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.

Let Illness Destroy Your Marriage In Ten Easy Steps

If you’re currently in a marriage where one spouse is chronically ill, researchers say that your relationship is more likely than the average to end in divorce. Health problems – especially chronic ones – typically lead to other problems: financial, emotional, romantic, etc. Put that within the framework of a marriage and voila! Perfect storm coming right up. 


Living with a chronically ill spouse for many years has given me some interesting insights – including what not to do. If you want your marriage to survive your spouse’s illness, do the opposite of what you read below.

1. Focus only the illness, not your spouse. Make the illness the priority and the sole focus of your relationship.
2. Only communicate if it’s about the illness... or any other problem. Who has time to talk about anything pleasant? The illness is important, so the illness  (and only the illness) always needs to be discussed.
3. Only talk about very important matters when you’re extremely tired, hungry, or not feeling well. It’s even better if you’re both feeling lousy!
4. Never recognize or commend each other’s efforts. No one needs to hear that they’re doing a good job at anything. In fact, it's better if you can put your spouse down at every opportunity - especially in front of the kids.
5. Don’t bother to say I love you every day. You don’t need to actually say it. Come on, you’re still together, so isn’t it obvious?
6. When you feel an argument building up, go ahead and duke it out. Why should you hold back your anger? You put up with a lot and you should get to scream, shouldn’t you? You deserve to be heard – at any volume. It’s even more effective if you throw something or use profanity.
7. Never go on a date. Don’t worry about keeping the romance alive. Puhleeze. It’s enough that you still live under the same roof. Going on dates, leaving each other love notes, and constantly reminding each other of why you fell in love is a total waste of time.
8. Don’t worry about the healthy spouse staying healthy. Constant worry and daily stress might take a toll, but so what? If you’re not the sick one, you don’t require any attention. Try not to get enough sleep, don’t bother to exercise, and just ignore your constantly rising stress level.
9. Blame your spouse for being ill. Hey, they chose to be sick! The whole situation is all their fault. After all, couldn't they have chosen an illness that was easier to deal with?
10. Stay isolated. Don’t go anywhere as a couple. Make sure not to attend parties, dinners, or accept any invitations to anything even remotely fun. Make sure not to have people over. Stay insular and focused only on yourselves and your problems. After all, the illness is the only thing that matters... right?

Narcolepsy and Binge Eating

To look at him, you'd never know that my husband frequently binge eats.

Before his diagnosis, I just couldn't figure it out. If there was any kind of sweet or junk food in the house, it disappeared overnight. Cookies, doughnuts, chips, pie... the only evidence that there had even been a snack of some kind would be smears of icing or trails of crumbs. It drove me nuts! When questioned, my husband would admit - with embarrassment - that he had eaten all of the sweets, typically at 3 in the morning. 

Most recently, he devoured an apple pie overnight. The next week, he demolished the cake I had just baked that day. Finally, I thought... What's the deal?!

In reading a diet/health book a few years ago, I first learned the word ghrelin. In brief - ghrelin stimulates appetite. It's the little beast that growls and complains until we feed it. Unfortunately, when you don't get enough sleep, ghrelin is kicked into overdrive, making you feel even hungrier than normal. This is partly why doctors strongly advise getting more sleep when one is trying to lose weight.

When I did a little research and put two and two together... bingo! Well no wonder my husband pigs out in the wee hours of the morning - his sleep-deprived brain is telling him to! Crazy, right? It made total sense, though. It also made me wonder just how many narcoleptics overeat or constantly crave carbs and sugar... So now I know that something needs to be added to our action plan. Sure, I can keep junk food in the house for him, but what about his arteries? Skin? Cavities?

Maybe we can keep a treadmill and Listerine next to the Poptarts.

Worst Week - Car Accident and Tornado Alley

 My husband had a car accident last week.

First, and most importantly, he's fine. The guy in the other car is fine. Damage was minimal, and considering how bad it could have been, I'm so grateful that things turned out okay.

When my husband told me about the accident, I breathed an audible sigh of relief and told him this:

"Honey, it's okay. It was an accident. That's why they're called car accidents."
"Hey, it's about time we put our car insurance to good use."
"You handled things well and I'm so glad you're okay."

