Tuesday, April 25, 2006


I have been up pretty much all night, every night, for about two weeks now. The pain is so bad, so relentless, I cannot sleep. By the time it lets up enough for me to try, I'm left with maybe, MAYBE three hours to sleep.

I am not a happy camper about this.

I like to sleep. Love it, in fact. I get this from my mother's side of the family. My grandmother so hated to be woken up for any reason that the family would draw straws to determine who had the "honors" on any given day. The procedure for this? Opening the door slowly, extending a broom stick into the room, poking my grandmother softly with said broom stick, and then slamming the door and running like hell. You see, Granny would pick up whatever was handy and throw it at the offender. Her cane, books, water carafe, you name it, it's been chucked at the door. She was legally blind, so you'd think her aim would be bad....but no. She'd had years to perfect the art of flinging miscenellania at the bedroom door. If it had been an Olympic sport, she'd have brought home the gold, every time.

My mother was much like Granny. Trying to wake her up would usually only result in an earful of language that would have made a sailor flinch. After which, she'd fall back asleep almost instantly. And a nap was to NEVER be interupted, unless someone was bleeding or the house was on fire. My mother was an old hippie and not a stickler for rules by anyone's measure, but the "mom is asleep, leave her alone" rule was one on which she would not waver in the slightest.

This is not to say that my dad's side of the family did not have their annoying sleeping rituals. My father and former stepmonster snored so loudly you'd have thought the foundation of the house would shake apart from it. And for some reason, they absolutely would not sleep without the tv on. They would wake up from a deep sleep if it was even turned down a tad, or if the channel was changed. And though they slept with the noise of the television and the noise of one another's chainsaw snoring....my father absolutely insisted on QUIET in the house when he was asleep, and was easily roused from sleep
(and roused to anger) from too much noise. I remember being on a vacation with my father, all of staying in this quaint log cabin in the woods in Tennessee. My father actually went outside and yelled at the crickets to shut up so he could sleep....and amazingly, they did. For a short while, anyway. My younger sister was nicnamed "Butt-Butt" for years, thanks to her penchant for sleeping on her stomach and knees with her posterior sticking straight up in the air. But perhaps the weirdest of all was my brother, who insisted on sleeping with a fan on his face all night, every night...even in the dead of winter.

Probably the strangest sleep ritual I've ever personally witnessed was that of an ex-boyfriend, whom I will refer to as "Craig." Craig and I had an unusual relationship, and it started out in a bizarre way. I was living temporarily
(for the summer) at a punk house occupied by my best female friend at the time, "Kasey" and her boyfriend, "Quinton." I had a job babysitting for my older brother's kids during the day, and many times it left me absolutely exhausted. One night, I had crashed out on the sofa and was literally sleeping through a party Kasey and Quinton was holding for some reason or other. I was sleeping blissfully when a strange guy poked me in the ribs until I woke up. "What do you want?" I growled out (shades of my mom & grandmom at work there). "Do you have a boyfriend?" he asked me. I replied that no, I did not. "Now you do!" he said happily, and wandered off. I assumed he was drunk and went back to sleep without another thought for the stranger. In all likelyhood, I assumed, he'd forget all about me tomorrow.

I was wrong. Not only did he remember me, but he took his offer--and my silence as acceptance of said offer--in all seriousness. I woke up to find out that although I'd gone to sleep boyfriendless, I woke up with not only a boyfriend but a date with said boyfriend for that evening! I didn't know whether or not this guy was a desperate loony, a hopeless romantic or a flake. In any event, I had nothing better to do, so I went on the date. From that day til the end of summer, Craig and I were an item.

Now, Craig and I dated at a time when I was not sexually active. He knew this, and was fine to wait. He had a reputation at the time of being something of a relentless horndog, but my experience with him was that he was a total gentleman. And he had plenty of chances to be relentless had he chosen to be so: you see, Craig and I used to sleep together.

And when I say "sleep together," I do actually mean "sleep." We often slept in the same bed, both at my place and at his. And believe it or not, sleeping was all that we did. Well, we might have fooled around a bit...but there was no sex. Honest.

