To Sleep, Perchance to Dream
Feb. 10th, 2005 09:44 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lydy"...were it not that I have bad dreams."
Well, not so much bad as insufficient.
For those of you out there in Candyland, who haven't been subjected to my tales of misery and woe, of late, that damn sleeping sickness has gotten worse, again. It is, in fact, threatening my job, again. I've been sleeping through my alarm, getting in an hour, or even two hours late, and in one memorable case (well, I don't remember it), I fell asleep at my desk. I'm told that my boss walked me to the break room where I slept on the couch for two hours. I don't remember any of it. Evidently, they noticed I was asleep because I was snoring. Deeply embarrassing.
Want to know how embarrassing this can be? Last summer, I was hanging out in the Tor office, waiting for Patrick and Teresa to finish up their work day, so that we could go out and do something -- I don't remember what. I was reading The Viscount of Adrilankah on my PalmPilot, all cheerful like. I'm sitting in the main lobby (which didn't look like much, really, since they were in temporary space, but still) and I gather I fall asleep. The first thing I know about it, Teresa is gently shaking my shoulder and suggesting that I move into her office, away from prying eyes. Evidently, some one had kindly called Teresa and said there was a girl snoring in the lobby, and wasn't she a friend of Teresa's, and shouldn't maybe something be done? Didn't threaten my job, but it was way more embarrassing. (What did I do when I got to Patrick and Teresa's office? I sat down on the floor, cross-legged, rested my elbows on my knees and my chin in my hands, and went back to sleep.)
I do realize that there are many worse disabilities. However, I would just like to say that I really hate mine.
So, being a sensible person (yeah,right), I went to see a neurologist at Abbott Northwestern Neuroscience Clinic to ask for another sleep study. This would make it the second in two years, and the fourth, total. In case you didn't know, this is a lot of sleep studies for a person, even a person with sleep apnea. I think it might even be rather more frequent than most narcoleptics have to put up with, but only knowing one narcoleptic, I really have no idea.
I went, I slept under supervision. To be truthful, for a moment, I don't really mind that all that much. The only thing that's actually annoying is that I have to wear a nightgown or something similar. I do not normally wear clothes to bed. On the other hand, it's not nice to embarrass the tech. I went to bed at my usual time, wired up like a Christmas tree, and was woken up the next morning. They've improved the wiring process somewhat, which was nice. The best bit was that they didn't use what amounts to a soft clothes pin on my index finger to keep track of my pulse (I think that was it) during the night. No matter how gentle the pressure is, by morning it hurts like the devil from the constant compression. This time, they had some cool sensor which they simply taped on to my finger. No compression.
The next day, they did nap studies, which I do mind. Every two hours, they put you to bed to see if you fall asleep. If you do, they wake you up in 15 minutes. If you don't, they wake you up in 20 minutes. By the second or third nap, you're tireder than if you'd had no naps at all. What they're measuring is how quickly you fall asleep, and whether you drop into REM sleep during those naps. REM sleep is an indicator of narcolepsy. I never hit REM during my naps, but I fell asleep abnormally quickly. I also had a couple of episodes where I had a very difficult time staying awake between naps.
Monday last, I saw the doctor, who showed me all the cute charts and graphs (but no picture with circles and arrows and a paragraph on the back of each one telling what each one was to be used against me -- basically pictures of sleeping people are pretty dull). The average human being needs approximately 20% REM sleep per their night's rest. My score? 2%. No wonder I'm falling asleep at my desk. And other places. The graph also showed that I spent most of my time in the first and second stages of sleep, rarely reaching deep sleep. Also, the graph was way jagged; it looked like a comb. Normal people have something more like a sine wave.
Diagnosis? None. He said that he would write a letter to my psychiatrist, suggesting some drugs we might try, and asking her if there were any she could take me off of. This is pretty sensible. These symptoms are real consistent with negative side-effects of many psych drugs.