Here's what I was thinking:
"GREAT! Like we need this right now!"
"How did it happen? Wait, lemme guess... you fell asleep?"
"Goodbye low car insurance rate!"

Isn't that awful? It was like two of me this time. The regular wife and the wife of a narcoleptic. We growled at each other, each determined to have her say... fortunately, now that I've had some practice, I was able to control myself and handle things fairly well.

He did fall asleep at the wheel while waiting at a light. When the car in front of him stopped, he drifted along, jerked awake, slammed on the brakes and swerved in time to hit the rear corner of the car rather than slamming into the entire back end. The most frustrating thing about the situation is my husband's denial that narcolepsy was a factor.

It's a recurring issue for us.

My husband seems to feel that admitting that narcolepsy is occasionally at fault for his mistakes is an admission that narcolepsy is a bigger issue than he cares to admit. I'm in the confusing place of not knowing when to blame narcolepsy and when to blame the man. When that confusion threatens to undo me, I stop and focus on whatever that silver lining may be. In this case, it was the fact that things could have been worse.

They really could have been.

On April 27th, our city was one of several hit by devastating tornadoes. The series of tornadoes killed almost 400 people across several states and caused billions of dollars in damage. Our family was scared, left without electricity and a few fallen trees, but we had our home, belongings, and our LIVES. Some of our friends didn't fare as well and are now homeless. Some here are still without electricity. It was a week of trauma that really put things into perspective.

My husband may have an annoying, frustrating chronic illness, but my goodness, who cares! At least I have my husband. The day that we sat huddled and frightened in our home, I leaned on him physically, emotionally, and spiritually. He handled everything. That strong supporter was definitely not narcolepsy - it was all the man.

Organization - the Key to Managing a Household

Recently I heard an entertainer (singer) discussing his daily routine. Because his work was all-consuming, he said that he just didn't have time for certain things, including everyday chores. Laundry, bills, scheduling... the mundane but necessary parts of life were tedious to him. In fact, he went so far as to say that he didn't even think about those things. Trying to cope with the tasks overwhelmed him to the extent that if left to him, they'd more than likely never get done at all.

He sounded just like my husband. 

My husband is not lazy and he certainly isn't a chauvinist. In fact, he's a good cook, knows how to do laundry, wash dishes, and has never once complained about doing chores or running errands. That being said, I am the household manager. I am primarily responsible for keeping the house clean, keeping our pantry stocked, cooking meals, paying bills, organizing our schedules, and other things that keep a household running smoothly. Over time, I've learned just how much this helps my husband function well. When he can focus on getting through the day without worrying about looking for clean socks or trying to find keys, he has a lot less anxiety. 

So do I.

Although I love being organized, I'm no Martha Stewart. Instead, I have my good weeks and my not-so-great weeks. There are definitely a few tools that make my job a little easier and actually make being house manager fun, though. Most of the time. My suggestions:

1. A good calendar - more than one in our home. Use a large one. The more room to write, the better!
2. A color key - write everyone's appointments in an assigned color to make it easier to find a specific item.
3. A dry erase board - perfect for messages that may be important but temporary.
4. Sticky notes - little reminders, daily reminders, on the bathroom mirror, in the car, on the fridge...
5. Lots of designated spots for important things: keys, wallet, meds...
6. Paper and pen or another dry erase board on the porch - if someone comes by when you're not home, this can be useful too.
7. A medicine or pill organizer - again, more than one.
8. A weekly or monthly menu - we just use a basic one.
9. A grocery list based on your menu.
10. Lots and lots of notebooks - these are invaluable for keeping track of stuff. It's even more helpful if you label them.
11. Labels!
12. Plastic storage containers in about a million different sizes.
13. An organized laundry room - keep it simple, though.
14. A laundry schedule
15. An alarm clock... or two... or three!

Different things work for different families. I've learned not to force my family to use anything that frustrates us, no matter how popular or clever it is. Instead, we focus on what will make life easier... for us.

The singer I mentioned had a staff of professionals to help him organize his life. At times, it seemed almost like he took them for granted. Fortunately for me, my husband appreciates what I do. I know this because he tells me so all the time and he also shows me. Whether flowers or a card or even just a little note, I really feel like my husband values my help.

That makes it all worth it, really.

