That Fine Narcoleptic Line

Narcolepsy can be tricky sometimes.

Everyone makes mistakes, has idiosyncrasies, or experiences periods of forgetfulness. Narcolepsy ramps that up to a whole new level. See, when the effects of narcolepsy are more dramatic (cataplexy, sleep paralysis, etc.), people seem more empathetic. But when the effects of narcolepsy are more mundane, people seem to doubt that narcolepsy is even the culprit behind the symptom. Consider the following:

My husband is often late for work. This is despite my best efforts in helping him to wake up well before he needs to leave, preparing his work clothes and lunch, constant notes and reminders (like the one next to the front door which reads, "Wallet? Keys? Meds?", and warnings from superiors at work regarding his tardiness.

My husband is extremely forgetful. (Is there a word stronger than "forgetful?") If he has a grocery list with ten items in hand, he'll forget one. He forgot to stop and gas up the car so often that we finally decided to fill the tank on the same day every week, but he still forgets occasionally. Often, he's only made aware when his car runs out of gas and stops on the side of the road.

It is impossible for my husband to repeat a conversation that he just had. If someone calls us, it's best to let the answering machine pick up if he's is the only one available to answer the call. He simply cannot relay a phone message. Immediately after hanging up, he'll hold his head in frustration, struggling to remember what was just said.

 

The list could go on and on. They may seem like your everyday idiosyncrasies, but for my husband, they are just more of the annoyances that come with having narcolepsy. For me, it's a reminder that there is a fine line between (stereo)typical husband behavior and a narcoleptic's unavoidable errors. Sometimes the line is so fine... that I forget it's even there. I must constantly remind myself that my husband hates making the same little mistakes repeatedly... and I ain't perfect either.

Ten Things I Wish I Had Known Before I Married a Narcoleptic

This is my 50th post!

Pretty neat, huh? I wasn't exactly sure how long I'd write here, really. I'm pretty excited to publish #50. In honor of that, I thought it would be cool to post something I've been mulling over for awhile. I’m often asked about this: what do I wish I had known before I married a man with narcolepsy? A few things come to mind...

Ten Things I Wish I Had Known Before I Married a Narcoleptic 

1. A “good” doctor is key. Narcolepsy isn’t like any other illness. It isn’t just about sleep. It’s also about mood, self-esteem, daily functioning – quality of life. I wish that I had known that any old sleep specialist won’t do. The doctor needs to care. 
2. Finding the right plan takes time. Several different medications are used to treat the symptoms of narcolepsy and cataplexy. Not all of these medications affect narcoleptics the same way. Not all narcoleptics even have the same symptoms. Not all treatments (sleep schedules, dietary restrictions, exercise programs, psychotherapy) work for every sufferer. You’ll have to put in time and research to find the right treatment for your situation. I wish that I had known that trial and error is just part of the process.
3. Be careful not to let narcolepsy isolate you. Yes, it can be embarrassing to be with someone who always falls asleep in public. A narcoleptic’s occasional sluggish thoughts and speech can be awkward in a social setting. A cataplectic attack in front of others might be humiliating. Although it might be tempting to avoid these experiences altogether by separating yourself from the rest of the world, don’t. Narcolepsy can be isolating enough. Positive association with friends and family is key to maintaining normality. I wish that I had known just how important staying connected is to my family’s well-being.
4. Not everyone will be supportive. There will be those who just won’t understand your loved one’s illness. There are those who won’t even believe it’s that big of a deal. There are those who will make impolite jokes, insensitive comments, and generally get on your nerves when it comes to their lack of sensitivity about narcolepsy. Although you may want to try explaining the gravity of your situation until you’re blue in the face, don’t waste your breath on those who don’t care. I wish that I had known that I’m not obligated to defend our choices about narcolepsy to anyone, especially those who are unsympathetic.
5. There are worse things. It’s not cancer or AIDS or some other fatal malady. Yes, my husband struggles with his illness and it certainly affects our entire family. I don’t take it lightly and I wish that more people understood what a devastating disease it is. That said, it could be so much worse. I wish that I had known that "it could be worse" is a cliche that actually helps to keep things in perspective.
6. People without narcolepsy need care too. Maybe even more so. Sometimes we get so focused on my husband’s medications, sleeping habits, appointments, and general health that I lose sight of my own needs. In order to better help my husband and take care of myself, I need to stick to the obvious: get plenty of rest, maintain a healthy diet, exercise regularly, and find time to relax. I wish that I had known that sometimes it’s better for my whole family if I put my health first.
7. Hate the disease, not the person who has it. I've mentioned it before, but it's so true: I often view narcolepsy and my husband as two different people. This view goes a long way toward helping me to remember what's behind my husband's lethargy, disinterest, or forgetfulness. I wish that I had known that making the illness our mutual enemy draws my husband and I closer. 
8. Bad days are inevitable. We live in an imperfect world, so nothing will ever be perfect. With or without narcolepsy, no marriage or family is without problems. Narcolepsy will probably lead to some crummy days, but it doesn't have to mean anything more drastic than that. I wish that I had known that having a bad day isn't a sign of failure. 
9. Humor helps. Really, it does. Some of my husband's crazy sleep-speak is pretty hilarious. Every now and then, his cataplexy can even be funny. I wish that I had known that being able to laugh at narcolepsy is a healthy way of coping with a sometimes overwhelming disease. 
10. All you need is love. The Bible said it first and the Beatles sang about it. Just imagine if your love for the narcoleptic in your life was stronger than your impatience, your frustration, and your anger over this exasperating disease. I wish that I had known that with real effort, love really can surpass all of the negativity narcolepsy can generate.

