Whaddya Mean, Disabled?
Dec. 22nd, 2003 03:46 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lydyWhen I was much younger, I thought that narcolepsy sounded like a funny disease. The actual effect on somone's life of falling asleep involuntarily during the day never occurred to me. It didn't even dawn on me that it could make reading difficult. What's so bad about falling asleep?
I don't have narcolepsy. They're just sure of that. They've done 3 or 4 sleep studies, one of them a 2 day study, and they're absolutely, positively sure I don't have narcolepsy. What I have is a need for at least 9 hours of sleep a day. Just a small lifestyle change, really, not the least bit debilitating. What are you whining about? Oh, here, have some Provigil, that might help some.
Assuming they're right, the psychiatrist, the neurologist, the pulmonologist, and the GP, what does that leave me? Count out the hours of the day with me.
I get up at six-thirty a.m.. That means that I have to be in bed, asleep, by nine-thirty p.m. to get nine hours. I can't even watch Law and Order, much less the ten o'clock news -- not that I do watch the 10 o'clock. news, but that's always been my cut-off for calling people. If they could conceivably be watching the evening news, then it's reasonable to assume they're awake, unless you know otherwise. So, to bed at nine-thirty, I'll tape Law and Order and watch it some other time.
The alarm clocks start rining at six-thirty. I need to walk out of the house at seven-fifteen to make the bus. Forty-five minutes to wake up and dress. The two alarm clocks, not to mention the room light which is keyed to one of the alarms, are usually sufficient to wake me up -- or at least hit the snooze bar.. Ah, that dangerous snooze bar. I have managed to snooze until seven o'clock, and still make the bus, but it's not a fun way to start the day.
We will pass lightly over the work day. It's a day. With luck, I don't fall asleep at my desk. It's less frequent, now that I'm taking Provigil.
I can get home at five-thirty if I really push things at the end of the day, and leave five minutes early. Mostly, I don't. Most nights, I get home between six and seven. Call it six o'clock. Le'ts be optimistic..
Walk through the door, shed my coat, feed the fish, take off my shoes, take off my bra, and consult with DDB about dinner plans. Call it thirty minutes, though it's usually longer. We're being optimistic, though.
An hour for dinner is really not unreasonable, given that I'm either preparing it or going out. Now it's seven-thirty, and there are two hours of my day left. If we went out for dinner, there may well have been errands. A trip to the pet store for cat litter will cost another thirty minutes, and my time is slipping through my fingers. On the other hand, running out of kitty litter is not a good thing.
Let's pretend I actually am going to lose that weight that I actually do want to lose. Thirty minutes of excercise a day, minimum, is what they say. But it's an hour to bedtime, and I that's one of the reasons why I almost never do any excercise. But hey, if I got in the habit, I could watch Law and Order and West Wing in half-hour installments. Hah!
So, I've been a good girl, I've gotten kitty litter, and I've excercised. It's eight-thirty.
I make coffee for the next day, set the timer, feed the cats a little canned food, take my night-time drugs, set the alarms, and toddle about in my room trying get ready for the next day. Put the cell phone on the charger, find clean underwear and socks, that sort of thing. If I hurry I can manage to do that in 15 minutes, and shower in the other fifteen minutes. Thirty minutes left.
What shall I do with this generous allotment of free time? Fold laundry? Clean the cat boxes? Change the sheets? I daren't check my email, I'll be on the computer far longer than the permitted half-hour. I can't do a water change on one of the fish tanks, it's likely to take longer than that. If I've got some sick fish who need daily changes, well, I'll be getting to bed late.
If anything goes wrong, if anything is delayed, I get to bed late. If I have to change the cat boxes, rather than just scraping them, I'm on penalty time. If I have to do a load of laundry, I'll probably be over-time unless I'm very clever with my timing. And if I want to do anything for myself, there is no time in the day for it. An hour's bath instead of a shower? Nope. Finish a good book? Nope, better not so much as crack the cover. There'll be the bus ride in the morning. Call my mother? Heavens to Betsy, what a bad idea.
So here's the thing: I am not disabled. I only have to make some modest adjustments to my lifestyle. All the doctors say so. Except, doesn't "lifestyle" imply having a life? Anybody see any place in this schedule where I can have one?
Oh, and just to add insult to injury, I daren't drive freeways. I can no longer just rent a car and drive down to Iowa, or to Chicago, or even to New Brighton, only thirty minutes away and where my shrink's office is. Most of the time, I'm fine. But sometimes, I fall asleep. I did that once, and I do not ever, ever want to do that again. Waking up to find that you are doing 80 mph in the median is one of the most terrifying things that can happen to a normal person. Or even the stranger ones, like me.
