Monday, October 24

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. 


Thursday, October 20

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.

Tuesday, October 18

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?

Sunday, October 16

Narcolepsy and and the Jealous Sister

My sister is getting married and I’m jealous.

She’s my only sister, and much younger than I am, and I’ve always adored her. I was old enough to watch her be born, helped bathe and weigh her at the hospital (they’d never let a kid do that nowadays), and I’d do anything for her. I’m excited about and totally emotional over her engagement.

I’m also very jealous.

I didn’t realize it right away. It started as this nagging feeling that was always in the back of my mind when we talked about my sister’s wedding. It started out small but grew quickly until it was actually bothering me all the time. I decided to sift through my feelings to see what my deal was.

My wedding was intimate, simple, and involved just the two of us. Our families weren’t there, and our day was completely nontraditional. 

It was also the most fun day of my life. 

To this day, thinking back to my wedding day makes me smile. I don’t I’ve ever laughed as much as I did on that day. It was so wonderful, we were so happy, and the setting we were in completely reflected the giddy, fun love we shared. It was perfect. 

My sister’s wedding will be big, elaborate, and elegant. All of our family and friends will be there, and the lovely, traditional ceremony will suit her perfectly. I’m helping with the planning and I just know it will be awesome.

I’m not jealous about that.

My honeymoon was simple – we took a (really) long weekend and spent half of it at a B&B in the city, and then holed up in our newlywed apartment for the rest of it. It was romantic and special.

My sister’s honeymoon is a destination vacation at a beach. They’ll have time away, play in the ocean, and come home to their new lives refreshed and rejuvenated. 

I’m not jealous over that either.

It finally hit me one day during a wedding planning session. I tried to include my husband in a few things, but was repeatedly turned down. Finally I realized that they didn’t want him to help with the wedding. Not because they don’t love him or because they dislike him. It was because of his narcolepsy. They figured he’d probably fall asleep. That’s what was bothering me. I was jealous of my sister’s future husband. He’s kind and totally devoted to my sister, and I actually like him... and he’s healthy.

I'm jealous because my sister’s husband won’t have narcolepsy.

I’m usually not jealous of other women’s husbands. Every now and then I’ll hear about a couple going on a road trip (I love them), or spending an entire day at the movies (how fun!), or just cuddling on the couch, and I’ll think wistfully of how nice that would be. My husband can’t do those things without falling asleep. But jealousy? Not really. Not until now.

Don’t get me wrong – I wouldn’t wish narcolepsy on anyone! I’m so happy that my sister is marrying someone who will be as healthy as she is. But I’m jealous of the fact that her husband will be “normal” - not always tired or sleepy. When they have Sunday dinner at my parents’ house, she won’t join everyone at the table while her husband catches a nap somewhere. She won’t be asked, “Where’s your hubby? Sleeping?” repeatedly throughout the day. The unspoken phrase, “if he isn't too tired" won’t be tacked onto the end of every request made of her husband.

It's another reality check for me - another indication that having a chronically ill spouse makes me different from other people. Who would imagine that one could be jealous of someone having a healthy partner? It's almost funny. Almost.

The good news is that admitting it to myself allows me to move on and finish helping my sis with her plans. Admitting it reminds me not to compare my relationship to anyone else's. Faults and all, it's uniquely mine and I'm grateful for what I have.

Most of the time.

Friday, October 14

End of the Medication Nightmare ... Maybe

I'm not too thrilled with my last blog post.

My mouse hovered over the delete button, but I'm going to leave it alone. After all, this blog is about my reality of living with a narcoleptic spouse, and that day my reality was that I felt bitter. And tired. And discouraged. But today my reality is different. I feel better. I actually feel hopeful. In a previous post, I discussed how Nuvigil worked for my husband, but we couldn't afford it (even with so-called "good" insurance). Well circumstances have changed and Nuvigil is now within our grasp! I'm very happy about it; my husband will start taking it this week.

I feel hopeful because the husband who is irritable, quick to anger, and sometimes says mean things is not really my husband. It's my Medicated Husband. Different guy - same winning smile. Unfortunately, I don't see that smile a lot when he's on his current medication. I've talked a lot about how much I hate Adderall, so believe me when I say that I am thrilled to kiss it goodbye.

Believe it or not, I'm not knocking Adderall.

I'm sure it's worked great for some narcoleptics. I'm sure it has really changed some lives for the better and helped immensely. I'm sure it's the answer to many prayers. But not for us. The side effects just weren't worth it. I preferred to have my sleepy husband who fell asleep every half hour to the amped-up guy who couldn't sit still and was incredibly intense over mundane things. That guy was the inspiration behind my last post.

My husband deserves to feel better. He really does. As much as I hate the way he is on Adderall, he hates the way he feels. Because he's actually tried Nuvigil before, we know that it works for him. I posted about it not too long ago because our insurance didn't cover Nuvigil. We applied for the medication assistance program, but guess what? If you have insurance, you don't qualify. What?! That's our health care system for ya.

We're still interested in trying some other things, including something to help him sleep, but I'll take things one thing at a time for now.


I'm just so grateful that my reality is different today.

Wednesday, October 12

Doubts and Self Destruction

Sometimes I wonder what I'm doing here.

I mean, in this marriage.

Lately, I've been having a real hard time differentiating between the narcolepsy - excuse me - The Narcolepsy and my husband. Usually I can easily tell the difference between the two, but sometimes it feels like they're one and the same.

It's sort of embarrassing to read my previous positive post about sticking it out when things are tough. When I wrote "It's so selfish to be willing to bolt when the bad days outweigh the good," I wasn't thinking of a day like the one we had recently. After that day, I thought, "That's it. I'm done." I'm not exactly sure what I meant by that, but I just wanted to stop the madness.

Once in a while my husband just doesn't seem to care at all about our marriage or himself. There are days when I think he's self-destructing.

What am I supposed to do about that? I can struggle to find another medication for him, one that doesn't cause drastic mood swings, one that doesn't have such detrimental side effects, but I can't force him to take it. I can suggest he try some of the things I've researched: a routine, an exercise regimen, removing certain things from his diet... but if he doesn't want to try any of those things, I can't make him. All I can do is try. It's just really hard to care when the person you're fighting to help doesn't seem to.

But I never said that it would be easy, I guess.

Monday, October 10

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.