Narcoleptic Insomnia

Most narcoleptics don't sleep well.

Ironic, isn't it?

A common misconception of the disease is that a narcoleptic must get tons of sleep - in fact, too much sleep. Almost like a "too much of a good thing" syndrome.

Wrong.

Narcolepsy isn't about getting too much sleep, it's about being sleepy at the wrong time - among other things. At times, my husband can't sleep. It's really like a form of insomnia sometimes.

It took me years to get that. Did I say years? I meant YEARS. As in, recently I finally said, OH! Okay, I get it.

My husband gets up around 3am almost every morning. Regardless of what time he goes to bed, he wakes in the wee hours of the morning, stumbles around half conscious, and eventually crashes again. He tosses and turns, talks and moans, and finally wakes, nearly just as groggy as when he dropped off the night before.

Narcolepsy is sad that way. Just imagine, you're always sleepy, but when you can sleep, it's lousy. How messed up is that? We're in the process of finding medication that will help him to sleep, but in the interim, he suffers sometimes. We find that it helps to have:

• A quiet, cool, dark bedroom
• An alarm clock set well in advance
• Permission for him to fall asleep whenever he can (meaning I don't get mad if he falls asleep unexpectedly)

With things already in place, whenever he falls asleep, it's okay. Of course, this only works when he actually falls asleep in his bed. Many times he dozes where he is - a chair, the couch, the kitchen table... I hate waking him. After all, he needs whatever sleep he can get, no matter where it is.

Taking Advantage of A Person With Narcolepsy

I take advantage of my husband's illness sometimes.

I never really thought about it before, but tonight, I noticed it and felt a little shocked... and embarrassed.

The other day, my husband came into the room I was in to ask if we could talk about something. It was no big deal, but I was busy. Okay, I wasn't technically busy. I was watching American Greed (I love that show) and I just didn't feel like talking about what was on my husband's mind. See, earlier I had told him about some interesting research that I'd done - re: narcolepsy, of course. We agreed to discuss it later and well... it was later. But I didn't want to talk about narcolepsy. We always talk about narcolepsy. However, rather than tell that to my husband, I said, "Sure, just give me 5 minutes."

What's so bad about that?

The truth is, I had no intention of talking to him five minutes later. He went to wait for me in another room, and within a minute, he'd fallen asleep. Just like I knew he would.

Ironically, the exact same scenario used to infuriate me. When we were first married, my husband would often fall asleep while waiting for me. I would say defensively, "I know I didn't take that long!" Now here I was, counting on his sudden sleepiness to finish watching a television show that I could've watched any time.

When I checked on him later, he was still asleep and I felt a little twinge of... guilt. "How mean am I?" I thought to myself. I'd be furious if I knew someone else was taking advantage of my husband's sleep disorder, even in a small way the way I just had. So I decided not to do it again. The next time I don't want to stop what I'm doing, I'll be honest and tell my husband so. Better yet, I'll just give him the time.

Narcoleptic Does Not Equal Lazy

A narcoleptic may be tired, but that doesn't mean that they can't get things done. The other day my husband did chores, completed a repair on the car, ran errands, took our daughter on an outing, and was able to stay awake at the dinner table.

Image courtesy of Ambro/FreeDigitalPhotos.net

When we moved, my husband pushed himself all day in the hot sun until our large moving truck was empty and all of our furniture was (roughly) in place. Before the group of people we had helping us left, he passed out. Literally.
He collapsed, unable to get up, and slept for hours right where he'd given out. It wasn't until that evening that he was able to struggle to take a shower and collapse again - this time into bed.

So although my husband can at times force himself to keep going when all he wants to do is sleep, it isn't good for him when he does. It only intensifies his symptoms and sometimes makes his cataplexy more severe.

Although the temptation may be to push himself until he drops, it just isn't a lasting solution. The recovery is just too taxing.

Narcolepsy Is Absolutely Not Contagious... Right?

I've been very tired lately.

It's funny how a lack of sleep is the last thing we consider when feeling unwell. I considered everything but sleeplessness as a reason for my malaise. Then one day - I fell asleep.

I never fall asleep, even when I should. But this day, I fell asleep in the middle of the day, quite unexpectedly.

Apparently, I need more sleep.

It's makes perfect sense. Sleeping with someone who can never get a good night's sleep is bound to affect their partner. Not to mention we have a toddler who sometimes decides to wake up at 3am. It's hard to predict when I'll go to bed though. For instance, last night my husband called home around 11:00pm to tell me that he'd have to nap before he drove home. Worried, I waited up for him. I didn't get to bed until 2am. Our daughter gets up at 6.

If I'm going to be an advocate for my husband, I'm going to have to take better care of myself. Isn't that the first rule of care-giving? The caregiver must take care of self first. That's going to be hard for someone who considers her family's needs before her own and feels guilty if she doesn't.
For starters, I've begun painting again. I started a series of ACEO (Art Cards, Editions, and Originals - art the size of baseball cards) with different themes, including narcolepsy.

I feel better already.