I like this guy, Dr. Trusheim, a lot better than the doctor I saw last time, whose conclusion was that I just wasn't getting enough sleep. He said that I shouldn't take anything to help stay awake, since that might trigger a manic episode, but drinking a lot of coffee might help, and going to be earlier was really the only answer. He did not confer with my psychiatrist at all. Now, he's one of the foremost neurologists in the country working on sleep disorders, so I find myself wondering, was I just not interesting enough, or were my brain wave results completely different two years ago? (I intend to call the hospital and ask for a copy of that sleep study. I know I had a copy, but my filing system isn't, and I have no idea how long it would take me to find it. Fifteen minutes? Fifteen hours? Easier to ask them to fax it.)
I see my psychiatrist next week, so we'll see what she wants to do. On the one hand, it feels good to be doing something. On the other hand, I'm dreading the something. Changing psych meds is a big deal. I mean, we could easily be talking a year of my life spent in various forms of emotional hell, titrating various chemicals in an attempt to find something that will work without killing me. I really, really hate messing around with my drugs. On the other hand, I need to find an answer to this falling asleep thing. I got up this morning, fed the cats, fed the fish, poured myself a cup of coffee, sat down to drink the coffee and watch the fish for a bit, just like I always do, every morning that I'm not running disasterously late. I just keeled over, and woke up at the time I should have been at work. I was an hour and forty-five minutes late. On the gripping hand, maybe I'll get my mind back. It's been rapidly going to mush, lately. The other day, I lost almost half my times tables. Admittedly, I've never had them down cold, but I was consistently getting four times eight wrong, and six times three. My verbal skills have reached a new low, and I'm having more trouble shifting from internal to external information flow. I rarely understand the first or second word that someone says to me because it takes me too long to readjust to listening to speech as opposed to whatever my brain had been doing. I've been mishearing things a lot more often, too. Don't ask me, maybe I'm just becoming deaf. It doesn't seem like it, though.
I spoke to a career counselor, last week. I hate my job, I'm insecure about being able to keep it, and I need a job with flex time. I have no ideas about what to do. I've never had any imagination when it came to jobs. I need something with flex time and insurance, and if I'm going to bother changing jobs, it should really be to something I like more than what I'm doing now. Her suggestions? Read the papers and other places that list jobs. Like I've never done that before. I can't see what I'm like at work. When I read a job description, I can't tell if I would be any good at it. I can tell if it's a no-hoper, but the rest? No clue. She also suggested that I look into disability. *snort* Maybe I should. Maybe they would help me.
My girlfriend Beth suggested that I find a rich guy to marry. You know, on an arrangement sort of basis. I think I only know one unmarried rich guy, and I a) don't think he'd marry me, and b) I'm not sure if the consequences would be worth not having to work, anymore. Marrying people's weird. No matter how much you tell your friends and family that nothing has changed, people will insist on treating you differently. I found that out almost 20 years ago, when Nigel and I got married as much because it was a lark as anything else. People are strange. Man, you should have seen how his mother and grandmother reacted. It was like a musical farce, the way they fell over each other intalling us in the only double bed in the house (after having been living together for something like six years). The funniest part was that the boxsprings were noisy. I mean, rolling over made it sound like you were having wild, jungle sex. Even if you wanted to, you couldn't have concentrated for all the noise. Bit I appear to be tangentalizing.
So, that is my tale of woe. Honest, I don't really need sympathy. I'm like, good with it, inso far as one can be good with something this annoying. However, I bitch recreationally, and I think that this is a truly monumental thing to bitch about. Great material.
Hey, if anybody has an idea of gainful employment that I might be good at, and not hate passionately, email me, would you?
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Re: To Sleep, Perchance to Dream
Date: 2005-02-11 05:21 am (UTC)have you ever read what color is your parachute by richard bolles? i haven't read it since 1994, but i really liked it then, and it's been quite helpful to various people to whom i've recommended it regarding finding more fulfilling employment.
Re: To Sleep, Perchance to Dream
Date: 2005-02-11 06:06 am (UTC)I keep on meaning to. But no, I haven't. Truth is, I just hate this whole thing. I'm tired of working, always being behind, short on sleep, short on time, short on life -- people tell me that when you like your job, things aren't nearly that, well, short. I wouldn't know. Be interested in finding out, but I wouldn't know.
I'll chase down the book, I guess. What help? What harm? Chicken soup for the job search.