I don't have narcolepsy. They're just sure of that. They've done 3 or 4 sleep studies, one of them a 2 day study, and they're absolutely, positively sure I don't have narcolepsy. What I have is a need for at least 9 hours of sleep a day. Just a small lifestyle change, really, not the least bit debilitating. What are you whining about? Oh, here, have some Provigil, that might help some.
Assuming they're right, the psychiatrist, the neurologist, the pulmonologist, and the GP, what does that leave me? Count out the hours of the day with me.
I get up at six-thirty a.m.. That means that I have to be in bed, asleep, by nine-thirty p.m. to get nine hours. I can't even watch Law and Order, much less the ten o'clock news -- not that I do watch the 10 o'clock. news, but that's always been my cut-off for calling people. If they could conceivably be watching the evening news, then it's reasonable to assume they're awake, unless you know otherwise. So, to bed at nine-thirty, I'll tape Law and Order and watch it some other time.
The alarm clocks start rining at six-thirty. I need to walk out of the house at seven-fifteen to make the bus. Forty-five minutes to wake up and dress. The two alarm clocks, not to mention the room light which is keyed to one of the alarms, are usually sufficient to wake me up -- or at least hit the snooze bar.. Ah, that dangerous snooze bar. I have managed to snooze until seven o'clock, and still make the bus, but it's not a fun way to start the day.
We will pass lightly over the work day. It's a day. With luck, I don't fall asleep at my desk. It's less frequent, now that I'm taking Provigil.
I can get home at five-thirty if I really push things at the end of the day, and leave five minutes early. Mostly, I don't. Most nights, I get home between six and seven. Call it six o'clock. Le'ts be optimistic..
Walk through the door, shed my coat, feed the fish, take off my shoes, take off my bra, and consult with DDB about dinner plans. Call it thirty minutes, though it's usually longer. We're being optimistic, though.
An hour for dinner is really not unreasonable, given that I'm either preparing it or going out. Now it's seven-thirty, and there are two hours of my day left. If we went out for dinner, there may well have been errands. A trip to the pet store for cat litter will cost another thirty minutes, and my time is slipping through my fingers. On the other hand, running out of kitty litter is not a good thing.
Let's pretend I actually am going to lose that weight that I actually do want to lose. Thirty minutes of excercise a day, minimum, is what they say. But it's an hour to bedtime, and I that's one of the reasons why I almost never do any excercise. But hey, if I got in the habit, I could watch Law and Order and West Wing in half-hour installments. Hah!
So, I've been a good girl, I've gotten kitty litter, and I've excercised. It's eight-thirty.
I make coffee for the next day, set the timer, feed the cats a little canned food, take my night-time drugs, set the alarms, and toddle about in my room trying get ready for the next day. Put the cell phone on the charger, find clean underwear and socks, that sort of thing. If I hurry I can manage to do that in 15 minutes, and shower in the other fifteen minutes. Thirty minutes left.
What shall I do with this generous allotment of free time? Fold laundry? Clean the cat boxes? Change the sheets? I daren't check my email, I'll be on the computer far longer than the permitted half-hour. I can't do a water change on one of the fish tanks, it's likely to take longer than that. If I've got some sick fish who need daily changes, well, I'll be getting to bed late.
If anything goes wrong, if anything is delayed, I get to bed late. If I have to change the cat boxes, rather than just scraping them, I'm on penalty time. If I have to do a load of laundry, I'll probably be over-time unless I'm very clever with my timing. And if I want to do anything for myself, there is no time in the day for it. An hour's bath instead of a shower? Nope. Finish a good book? Nope, better not so much as crack the cover. There'll be the bus ride in the morning. Call my mother? Heavens to Betsy, what a bad idea.
So here's the thing: I am not disabled. I only have to make some modest adjustments to my lifestyle. All the doctors say so. Except, doesn't "lifestyle" imply having a life? Anybody see any place in this schedule where I can have one?
Oh, and just to add insult to injury, I daren't drive freeways. I can no longer just rent a car and drive down to Iowa, or to Chicago, or even to New Brighton, only thirty minutes away and where my shrink's office is. Most of the time, I'm fine. But sometimes, I fall asleep. I did that once, and I do not ever, ever want to do that again. Waking up to find that you are doing 80 mph in the median is one of the most terrifying things that can happen to a normal person. Or even the stranger ones, like me.
A snark and a possibly-practical thought
Date: 2003-12-22 01:55 pm (UTC)The possibly-practical thought is that you might be able to do some life stuff on weekends.
It also sounds as though you were cutting the timing pretty tight already: even on the theoretically-standard eight hours of sleep a day, that schedule doesn't leave room for much.
Re: A snark and a possibly-practical thought
Date: 2003-12-22 01:57 pm (UTC)Re: A snark and a possibly-practical thought
Date: 2003-12-22 02:47 pm (UTC)·Up by 6:30 at the latest.