It was from this arrangement that I was able to witness his excessive sleeping ritual. Every night, no matter where he happened to be at the time, he would take an hour or so to completely blacken the room. Not a single shred of light could be permitted to shine where he intended to have his fourty winks. He would safety-pin curtains together, roll up towels and stick them under the doorstops, tape dark paper onto the digital displays of alarm clocks and put heavy blankets up over the tops of windows where a small streak of moonlight might somehow penetrate the curtains and interfere with Craig's precious slumber. He would even lie down on the bed and check the room from every angle to be certain that a careless midnight rolling-over would not subject him to anything other than total darkness. It was like sleeping next to the vampire Lestat.

Now that I am married, I often hear stories from people I know or via places like "Dear Abby" about couples with incompatible sleeping rituals or habits: one snores, or hogs the blankets, or has bad nightmares nearly every evening. One insists it remain very warm while the other would prefer a chillier atmosphere. One wants to cuddle during sleep, and the other wants to left alone.

In that, I suppose my husband and I are normal: we have some sleep issues, but none drastic enough to want to send the other to sleep in the guest room permanently. We both snore, and I prefer the room to be cold while he'd like it to be warm, and we both would rather not cuddle all night long. He is a notorious comforter hog, and I am a notorious pillow hog. He likes to hit the snooze button a dozen times or so every morning, and it drives me nuts. But like I said, we don't seem to be much different than most other couples.

The only real difference is my sleep problems, which I work to make as inconvienant on my husband as humanly possible.

Let me describe what sleeping is like for a person like me, with MS and trigmenial neuralgia.

First, sleep doesn't always come. Insomnia is common, almost routine. The fact that the fatigue is awful all day and I'm exhausted beyond words doesn't seem to have any effect on the insomnia. Not to mention the fact that there are actually two kinds of insomnia I suffer through: lack of sleep due to the pain, and lack of sleep due to MS. Of the two, I prefer the latter. I tend to get stuff done when it's the MS to blame: I do a little laundry, some dishes, work on some homeschooling stuff for the kids, work on my book. When it's the pain, I can do little to nothing. I can play solitaire on the computer. I can read a little. I can blog.

Even when insomnia isn't an issue, sleep does not come easy. Every night, when I lay down to sleep, what we in the MS community refer to as the "pins and needles sensation" starts up. It literally feels like someone is jabbing me with little needles, up and down my legs. Sort of like having them "fall asleep," but different somehow. I also get the restless leg syndrome, which is hard to describe. It's basically what it sounds like: your legs are restless. Which leaves you restless, too.

These symptoms usually last anywhere from 20 mintues to an hour before I can finally fall asleep. After that, three big symptoms keep me from staying asleep: neurogenic bladder, muscle spasms and unexpected neuralgia pain.

The neurogenic bladder means I have to go to the bathroom...a lot, and with great urgency. I haven't responded well
(or at all) to the medications currently on the market for it. I basically get up to go to the bathroom, on the average, every hour to hour and a half. Then I crawl back into bed, and the pins and needles/restless leg starts up all over again, and I have to go through the whole rigamorale until I can finally, once again, fall asleep....until the next time I have to go to the bathroom.

The next thing that wakes me up is, thankfully, much more rare: the muscle spasms. Imagine having 100 charley horses in your leg, all at the same time, waking you up from a deep sleep. That's what it's like. On a bad night, I might wake up from spasms two or three times. And then
(you guessed it) I have to sit through the rigamorale yet again before I can finally fall asleep.

The unexpected neuralgia pain is pretty much what it sounds like. It means I go to bed in little or no pain, but something happens in the night which brings on a bad attack of it. This can be something as little as simply rolling over too hard on my side and having my face hit the pillow just a smidgen too forcefully. Or it can have no cause that I can determine. In any event, once this happens, I can't fall back to sleep until the pain is over. I must either wait it out
(if it happens to be my lucky night and the pain is short-lived) or take medications and wait for them to kick in. Either way, you're looking at anywhere from 20 mintues to an hour or more. And even then....you guessed it! The rigamorale must be suffered through before sleep can commence.

So as you can imagine, I don't get a lot of sleep...and what sleep I do get, is rarely very restful. It is usually sleep that will send me to the ER for a shot: if I've gone too long without any appreciable sleep, I can't fight the pain. I get a shot, the pain comes down to a tolerable level
(it never really goes any entirely anymore) and I can get enough sleep to combat the pain when it returns. It's really the best I can hope for these days.

For now, it's almost four in the morning, and I'm no closer to sleep than I was at midnight. Que sera, sera.

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