Re: To Sleep, Perchance to Dream
Date: 2005-02-11 07:59 am (UTC)Okay, so I've been working with a spin-off of Jungian psychology for a couple of years, so take this as it fits. Does that sentence sound to you like part of an explanation for the sleeping? (Not to rule out drugs, etc.) If life feels like an economy of scarcity, and time and sleep are scarce, it makes sense to me that the body would grab opportunities to sleep. And bodies are selfish--they don't care if the times they grab to sleep (or to cramp up or to have an allergic reaction or to get sick) are inconvenient or inappropriate.
If I were in your shoes, I'd take a look at what that economy of scarcity was like for me, and how I could explore it ...
Meanwhile, many hugs and good luck!
Re: To Sleep, Perchance to Dream
Date: 2005-02-11 06:46 pm (UTC)My life is an economy of scarcity. I'm depressed, almost all the time. One of the costs of that is that it takes me a great deal longer to start things, simple things, like house cleaning, scheduling, deciding what to have for dinner -- darn near anything. Time is an incredibly valuable commodity. The loss of time costs money, peace of mind, social contact, sleep, hell, lack of personal hygiene. Medicated, things are much better now. It used to be that getting up off the couch and getting to work was a major undertaking, and often the only thing I managed to accomplish in a day.
I'm working on all of this, of course. The lack of sleep is probably tied in, but I don't think it's a simple psychological link. I think that there's a lot of physiological stuff associated. Seriously, 2% REM is a BAD thing. I sincerely doubt that's just because my life is a mess. That looks like bad biochemistry to me.
Of course, this leads us into the whole question of soma vs. psyche, and that gets abstract darn fast. What I know about myself is that tweaking the neurotransmitters via modern drugs has been the most effective approach. What that really means is an interesting excercise, which I leave to the reader. Me, I'm just grateful I didn't live a hundred years ago. Or even fifty. Med tech good.
Re: To Sleep, Perchance to Dream
Date: 2005-02-11 07:40 pm (UTC)Nothing in the above was intended to imply any lack of physiochemical causation, any disrespect for your meds, or (heaven forfend!) any implication whatsoever that you aren't wise about the ways of your body.
Re: To Sleep, Perchance to Dream
Date: 2005-02-11 08:42 pm (UTC)I'm not really sure what you mean by "If I were in your shoes, I'd take a look at what that economy of scarcity was like for me, and how I could explore it ..." Could you explain further?
no subject
Date: 2005-02-11 05:24 am (UTC)When I married my first husband people went all weird like you said, but when Jordin and I married it didn't seem to change much of anything or anyone. A lot's changed in 20 years. I'm just sayin.
You have my phone number and email and IM and stuff if you need me.
HUGS
MKK
no subject
Date: 2005-02-11 06:50 am (UTC)Earlier than next Tuesday? You must be joking. I think it may be the latest drug she put me on, Lamictal. Although I've had word troubles for a couple of years, now. They've become a lot more slippery. Like, isn't there a word for going off on a tangent while writing that starts with a "d" but isn't divert? I couldn't think of it (assuming there is one) which is why tangentalizing happened. I'll talk to Karen on Tuesday, and we'll see. Hell, the problems with language and stuff could easily be because of the lack of REM. Insufficient REM is known to make you stupid.
no subject
Date: 2005-02-11 12:15 pm (UTC)no subject
Date: 2005-02-11 06:48 pm (UTC)That is precisely the word I hunted for for a half an hour, yesterday. I guess I'm glad to know that it exists. It's disturbing that I really couldn't come up with it, though.
no subject
Date: 2005-02-11 06:04 pm (UTC)As you know, Bob, I have that word slippery thing too, nouns dammit. They've taking to hiding from me. But what you're missing is a verb and that's really not a good sign. (divigate? diverge?)
Lack of REM can do lots of bad stuff incuding induce psychosis. Yeah talk to the shrink about it.
MKK
no subject
Date: 2005-02-11 06:54 pm (UTC)Yeah. Nominal aphasia is normal for people our age. Nouns tend to just go poof. There's away around it, though. If you talk around the noun, like, "Big box thing, with doors, it goes up and down ---" the word will typically pop up: "Elevator!" This does not seem to happen with verbs, at least not for me.
