Narcolepsy Forum Posting

Posted by PillowGirl on November 25, 2002 at 08:56:45:

In Reply to: Changing sleep schedule? posted by Barely awake on November 23, 2002 at 16:14:56:

Tired as i write this, so i hope it makes sense.... First, i take it that you have N, so I will give advice on that assumption.

Your description of tiredness sounds very typical. The majority of PWN are *always* tired to some extent (some days more, some days less, some hours more, some hours less). Having N is like a normal person having not slept for 36-48 hours. Also, N can make it hard to fall asleep (or stay asleep) at night as well.

You need to make sure that your psychologist understands this fatigue aspect of N. If they don't, then you may want to educate them or see someone else. A lot of people misdiagnose N fatigue as depression (this is not to say that you are not depressed).

Ok, so here is my advice:

First, try to go to bed and get up at the same time everyday. Try to keep it at 8 hours, or if you are the type of Narcoleptic that needs 10 hours, then schedule 10 hours. I know that it can be really hard to get up, but try (even if you only stay up for 30 min before falling asleep on the couch)

Next (and this was my psych's recommendation to me), get one of those weekly planners- the kind that they keep appointments in at the hair stylists). Spend a week or two writing down every thing you do in the time blocks (including sleep). Try to write down your energy level at the different hours too.

Now you should be able to look back over your activities and see what your energy pattern is.

Next, start to plan your schedule around your good times. Schedule this in your planner.

I have found that this really helps me to feel like i have control over things. I can schedule exercise, reading time (short bursts), naps, appointments, housework around the times that work best for me. i have about 5 "good" ours in my day, but now I can plan quality activities during them.

It really gives me direction in my life. Also, if you nap early or something, just change it in your appointment book.

This is really good data to take to you doctor as well ( and you should touch base with them about your level of fatigue).

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