Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, December 13, 2007

Narcoleptic Insomniac

Is there really such a thing as a Narcoleptic Insomniac? Yes, there most certainly is. I personally know someone who suffers from this condition. How does this happen? Let me tell you a story.....

Since sometime around 15 or 16 I've had a horrible time staying awake. Lots of teenagers are like that though, so I'm sure my parents didn't think much of it. I can remember coming home from school and taking loooooooooooong naps. I think most teenagers do. But there were times when I was also a really busy kid, with track meets and chior concerts, and all that stuff.

Before I knew it, I was a young mom. Aren't all moms of 2 toddlers really tired all the time? I loved when the babies were still on 2 naps a day, because it meant I could take one too! I was lucky that both my boys were nappers!

By the time I was in my mid 20's I was discovering that driving was a bit difficult. Well, the driving wasn't, but staying awake while I was driving sure was tough! Along came Angela. By then there were 5 kids in the house and I was exhausted all the time. Who wouldn't be? But I certainly wasn't short on sleep. I was getting 8-10 hours a night and would wake up in the morning thinking, "If I can just make it till 10:00 a.m., I can take a nap with Angela." Waking up planning your naps isn't a good sign.

When Angela was around 2 or so, my friend Joanie said to me, "You sleep more than anyone I know. I don't think it's normal. Did you know that most adults don't take a 3 or 4 hour nap every day?" (well, I knew they didn't, but I thought they probably WANTED to!) She told me there was going to be a special on 20/20 about sleep disorders, so I watched it. It mostly talked about the truckers that spend too many consecutive hours driving and the results of it, but it also talked about sleep studies, and narcolepsy. I could identify with a lot of the stories. By that time in my life driving more than 10 minutes at a time was very difficult. Angela needed lots of trips to the children's hospital which was 70 miles one way, and I'd often have to pull over 2 or 3 times so I could close my eyes. The story gave a website address of the National Sleep Foundation where you could take a screening test to find out if you should see a sleep specialist.

I took that test, and up popped a warning box, "You should not be operating a motorized vehicle. You need to be sleep by a sleep specialist as soon as possible." Wow...hmmm...ok. So I went to a specialist, had a sleep study, and was diagnosed with Narcolepsy. (a year later my then 15 year old was diagnosed as well.) There is medication you can take for Narcolepsy, but it's extremely expensive and I don't currently have health insurance so I've been off it for quite some time. But it's very strange. Even when I have the medication I don't really want to take it, because like most of us who have Narcolepsy, we LOVE sleep. Also, the medication causes migraines. If I catch them soon enough I can stop them before they render me incapeable of opening my eyes in the daylight, but I'm not always able to catch it.

Most people who have Narcolepsy will tell you people think they are lazy. It's tough to get things done when you really just want to sleep. You have ZERO ambition. BUT...when you take the medication it's like taking speed and you can whip around getting the most amazing amount of stuff done. I often forget just how awake I can be if I'd just take a pill. But it's not an abnormal amount of awakeness (is that a word?) It's a NORMAL amount. Like what everyone around me probably feels like and so I'm shocked at how much they can get done in a day. People with narcolepsy also have trouble with weight gain, because for us, eating out of boredom is also a way to stay awake.

So where does insomnia play in here?

Well...I'm at a lovely age. I'm 40, and have had a hysterectomy which means I'm hitting the peri-menopausal stage a little early. Sorry if this is TMI, but it's crucial to my story. Part of this stage is insomnia.

GOOD GRIEF! I'm so tired of being awake in the middle of the night! This is silly! I can't really get anything done or I'll wake up the whole house. Take tonight for instance. I went to bed at 10:00 like a normal person. Having narcolepsy means I fall asleep within seconds of my head hitting the pillow. But at 11:30 the dogs started barking at something outside (damn deer!) I went back to bed but I knew it was hopeless. I layed there wondering if I could pull the tree out of the storage room, get it up and decorated without waking anyone. Then I remembered the puppy in the basement and knew that idea was out. She'd be barking her head off. So I did my usual and went to the computer to find something interesting to read. It's now 2:00 a.m. and here I still sit. Not even the slightest bit sleepy. I could be decorating a tree, or painting the kitchen, or something else productive, but all I can think about is how tired I'm going to be tomorrow!

Angela is staying home from school since she's not feeling well, and I have a dr. appointment to get to. The lack of sleep is catching up with me and I know I'm going to have a hard time driving, much less getting anything else done. I've gotten to the point that if I have even ONE appointment during the day I feel like I've run a marathon and could sleep for days. It's very frustrating. Not only for me, but for Dean.

So...that's how a narcoleptic insomniac comes to be. Now, I'm going to try going back to bed and see what happens! Goodnight!

3 comments:

AmberKTP said...

Did I write this??? lol Seriously, other than the fact that I only have 1 child, this sounds just like me.

Nykreim said...

Wow, funny I would come across this at 4:30 in the morning because I can't sleep! My story is so much the same too, 4 kids instead of 5!

Rebel_Wrangler said...

Unfortunately, not everybody loves sleep with Narcolepsy. I got into so much trouble with it when I was younger, with family, school, and even work. My girlfriend is an insomniac and doesn't fully understand, that sleep is like a constantly set up trap. Like I'm dangling my feet over a bear trap, just waiting for me to get relaxed enough to grab me. I also am one of those narcoleptics that awakes extremely startled rather often. So I will fall asleep in the middle of doing something, or intensely buried in thought, and awake hours later halfway through that same thought. I also commit "automatic actions," which means I can perform basic tasks without awaking. IE: Going to the bathroom and back to bed, walking from living room to bedroom, detouring for a drink of water sometimes, all with no recollection.

I did love this story though! It always comforts me to not be alone with this.