Narcolepsy and Marriage - When It All Falls Apart

Just a couple of years ago, I really didn't think we'd be celebrating our wedding anniversary this year.

At times I wasn't even that concerned about it. I wasn't angry or sad or spiteful... I just didn't care anymore.

In our family, wedding anniversaries are a big deal. My parents have been married for 33 years and every year, we try to celebrate the longevity of their love. After all, without it, we wouldn't be here. Well, my husband and I had been married for a few years when I thought -

I just can't do this anymore.


I felt myself giving up, but I wasn't even really sure what that meant. Did I have plans to leave him? Divorce? Take our daughter and disappear? No. Instead, I think I was planning a separation. An emotional separation that would mean we'd both live in the same house, eat at the same table, and even sometimes sleep in the same bed. 

But my heart wouldn't be in it.


Have you ever known anyone who was in a loveless marriage? I can't think of a sadder scenario. Two people who at some point in time wanted to be together more than anything. They were so in love they declared it to the world by getting married and uniting their lives. What a beautiful arrangement marriage is! Unless the love begins to die.


Fortunately, I didn't emotionally separate from my husband. Instead, I did something that I didn't want to do. I told him exactly how I felt. Without screaming or name-calling, accusing or berating, I just told him that I felt like our marriage was falling apart. Something was creating a crack in the marriage and that crack was becoming a vast chasm that was widening every day. So we talked and planned and saw a doctor, and soon, my husband was diagnosed with Narcolepsy. 


That diagnosis changed everything.


Now there was a reason for his behavior, his lethargy, his mood swings... but the hardest hurdle would now be changing my mentality. I had to start thinking about how to save my marriage and fight our common enemy. I recommitted to my husband and our relationship. It wasn't easy. I'm always reminding myself that my husband didn't ask to have this illness. He hates it more than I do. It's a battle, but it's worth it.

Our anniversary last week was the best one yet.

Narcolepsy and The Medication Nightmare

I think we've established that there's no cure for narcolepsy. 

There are however, several medications that are used to treat narcolepsy and it's friends. My husband has only tried a few so far, but the differences between them are astounding... and  a little scary.

Upon his initial diagnosis approximately 2 years ago, he started on Provigil. This was a drug that we'd never heard of, but then again, we didn't know a whole lot about narcolepsy either. I liked my husband on Provigil. He seemed like himself. That may sound silly, but it's the most accurate way I can put it. You see, narcolepsy often turns him into a different version of himself. He's muted and distant, like a faded photograph that you have to hold at an angle to see. It's like he's not all there - and in reality, he isn't. But with Provigil... wow, what a difference! Suddenly the photograph is in color, sharp and clear - it was great! For me, anyway. For my husband, it was just OK. The side effects included headaches and stomachaches which were quite bothersome, but went away over time. We thought we'd found a viable solution.

Then our health insurance got in the way. 

With insurance, the amount of Provigil my husband was prescribed amounted to about $400 per month. The cost was way beyond our modest budget. Just in case you didn't catch it before - that was with insurance. Suddenly, Provigil wasn't the answer anymore.

Next up, Aderrall.

Initially, it didn't seem  so bad. It kept him awake and alert and we didn't notice any side effects right away... It definitely wasn't like Provigil, but at least he was awake, right? That was when I learned that there's a lot more to treating narcolepsy than keeping a person awake. I've already gone into detail about how much I hate Aderrall, but I can never say it enough. At least it was cheap, I guess. With our insurance, it comes to about $12 a month.

Most recently, my husband was prescribed Nuvigil. He said that he felt the difference right away. Although I'll go into more detail in a different post, suffice it to say I loved him on it... but it didn't last long.The drug, I mean. The amount that he was prescribed was a free trial, and after that, we were on our own. Unfortunately, insurance doesn't cover it - at all. Fortunately, we're not the only ones who can't afford it. Drug manufacturers of Nuvigil have created a prescription assistance program that will help cover the costs of the medicine. We're in the process of applying for that.


It is a nightmare, finding the right medication to treat a chronic illness. With narcolepsy, one has to be so careful. A drug that may keep you awake might also trigger attacks of cataplexy. A drug that helps with cataplexy may make the night binges worse. It's such a delicate balance...

...but so worth it.