·Out the door at 7:15
·Arrive Work 8:00am or shortly before.
·Work until 4:30pm catching a moment here and there when there is little work to write or read.
·Arrive home at ~5:10pm, unless I've stopped to get food. Then it'll be 6pm.
·Take anywhere from one hour and a half to two and a half to make and eat dinner. I live alone, there is no one else to clean up or cook.
·Check my email while cooking and/or eating.
·If everything is running late then I have 1 hour to do a pick up of the apartment. If running early I might get in some time to read and write.
·Exercise... Ha! Not unless I get home way early and still have sunlight left. I don't have the room to do anything but situp in my apartment.
·Try to be in bed by 10pm so I can spend 30 minutes getting comfortable and be asleep in time to wake up in the morning to do it again.
Where do I get a life or time to date? Weekends mostly. If I get them off. Otherwise I have a day off during the week and I do practical things. I'm sympathetic, the car thing sounds really bad. But most American lives have no time in them for a life these days, or at least not much of one.
Re: A snark and a possibly-practical thought
Date: 2003-12-22 03:00 pm (UTC)Yeah. Patrick, I think it was, theorized that each time there's a major technological revolution, it takes the humans and their culture several generations to learn to live with it successfully. Distilled spirits is an interesting example. When they first became available to Europeans, there was a social disruption not dissimilar to what happened to the Amerindians when it was introduced to their culture. Over time, society develops norms and rules of thumb and standards of behavior that make things work. The most recent technological change of enormous impact is the electric light. Americans live sleep deprived. Sleep dep is one of the most common causes of automobile accidents. Second shift, third shift work is only possible because of artificial light. Working second and third shift is usually a cause of sleep dep all by itself, regardless of how many hours the people manage to sleep.
I'm just way out on the end of a curve, as usual. I get sleep dep more easily, and it impacts me more severely than most people. The only advice I can get from the medical people is nonsense, in my opinion. Bah. If I'm going to get 9 hours of sleep a night, I need to be 50% disabled so I can get a part time job and still support myself. Or better drugs. Maybe they'll give me dexedrine. Nah, I guess not. They don't never give dexedrine to manic depressives. Figures.
Re: A snark and a possibly-practical thought
Date: 2003-12-22 02:47 pm (UTC)Grocery shopping is for the weekends. Fish tanks really ought to be done on the weekends, though I tend to do them on Thursdays, for some odd reason. (I don't ever actually> get to bed by 9:30 p.m., by the way.) Laundry, house cleaning, bill paying, all those things that keep one's life from falling into wrack and ruin are supposed to be done on the weekend, too. (I don't get to them very often, either. It gets so discouraging so fast.) Oh, and socializing. Gotta fit those friends in there somewhere, and there's sure no room during the week for them. Bah.
People don't even sleep 8 hours a week, most of them. But if they start feeling really run down, they can go to bed early one night, and usually feel reasonably restored the next morning. Me, one night without 9 hours, and I'm behind and losing ground fast.
When I was on vacation, I got about a week and a half of getting at least 9 hours of sleep a night. It was indescribable. I was less depressed. My thinking was clearer, I was braver, I felt physically more fit. I came home on Tuesday, got 7 hours of sleep, and woke up Wednesday reeling with exhaustion.
Re: A snark and a possibly-practical thought
Date: 2003-12-22 06:40 pm (UTC)I don't think our culture has adjusted to the near-death of the single-income household. There's an expectation that we can work so hard and still do so much. And it's bullpuckey.
I managed to save enough that dropping down to a less-than-40-hour-workweek hasn't done too much damage to my standard of living -- but that's in part because my partner had gotten enough raises that my salary wasn't quite as critical anymore anyway. The things we gave up have been small price to pay for my peace of mind, but it took five years of focused effort to get here, and I'm going to have to get a more lucrative job eventually.
My sleep requirements are similar to yours. When I was still working sixty-hour weeks, I put as many bills as possible on auto-pay, hired a cleaning service to come in once a month, made sure I had lunch with a friend instead of at my desk at least once a week, ordered my groceries online and had them delivered, bought in bulk so I could shop less often, cried when I had no time to do my laundry, and still didn't get enough sleep and still got wistful comments from friends I was neglecting. Burnout ensued and if I hadn't quit my job I'd have gotten fired.
What little advice I can muster boils down to: try to automate as much as you can, pay delivery and other convenience charges if it shaves time off your errands, spend all your sick days and vacation days every year if your job offers them, and *critically*, ask for and accept help from friends, who will be happy to combine "spending time with you" and "helping you out" because they like being with you. It's not enough. I know it's not enough. And I ache for you, because I know it's awful.