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Tuesday, February 15, 2011

I am also suffering from narcolepsy. My main prob is not to be able to wake up and to be unconcious about for one or two hours after waking up. So I am being late everywhere and oftenly I fall a sleep after waking up. Do you have any advice

Well, as you can probably tell, you're not the only who is late! (I really have to find out what is happening with my formspring e-mails!)

It is quite common for first thing to be one of the most difficult times for us narcoleptics. I personally find it VERY difficult to get myself into anything resembling "awake" and stay there.

I can offer some tips, but unfortunately, they usually tend to be hit or miss depending on the person and their individual symptoms.

First off, and I ALWAYS say this...stick to a routine. To bed at the same time every night (even if you don't feel ready), and up at the same time every day, even weekends. Your body will get used to the routine and eventually it definitely begins to wake at the right time, even if it is still difficult.

Secondly, practice other good sleep hygiene...no eating within a few hours of bed, no computer within two hours before bed (messes with melatonin production), no eating, tv watching, or other "non-sleep" activities in bed. That's probably the hardest.

Third, try setting a few alarms. They have loud ones, vibrating ones, singing ones, talking ones, bright ones...hopefully one out there will be enough to wake you. Set one every half hour (or set a snooze time if it allows) starting BEFORE you have to be up.

You can also try leaving your shades open or ask someone to come open them in the morning. The sun actually DOES help you wake up, and it will affect you even if you are awake yet to see it.

Sometimes, for me, it is a matter of forcing myself out of bed and away from it, even if I don't feel ready. It's much harder (though not impossible) to fall asleep when walking around the house or doing simple chores (no one will be hurt if the dishes end up put away in the freezer, but the action may help you get going).

If you take medication, set an alarm for about an hour before you get up. Take your medication, then go back to sleep for a bit. It will give the medication time to get into your system.

Sometimes, taking a shorter acting med in the morning, like Ritalin, can give you enough of a boost to get started, and then you can take an extended release formula when you get up to help you through the day.

Also, try scheduling appointments during what is usually your most awake portion of the day. For me, this is usually between about 11 and 3. I still have a tendency to lose time and be a little late, but not nearly as late as if I schedule outside of those times.

Try explaining this condition to doctors and other places you may need to be. Let them know you are not trying to be disrespectful, that you understand their time is valuable and you do not expect them to be happy about it, but you try your best. Call as soon as you know you will be late. At a doctor's office, this may mean they can take the next patient before you get there, so you can still be seen. If you have the time, ask them if they may be able to squeeze you in if you are willing to wait, and don't be difficult about rescheduling if necessary. Even if the reason you are late is not something you can control, being late is still YOU, and you can't act like it was someone else and you haven't affected other people's schedules.

If you have school, go for later, shorter classes.

As for someone to call you to make sure you are up.

Coffee!

Patience and acceptance: you can get things manageable with patience and research. Talk to other PWN like me who know what you are going through. It takes a long time, but accept your limitations and work within them...you may find it actually expands your ability to do other things sometimes. Try to learn to say no and not feel guilty. We, as human beings, can't do and participate in everythiing, and we definitely can't with a disease like narcolepsy. True friends will make an effort to understand.

I wish you luck, and if you think of other tips on your own, please be sure to let me know so I can share them with others!

Ask me anything

2 comments:

  1. Thank you so much for speaking about this
    problem..
    When I say I have narcolepsy usually people can
    accept I can fall asleep, but don't believe that my lates belong to it..
    I know it does, because my life is complitely
    influenced by narcolepsy..but often I wonder
    if I'm just searching for an excuse to justify
    my faults, and I really feel guilty for that.
    The result is that I have many many problems
    with my job, and I keep people I love away from me, because I have the feeling that I always hurt them with my "laks of rispect".
    I'm still going to try to be on time, but now
    that I know I'm not that bad person I was used to think, I feel really better!
    I know there isn't a real solution, and that this problem will come again and again..but my feelings in everyday life will be better!
    Sorry for my English (I'm Italian), and thank you so much!!

    ReplyDelete
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