When Narcolepsy Is Not the Only Issue

When you are married to someone who is chronically ill, the illness is rarely the only issue.

The illness and all required to cope with it are a major part, of course.
There are the obvious logistics: the battle to cope with tweaking medications, side effects from tweaking those medications, doctor's appointments, hospital visits, therapies, and the scheduling and travel involved with the whole process.

Then there are the less obvious social aspects: dealing with everyday life while battling constant fatigue, trying to focus at work or school, finding time - and energy - to maintain friendships, marriage, and a quality relationship with your children, all while dealing with the stigma and isolation living with a relatively unknown, incurable illness creates.

Don't forget the extras: there may be financial difficulties, emotional trauma, struggles with family, friends or even medical professionals who just don't understand. The list can be endless.

It's enough to drive even the most patient person to distraction, the strongest person to tears of frustration.

But what if that wasn't all?

What if there was something else lurking at the edges of your life, waiting to upset the precarious routine your family has finally settled into?

That's what happened to us.

Among other things, my husband had to face down yet another illness, I became very ill, we moved, our old-but-faithful car gave up, and worst of all, worst of all... my dear mother-in-law died suddenly, from what we believe were complications related to her (newly diagnosed) sleep apnea. And even more horrible - my husband found her body.

Suffice it to say, 2014 was the worst - and most enlightening - year of my life. Our lives sort of... imploded that year. We stumbled from one struggle to the next with little time to breathe, more less recover. For about eight months, things were... just a mess. But we survived. We endured. And now that the dust has settled, here we are. Whole, intact, and coping.

We are okay.

My mother-in-law is missed everyday, and all of the other issues have resolved themselves wonderfully, I'm grateful to say. But that's life, isn't it? How many cliches have you found yourself living through? "When it rains, it pours." "Well, that's Murphy's Law." "We're being kicked while we're down." It happens.

For those of you who reached out during my absence, thank you dearly. I hope that all of you are well and coping as best you can with the endless struggle of narcolepsy and cataplexy.

It's wonderful to be back. I have so much to tell you.

When Your Marriage Disappoints You

It's bound to happen.
Not because you're a bad spouse or a terrible person.
Not even because you've fallen out of love.
After all, if you didn't love them, the bad days wouldn't hurt so much.
It will happen because no one wants their spouse to be sick. Yet, that's what our spouses are.
They are ill - chronically so - and that makes being married to them a little trickier sometimes. It requires a bit more patience, kindness, humor, and of course, love.
But sometimes, just sometimes, it's really disappointing to be married to someone who is chronically ill.
Take a breath because, it's okay to feel that way.
Say it aloud right now. Say it with me: "Sometimes I feel disappointed in my marriage, and that's okay."
It really is.
Maybe you didn't handle a situation in a positive way. Maybe you slipped up and blamed your spouse, rather than narcolepsy. Maybe you found yourself envying someone else's physically healthy marriage. Maybe you resented taking care of the kids, paying the bills, washing the dishes, or spending another night alone. Maybe you're just tired of having a spouse who's always tired. Maybe it's everything. Maybe it's nothing you can define.
The point is, it happens. Cry, pray, cry and pray, read this blog post and weep, whatever... and then let it go. The danger is not in feeling disappointed. Everyone feels disappointed in their relationship at some point, ill spouse or not. The danger looms when you dwell on the disappointment. Don't let yourself do that - ever. Fight the urge to focus on the negative! No matter what sort of day you're having, your marriage isn't all bad. Having a spouse with narcolepsy is not the worst thing that can happen to your family. Not by a long shot. So get it out, let it go, and move on.
Get it out.
Let it go.
Move on.
Journal, go for a walk, clean the bathtub, or put on some Ellie Goulding and dance your pain away. Whatever you do, let that disappointment go and get back to focusing on the positive.
If you want to save your marriage, that is.

How to Keep the Passion Alive In a Relationship With a Narcoleptic

Did you notice that the title of this post begins with How not Should I? This post is for those who want to make sure their marriage stays passionate. If you just ain't feelin' the passion anymore, or just don't care anymore, no worries. I discuss how Narcolepsy drains passion in another post. For now, let's focus on the positive and talk about ways to keep the passion alive!

Take the Lead. The truth of the matter is, quite simply, you're going to have to do most of the work. Let's be realistic. It's hard to feel or act romantic when you're tired. And our Narcoleptic spouses are often tired - extremely tired. That usually means that any initiation of romance is going to be left up to us. Of course, it can get a little old, always being the one to initiate the romance. But remember your focus is on keeping the passion alive - no matter who has to work harder to do so.

Keep It Simple. I used to exhaust myself with elaborate date nights or unique romantic ideas. While the drawn out plans are great, things don't always have to be complicated to be effective. Write a love note rather than a letter, send a text rather than make a long phone call, cuddle before a movie at home rather than hitting the crowded theatre. My hubby and I spend most of our date nights at home, and that's okay. I'm just happy to spend quality time together while he's awake.

Have a Backup Plan. Yes, it will probably happen if it hasn't already. Your Narcoleptic love may fall asleep during a date or other romantic time. It's happened to us repeatedly and although I don't get upset, rarely am I able to just laugh it off. The good news is, when you know that it's a possibility, you can be prepared. If your significant other tends to sleep for a long time, prepare to try again on a different night. If they'll wake after a brief nap, resume where you left off.

Spontaneity Is Okay. You don't always have to plan romance. Can you take advantage of a quiet moment? An unexpectedness tenderness or sharing a sudden laugh can be a great starting point for a quick touch or kiss. Never forget how much power an intense look or warm hug can have, too. Are the kids out of the house suddenly? Did you score a great freebie that you didn't plan on? Take advantage of the unexpected whenever you can. Chores and other duties will always be there, so sometimes, they can wait.

