footing and heading backwards, as a fall now would be.

The point is that I am so afraid of those sleepless hours, staring at the dark walls, or listening to my iPod, drifting in and out of hypnopompic imagery, and feeling that accursed pain all the while, that I would rather take the fear of falling instead of the fear of lying there. The pain at night isn’t just the burning electricity, although the end of the day and bedtime can make that worse,. It’s in that situation, of course, that the very weight and touch of the sheet and blankets makes the pain worse. There comes a time when CPS “kindles” in the neurological sense. We don’t have the seizures of epilepsy or or alcoholism; instead we have seizures of pain. If you are already at your threshold level, then all it takes is the sensation of a cotton sheet to push you over the edge. You would think that the easy solution to this is simply to leave your leg, arm, side, or lower body half outside of the bedclothes, But then you get the sensation of cold, which is just as bad!

Yes, there can be so much difficulty and distress in attempting to get to sleep that I have developed the bad habit of staying awake as long as possible, pushing it until I am literally sleeping sitting up at my desk, in the middle of another no-longer-diverting game of mah-johnng or Square Logic. The fact of falling asleep at my desk like a narcoleptic is another truly infuriating trait I have developed since my stroke. I sit there, slowly toppling over to one side my lower lip sucked in against my teeth, dreaming up little scenarios that have something to do with whatever had been on my mind. I’m even thinking that they are quite real – until I grab myself from falling over and wake up with a jerk.

Why don’t I just go to bed then? Usually because I am waiting for something – dinner, in most cases. I know that Jake doesn’t even want to start thinking about dinner until then. Most nights, we eat at 8, 8:30 or later.So I spend two hours dosing, or sometimes even zonked out on the couch, until we all sit down for food. Then the short of protein keeps me awake for another four hours.

Last night, I fell asleep before 1 AM, with the light and my glasses on, and the Kobo reader in my hands. I dimly realized that I was asleep when Jack gently leaned over and turned off the light. I slept until 4:30, when a bathroom call woke me. I reasoned that I should take my pills then – early – instead of waiting for the burning to awaken me in 30 or 60 or, even worse, 90 minutes. We in the CPSA usually awaken spontaneously when our morning pills are due. It always astonishes me that my body will remind me of “med time” when I am asleep, and yet I can forget med time for hours when I am awake and busy. Then I slept until 7″40, and awoke refreshed.

But just lying down will always call back Morpheus. I awoke again, and it was 9:20; the BBC World Report was on! I lay in bed and read Daniel Amen’s book on the Kobo – and then nodded off *again*. I swam through sleep as if it was water, surfacing every hour or so to hear an few minutes of the segments on Brian Lehrer and Leonard Lopate. The interview with the skipper who has documented the Pacific garbage mass was fascinating, but not enough to wake me up fully.

Finally, at 12:45 PM, I stood up. 12 hours of broken sleep has finally left me rejuvenated.

I took a shower and felt as if the dried skin of an old carapace was sluicing off of me. What would it take, I asked myself, to actually get on a schedule and sleep for 8 hours a day? I know I can’t sleep straight through, because of the med time. But is it better to sleep for four hours, and then awaken, or for six hours and then grab another 2? Over the summer, when I would awaken (or go to sleep) at dawn, I always loved the breaking colors, the birds calling to each other, and the general quietude of a neighborhood far too buried with engine sounds. A few times I even wished I could just stay awake, go out and work outside, or sit at my desk and write. My mind always returned to Trollope, who wrote for 2 1/2 hours every morning before having to tend to his day’s duties. I cursed myself for my lack of willpower at being seemingly unable to copy his model. Where was my willpower? I used to have such vast reverses of it. It seemed as if I lost it all – and even the desire to have any – after my breakdown in 1993 or 94.

That recognition of my broken “willpower” force was the reason I sought out the Baumeister and Tierney book to begin with. I was most interested to see what their prescription was for people who needed to develop willpower. What did they think was the neurobiological underpinning of the motive force we call “willpower”? What is the way to strengthen it? Their book talks about “ego depletion” as if if were type of fuel. It powers the brain; if you use too much, your willpower engine doesn’t run anymore. This is the reason why you do so many naughty things at night that you wouldn’t do during the daylight – you’ve used up all your “willpower fuel.”

But they weren’t able to tell me what the actual biological mechanisms of that fuel system were. I have become convinced, after four or six weeks of investigation on my own, that that “fuel” is actually dopamine. Something happened to my neurobiology almost twenty years ago that crushed my “willpower mechanism,” and now I must reconstruct it. It is made even more difficult by the actual physical damage that the stroke caused to my thalamus – which caused my CPS – and my caudate nucleus – which gives me such trouble with word recall during speech.

The SAM-e has done a great deal to help my energy level and outlook. It still has not stopped me from spending hours playing casual games instead of tending to my tasks, even though am sitting there asking myself why I am not tending to them. Nor has it gotten me onto the recumbent bike, or persuaded me that the Pilates and yoga DVDs are things that I want to let guide me though regimens.

The exercise component is the next crucial one. I told myself that when I hit 190, I would begin. Now I have. Have I really lost 20 pounds since my birthday? Or more? Every time I push myself up off the floor during these days of kitchen rebuilding, I remind myself of how much easier it will be when I am back to 135 or 140.

I don’t want to sleep 9 or 10 hours a day, though. I feel as if I am missing the best part of my life. To what extent is it made necessary by pain and healing?

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2 Comments leave one →
  1. November 3, 2011 8:58 PM

    I am also a late-night person whose CPS makes me a late-late-night person. I usually can’t get to sleep until 4 am and wake once or twice to deal with the pain. My sleep hours usually add up to 8, which is a blessing.

    Hugs from Wisconsin.

    • November 4, 2011 5:17 PM

      Doug,

      I hear you! You at least have dogs to keep you company – and good company, they are, as your own posts prove. For me, there is almost nothing lonelier than sitting at my desk in a dark and quiet house , with my own body alive with the burning electricity. My son and my husband are asleep (often snoring), and even the cat is off in Hake’s room. My brain is so un-dopamined that I can’t read anything complicated, or write anything sensible. The pain is so persistently intense that I can’t sleep when I lie down. All I can do is wait until I get so soporific that the need for sleep overwhelms the pain.

      That’s when walking up the stairs becomes truly frightening, since there is no one to help me if I get woozy, or my legs turn to water (which sometimes happens.) There are some nights I have crawled up the stairs on my hands and knees because I recognized that my legs would no longer hold me.

      There has to be a more modulated way to live. That’s why I am so interested in what we can do to hack our own brains.

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