In case you didn’t notice, I didn’t say that I wish that I’d known my husband had narcolepsy. I left that out intentionally. It doesn’t matter, really. Even if I'd known that he was ill, I would've fallen in love with him anyway. But a list like this would've helped me to know what I was getting into.

Maybe My Husband Isn't the One With Narcolepsy

I received the most touching email recently. It was from a woman who, like me, has a husband with narcolepsy. While her email was full of love and admiration for her hubby, it was also laced with stress, fatigue, and angst over her situation. She seemed torn between being in love with a great guy and the difficult reality of loving someone who can't always love you back properly.

I think I've found my twin sister.

In her email, this big-hearted woman said, "I suffer from Narcolepsy, he is surviving it." That statement reached deeply into my subconscious and yanked out the same realization for me. It truly is a deep thought. Let me explain why.

Since childhood, my husband has been... different. People thought he was weird, difficult, lazy... nothing positive came of living most of his life with an undiagnosed sleep disorder. Now that he's an adult, a bona fide Narcoleptic, and taking medication appropriate to his condition, he is no longer a victim - he is a survivor. He survived life's hardships undiagnosed and now struggles valiantly to survive everyday. He fights prejudice, ignorance, and apathy of his illness. He has a family who loves and supports him, a job that (sometimes) tries to understand, and health insurance that covers him for now. He's truly surviving.

It's different for me. Because my husband lived for many years knowing that something was off, it was a relief for him to finally hear that he was not "weird," but ill. Despite knowing my husband for much of my life, I had no idea that he was ill until after we were married. His diagnosis presented a new world for me: living with a chronically ill spouse, researching an illness that I barely understood, and a less certain future for my marriage.

So when I read the email from my long lost twin saying that she was the one who actually suffered from narcolepsy while her husband was surviving it, I totally got it. Reflecting on her words, I realized that my husband and I handle his illness differently. Simply put, he deals with it, I stress out over it. I want that to change, though. In the same email, my new friend also said that there's "no magic pill" and she's right - there isn't. But changing my attitude has got to be a great first step on the road toward a solution.

Thank you Karen for your lovely e-mail.

Narcolepsy and the Roly-Poly

Narcolepsy turns my husband into a roly-poly.

You know what a roly-poly is, right? We have tons of them in our garden. They meander along, perfectly content until you touch them. Then they immediately curl up, hiding themselves away until the perceived danger has passed and they can get back to their roly-poly business.

For my husband, cataplexy - narcolepsy's evil twin - is the worst during times of emotional stress. If you aren't sure what that means, think of the most stressful moments of your day - good stress or bad - and imagine collapsing into a skin puddle every time you react. Whether it's laughter, anger, or tears, you lose muscle tone and slide gently to the floor... hopefully. Most of the time, my husband ends up falling in an ungainly heap that looks fairly painful. It's worse than fainting because the sufferer is still awake! My husband can hear everything when he suffers a cataplectic attack - he just can't do anything about it. So maybe it would be more accurate to say that cataplexy turns my husband into a roly-poly.