Be Flexible. Can you hang out with your spouse in the morning rather than at night? Reverse that if they're more alert in the evenings. Can you do something outdoors if they have a hard time staying alert during a film? Can you watch a film if they have a hard time being active? Try spending small chunks of time together rather than hours on end. Sometimes my hubby and I will spend an hour playing a board game and listening to music. Nothing exciting, but it works for us.

Do Something Everyday. Look into their eyes when you say, "I love you." Hold hands when you walk together. Kiss them good morning AND good night. Laugh at their jokes and compliment their efforts. When they reach out for you, reach back. Fight for the romance in your marriage every single day. It's simple logic: if you act more romantic, you'll feel more romantic. And then that first suggestion won't be so hard after awhile.

Be Patient With Your Spouse... and Yourself. Narcolepsy is incredibly frustrating. And unpredictable. And inconvenient. And did I mention frustrating? Your spouse chose you. Don't you think  that they want to spend quality time with you? Remind yourself of that - often. You are worthy of love, and romance, and passion, and so is your spouse. Every marriage should be based on mutual love and attraction, so work hard to make sure that Narcolepsy doesn't rob you of yours.

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.

Narcolepsy and Sleeping Arrangements

A reader recently asked me about the sleeping arrangements I'd recommend for a couple with a narcoleptic spouse. My answer is simple: do what works. I really mean that. Whether it's sleeping separately, sleeping together, a traditional bed, two beds in one room, or totally separate rooms - do whatever allows you both to get your much needed rest.

I didn't always feel this way.

When my husband and I first married, I expected what many new couples enjoy: snuggling in bed with the person you're in love with and gently drifting off to sleep together. Within the first few weeks of our marriage, I was rudely awakened from that expectation - literally. I quickly realized that my husband snored - loudly. He would stop breathing at times... and then gasp wildly for air, sometimes choking in a fight to take a breath. He talked. He laughed. He flailed his arms sometimes. He occasionally yelled or even screamed. It was nearly impossible for me to get any sleep with him by my side. And snuggling? Ha! Although we may have started out spooning, as my husband drifted off to sleep, he would jerk and tremble when touched. Needless to say, we knew that we would have to make some different sleeping arrangements.

Not all people with narcolepsy have such extreme difficulty getting a sound night's sleep. Although trouble sleeping at night is a very common symptom of the disease, it isn't an absolute. See, my husband also suffers from sleep apnea (hence the snoring and gasping problems), mild restless leg syndrome (touching him as he sleep disturbs him greatly), and hypnagogic hallucinations (which causes him to talk, laugh, and move in response to images that are simply dreams). Before his diagnosis, we tried everything. I tried over-the-counter sleep aids to help me fall asleep sooner - fail. I tried ear plugs of a variety of materials (and prices) - fail. We tried products that claimed to stop snoring - fail. We even tried combining solutions - major fail. Finally we were forced to admit that the only solution that seemed to work for us was to sleep in separate rooms. Initially, I felt saddened at the thought that we wouldn't fall asleep in each others arms. After my first good night's sleep in years, however, my feelings changed. I could only think, "Ah, sweet relief!"

That's where it stands today. 90% of the time, we sleep in separate rooms. This does not mean that we live in separate rooms however. We just sleep separately. It means more rest for each of us, which ultimately, is better for our marriage. We're not the only ones, either. In an article about her own relationship, author Sophie Keller examined why sleeping in separate rooms works for many couples.


My advice remains the same. Ignore the critics, the TV couples, or what your friends are doing. Do what works to allow you both to get some sleep. 

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 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.

How to Have a Conversation With a Narcoleptic

Image courtesy of Boykung/FreeDigitalPhotos.net

It sounds like the opening to a really good joke, doesn't it?

If you don't already know this, a person with narcolepsy is often tired and sleepy. But that's not all. They often suffer from problems with concentration, short-term memory loss, irritability, and mental confusion. Imagine having all of that going on and try to hold a normal conversation.

It ain't easy.

With my husband, I've learned to repeat things. A lot. It's not that he isn't listening or didn't hear me. It's just that it didn't quite register. Imagine his mind is a sleepy, distracted person trying desperately to play ping-pong. If I fire the ball at him, he definitely won't hit it, but if I lob it gently over and over, eventually he'll reach out at just the right moment and voila! He gets it.

Then there are the other times.

Other conversations are just the opposite. By nature, I'm a fast talker. No, I'm not a swindler - I just speak really quickly. Over the years I've learned to slow down and let people get in a word every now and then, but I never have a problem spitting something out. Every now and then though, my narcoleptic husband out-talks me. Excited and eager to share his thoughts, he impatiently trips over his own words in a rush to get them all out there. It's like verbal ping-pong, it's so fun talking to him in that mode. Back and forth we bounce ideas off of one another, laugh at impromptu jokes, and frequently apologize saying, "I'm sorry, go ahead," when one of us gets too excited and interrupts the other.

It's weird, but that's narcolepsy.

Of course I prefer the times when my husband is more articulate and engaged in the conversation. I fight impatience when he has to speak slowly, when there are lengthy pauses while he fights to remember what he was saying, dead silences as he contemplates an answer to my easy question. At those times, I know he's just a prisoner. Narcolepsy is holding his brain hostage once again.

I still haven't figured out the cost of the ransom.

So for those who genuinely want to know how to talk to their friend, co-worker, or loved one with narcolepsy, the answer is simple: be patient. If they stumble, forget, or ask you to repeat, just be patient and wait for them to hit the ball. They may speak slowly this time 'round, but the next time, you may just need to get your paddle ready.

*For a very insightful view of how a person with narcolepsy sometimes feels trying to converse with people, read this blog post from Confessions of a Narcoleptic.

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.