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Whaddya Mean, Disabled?
Dec. 22nd, 2003 03:46 pmWhen 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.