Understandably, he is usually very reluctant to get emotional. While any emotion can make my husband get physically weak, the higher the emotional strain, the weaker he gets. But he isn't completely impassive. He’s just a lot more reserved than I think he would be without the constant fear of (literally) falling on his face. This emotional reluctance means that my husband avoids confrontations of any kind like the plague. Confrontations of any kind, including possibly difficult discussions with his wife, me. Now my definition of difficult and his version of difficult are vastly different. I don't think it's always that hard to review our budget or talk about our goals. My husband however, finds those conversations awfully tough. Sometimes he finds them impossible. That's when he becomes a roly-poly and hides until the danger - our difficult conversation - has passed.

Roly-polys hide by curling into a ball. My husband hides by sleeping.

I used to resent my husband's seeming indifference and avoidance of the more tedious aspects of marriage and general grown-up stuff. After his diagnosis, though, I am working to understand that he wants to have those harder conversations... but a lot of times he just can't do it. And the more impatient I act toward him at those times, the guiltier he feels about his inability to participate. The guiltier he feels, the more tired he becomes...

It's amazing to see the change in him, actually. He starts out like a normal person, listening, aware, wide-eyed. But as our conversation continues, his eyes droop dramatically, his face begins to go slack, and within five minutes, he is quite obviously very, very sleepy. He may try to hold out for a little longer, insisting that we continue, but not only is his obvious exhaustion a huge distraction, the conversation becomes more and more one sided. His responses take forever, and then sometimes they don't even make sense. His mood changes (would you be happy talking about your bills while you were falling asleep?) as does mine (frustration, mostly), and just a few minutes after the conversation begins, it's over. When he wakes, my husband is always both apologetic and embarrassed, but I'm quick to apologize too. My impatience isn't directed toward him. It's directed at this exasperating disease.

As I mentioned in a previous post, until we find a better solution, I’ll do my best to keep a firm grasp of the reigns... without making my husband feel guilty for needing me to.

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.

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.

A Narcoleptic's Guilt

Image courtesy of bigjom/FreeDigitalPhotos.net

My husband apologizes a lot.

I didn't notice this until a couple of years after we'd been married. I figured it was a quirk. We'd often have those conversations that are parodied on TV:

"I'm sorry."
"Why are you sorry? Stop apologizing."
"I'm sorry, I'll stop."
"You just did it again!"
"Sorry..."

...and so it goes.

Over time, I realized something. He apologizes sincerely, because he feels guilty. He feels guilty because his illness is a weight that prevents him from being the husband he envisions in his own head.

That's pretty deep stuff right there.

Imagine that - in your mind, you should be THIS. Whatever THIS is for you as a wife, husband, friend, sibling, employee, you have a mental picture of what you should be.

But you can never be that.

It isn't your fault, so why feel guilty? This really made me pause when I realized how my husband was feeling. Every day, he felt like he wasn't doing enough. Every day, he took stock of his failures. Lists unchecked, chores left unfinished, projects abandoned. Day by day, it stacked up - this pile of failures. It's his pile, and only he knows how tall it stands, but for him, it's always there. That makes me so sad for him because that is certainly not what I see. I'm so proud of him for getting up each day and persevering despite his constant fatigue. I don't know how he does it sometimes.

As if the weight of narcolepsy wasn't enough to bear, he has the added burden of guilt. Hopefully my bearing some of the load will allow him to breathe.

The Narcolepsy, Not the Man

So I had a conversation with my mother today that left me feeling pretty guilty. Although we only spoke for a few minutes, by the time we hung up, I felt as if I'd spent hours railing against my husband. In retrospect, maybe I did. I often think that I confuse the two: my husband and Narcolepsy. Over the years, I've come to think of myself as being married to two different people: my husband - whom I chose to marry, and Narcolepsy - who tricked me into marriage.

It's the Narcolepsy that I think is lazy and unmotivated, careless and forgetful, annoying and dull. My husband is none of those things. Instead, he's funny and interesting, smart and resourceful, motivated and hard-working. Those are some of the reasons why I fell in love with him.

Narcolepsy is such a betrayal of who you really are. It literally transforms my husband into a different person - a person that I sometimes don't recognize, and sometimes barely tolerate.

But I don't think I conveyed any of that to my mother. That's what left me feeling guilty. I am just barely beginning to understand this illness, so I'm pretty sure my mother doesn't fully comprehend it. I think that I will make a vow: I will only vent about my husband's condition to those I'm confident will understand the extenuating circumstances.