I believe that losing verbs is actually a different problem than losing nouns, and somewhat more serious. It's possible that the psych drugs really have rotted my brain. I said, years ago, that if that happened, it would be worth it, just for the few years of living without the hammering misery that I'd been suffering for so many years before. If my brain really is going, I wonder how much comfort that will be. It is a risk I knew I was taking. I guess we'll just have to watch as the saga unfolds. (Mind, I'm still pretty damn smart, and I still have better verbal skills than 90% of the population, and I'm afraid I'm merely being accurate here, though I cannot pretend that I'm not proud of this. Still, a downward trend is disturbing.)
no subject
Date: 2005-02-11 05:55 am (UTC)Woo! Did it also not have a 15-watt red light bulb in it, or am I the only one who had that in the clothespin thingy?
no subject
Date: 2005-02-11 06:53 am (UTC)I always did wonder what that light was for. Nope, no light this time, either. I think they issue all the clothespins with red lights, though. Perhaps it's meant to be cautionary. Caution: wearing clothespins, even padded ones, hurts.
no subject
Date: 2005-02-11 06:54 am (UTC)no subject
Date: 2005-02-11 06:56 pm (UTC)I didn't find the light distracting. My problem is I can't stay awake. Falling asleep is not a problem. Bam. Pow. Out like a light.
no subject
Date: 2005-02-17 12:35 am (UTC)no subject
Date: 2005-02-11 03:10 pm (UTC)This isn't something I've heard about as working, but it doesn't seem likely to hurt.
no subject
Date: 2005-02-11 06:57 pm (UTC)no subject
Date: 2005-02-11 03:32 pm (UTC)Personally, I don't like the idea of marrying for the sake of economic support. Personalities are involved; how closely entangled can you stand to be with this or that particular person? Maybe it works for some people but it seems chancy to me.
no subject
Date: 2005-02-11 07:04 pm (UTC)I have all sorts of different emotional values that I put on sex, depending on the circumstances and the person. One night stands and long term relationships, and many of the things in between. They are what they are. Paying off a debt is merely a socially sanctioned form of prostitution. It's not something I'm deeply skilled at, but I'm willing to learn. I'm too old to turn pro, these days. There was once a time when I could have made pretty good money at it. Little problems, like it being illegal, and my husband being totally freaked out by the idea, were what kept me from giving it a go. Sex for money is one of the oldest transactions ever. Even bonoboes indulge in behavior like that, only they use food instead of money.
no subject
Date: 2005-02-11 07:36 pm (UTC)I realize that not everyone (it seems hardly ANYone I know) feels the same about these things. But, there ya go. If I run into any rich men who want to hire a wife, I can see about introducing you.
Vent Away
Date: 2005-02-11 04:44 pm (UTC)no subject
Date: 2005-02-11 06:11 pm (UTC)Good luck, I hope they figure something out soon, with the minimal amount of fussing with meds.
no subject
Date: 2005-03-24 05:11 pm (UTC)Isn't that called Delayed Sleep Phase Syndrome? Neurologist M. Smits here in the Netherlands does research & treatment of same (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10750629&dopt=Abstract). Hmmm, this page has criteria (http://64.233.183.104/search?q=cache:TKXwrqqI8KIJ:courses.brown.edu/Mary_Carskadon-PY0055_F03/sassigadd84.ppt+%22Smits%22+%22dsps%22&hl=nl) that don't quite sound like what you describe. Still, maybe your neurologist should talk to my neurologist about this?
Hi Lydy
Date: 2006-01-05 08:11 am (UTC)My name is Kenny and I am a college student in Mass. I randomnly came across your blog when I was amusing myself at work. I admit your sleeping situation seems very difficult right now, but hopefully with more medical help the misery will end. But I am really interested in your predicament, I'm about to begin my graduate work in psychotherapy, and it be an absolute honor if you allowed me to talk more with you in hopes of maybe helping you with some of the stress that has accompanied this dehabilitating affliction. I'd like to help in any way I could if possible, ud also be helping me in the process. If it would be easier to communicate here is my email NICKSEVERN@YAHoo.com.
Your pal
Kenny