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[lalpiger]

I can probably piece together this information based on posts in many different threads, but here's what I want to know: What is your daily schedule/regimen? I was diagnosed with N when I was 19, and to be honest, I haven't really dealt with it well at all. For a long time, I eschewed medicine, thinking that N wasn't "real" and that I could just fix it by getting more sleep--yes, I was feeding in to the mentality that so many people have about us. But now, nine years later, my N is out of control. The desire to sleep is overwhelming, and I often find myself in a complete fog and making no sense when I talk due to the uncontrollable need to sleep. As a teacher, this is NOT good, because I find myself losing focus and falling asleep--mostly just brief hallucinations--at my desk. I have a supportive husband and family, but they really just don't understand how debilitating this can be (their answer is always just to exercise more, even though I do intense workouts four days a week already!) and since N is so rare, I don't know anyone else with the condition. I'm trying to look into lifestyle changes (already gluten-free due to the fact that I'm also a Celiac) that will help me to manage my N. I feel like this is getting to the point that I have two choices: 1) I can allow N to take over my life, making me gain weight, feel sleepy, and become less sociable, or 2) I can make serious lifestyle changes to manage it. And considering the fact that I'd like to start a family soon, I NEED to get this under control!

 

Can you guys who feel like you're dealing with your N well give me an hourly rundown of your day? I want to know when/how often you eat, what you eat, when/how often you nap, when you go to bed, when you wake up, when you exercise, when you take your meds (and what you take), etc. I want all that info as I try to adjust my own lifestyle to better cope with this HORRIBLE illness! Sorry for the super long post; I've just been feeling very isolated (and, I'll admit it, kind of sorry for myself) lately. 

 

Thanks!

-Liz in KY

[munky]

Keep in mind, I work 12-hour shifts at night. And an hour-by-hour rundown just isn't going to happen, in my case. I don't keep track of my life that well.

 

So, work nights are Wed-Fri one week, and Wed-Sat the next. This is the schedule:

 

09:00-10:00 AM: Bed.

04:00 PM: Wake up.

04:30 PM: Eat dinner (thanks, Mom!)

05:00 PM: Get dressed, pack lunch, snack, etc.

05:30 - 05:45 PM: Take meds (Nuvigil 250mg) and leave for work (it's an hour-long drive).

07:00 PM - 07:00 AM: Sit on my butt and stare at a screen, hoping something will break and give me something to do.

(11:00 PM : Snack, usually some dried and/or fresh fruit and a granola bar; 04:00 AM: Lunch, which is leftovers from dinner)

08:00 - 08:30 AM: Get home. Shower.

Repeat. Except on the morning after my last night of work (Saturday or Sunday, depending on the week). Those mornings vary. Sometimes, my mother and I will go out and do things, run errands, or do some chores around the property. On those days, I sometimes don't get to bed again until 03:00 AM the next morning. Most times, though, I sit in my recliner and pass out. If I'm lucky, I'll wake up sometime in the evening.

 

Tuesdays, I have an on-campus biology lecture/lab.

08:30 - 09:00 AM: Wake up. Do pre-lab. Eat something. Get dressed.

10:30 - 10:45 AM: Take meds (Nuvigil 250mg). Leave for school. Again, an hour-long drive.

12:00 - 02:00 PM: Lab.

03:30 - 03:45 PM: Get home.

 

From there, it's ... whatever. Read, watch tv, chores, sleep ...

 

On non-work days, I pretty much sleep whenever I need to, around doing various chores/running errands, homework, etc., and generally do not take my meds. In fact, I started out not taking them on Tuesdays, since the only thing I do is my bio lab, but after the second time I had trouble making it all the way home, I decided to just go ahead and do it.

 

I am supposed to take a 20-minute nap every 4 hours at work. I haven't been, because even when I manage to get to sleep (I have a hard time with that for the first nap), I wake up feeling worse than I did when I went to sleep, and end up fighting sleep attacks through the end of my shift. Currently hoping that changing the time I take my meds will help me avoid sleep attacks without the naps. I used to take my meds with dinner, but found out that for shift workers it's recommended you take it an hour before your shift starts--and dinner is close to 3 hours before my shift.

 

And, yes, you'll see there's no exercise in that list. What exercise I get is in the chores. We're working on setting up a little hobby farm, so there's prep work, some minor building, stuff like that. It isn't much, but with the distance between work and home and the 12-hour shifts, I don't have a whole lot of time to fit it in. I'm supposed to get 7 hours of sleep every day, but sometimes I'm lucky to get home early enough to do that, and I can't just walk in and fall into bed.

 

Also, no special diet, though we do try to eat healthy. I hate vegetables, but I manage to choke some down with every meal. We try to eat organic. I try to avoid dairy (lactose intolerant), but am not always successful because I adore cheese. And banana pudding. Mom's supposed to have reduced sodium, I'm supposed to have high fiber ... but we don't worry ourselves over it, beyond trying to make choices at the store that will fit those programs.

 

Dunno how helpful that is, but there you go.