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?

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.