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.

We're Still Here

About three and a half years ago, I was desperate. I had been existing with my husband's recently diagnosed illness, but just barely. We certainly weren't surviving, much less thriving. Actually, we were barely making it.

So I hopped online to find... something. And I did. I found lots of information that was quite beneficial and informative. Lots of clinical information, various research analyses, and even personal experiences. But the personal experiences were what appealed to me the most. Specifically, I longed for stories of other people who had spouses with Narcolepsy and Cataplexy. I wanted real life input on coping day to day.

I couldn't seem to find anything, so I decided to vent instead. That was my motivation. I wanted a place to spill my I'm-sick-of-Narcolepsy guts. When I wrote my first post, it was such a relief to say what I was feeling about Narcolepsy! In fact, this blog was private initially. But I wondered if there was anyone - just one - person who would take comfort in knowing that they weren't alone. So I made it a public blog instead. I was amazed - and touched - by the response. People from all over the world told me that they could relate. Emails and blog comments poured in faster than I could reply to them. I was truly grateful for the outpouring of support.

And then I stopped writing.

A little more than a year ago, my husband quit his job. As if that weren't stressful enough, I became very ill and extremely fatigued (turned out it was anemia). This blog was pushed to the back burner until my health improved. By the time I felt better, though, I wondered if anyone was even reading this blog anymore. Again, I was amazed to see all of the messages and comments you've left me! As I was reading some of them aloud to my husband, I choked up. There are so many of us who just don't know what to do. We have to encourage one another, laugh with one another, give virtual hugs and good advice...

My husband and I are still here, plugging away at staying happily married despite the trials of a disease that just doesn't go away. Thank you for motivating me to keep blogging.

From Wikia.

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.

The Isolation of Narcolepsy

I feel a little down today.

This has been one of those weeks when I'm repeatedly reminded of just how much narcolepsy can isolate a person from the waking world.

Most people just don't get it. They watch your loved one fall asleep and judge. If your spouse isn't by your side, it's assumed that they must be asleep. They make jokes, or ignore you, or interrupt impatiently as your narcoleptic loved one searches for the right words. Sometimes, you get left out of dinners, parties, and anything else even remotely fun.

But it's not always someone else's fault.

Sometimes I decline invitations because I just don't want to deal with narcolepsy in a social setting. I don't want to nudge my husband awake, wake him when he begins to snore, or watch him worriedly as he fights to control a laugh. It can be exhausting, so at times I'd just rather stay home.

Then there are the let-downs: dates aborted because my husband is too tired to continue. Movies left unfinished... until further notice. Intimate moments become awkwardly silent. When one half of a partnership is always tired, the healthy spouse must quickly get used to the old adage, "let's play it by ear."

Much of the time, I'm okay. I have enjoyable hobbies, a few supportive friends, my volunteer work, and of course, my beloved child to fill my days with joy. But sometimes... narcolepsy leaves me lonely. Which leads me to days like today, when disappointment makes me a little weepy and I go to bed early.

Gray days are inevitable. But knowing that they can't last forever helps make it okay.

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 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.

Return of the Narcoleptic's Wife

Hi there.

Yes, my blog looks a little different. It isn't just your imagination - I have tweaked a few things. Here's what I've done in a nutshell:

• I added a few more interviews, both from narcoleptics and those who love them.
• I've updated a few of my regular pages, including my About Me page and the FAQs.
• I've also added a section for my reviews of narcolepsy and sleep related items, including books.
• I also updated a few "under construction" pages, including Narcolepsy and Sleeping Arrangements.

Most importantly, I decided to alter the tone of my blog quite a bit. After much (much, much!) thought, and repeatedly re-reading my blog, I've decided that I'm going to focus on the positive.

Don't get me wrong - I don't plan on completely sanitizing my blog by only mentioning the rainbows. Some days are cloudy and that's just life. But I'm going to work harder to focus on the positives and I'm sure my words here will reflect that. I plan on sharing the gray days too, though. When my hubby was first diagnosed with this crazy disease, I really could've used a lot more input from those who understood how it was to be partnered with someone with narcolepsy. But my focus will be on positive ways to deal with this intrusive illness. If things become overwhelmingly negative, I'll still write out my feelings - but in my personal journal rather than online.

I welcome input regarding my blog updates, so tell me what you think! Stay tuned - we have a lot of catching up to do.

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 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.

A Narcoleptic's Guilt

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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.

Narcolepsy and Depression - A Natural Combination

Narcolepsy is depressing.

Picture the life: You are intelligent, love to be active, involved, affectionate, and funny. But your illness makes you dull and slow. Mentally lethargic, you'd rather just listen to the conversation rather than participate. You can sometimes make it to the party, but the first thing you need to do is find a place to nap.

Such is the life of my husband, the narcoleptic.

Understandably, he gets down about his condition. A born list-maker, he always has a million things he wants to get done each day. Realistically, he often has to settle with just getting through the day. This frustrates him and sometimes saddens him. Many times he gets very sad. So sad that he feels hopeless. So hopeless that he feels like giving up. He swings from ranting to crying and back again, in an exhausting cycle of emotions that drains us both.

That's depression.

My husband didn't think he was depressed. He thinks that he's just "messed up" sometimes. While I certainly respect his opinion (it is HIS body, after all), I vehemently disagree. See, about 10 years ago, I was clinically depressed. Major depression was a large part of my life for many years. Too many. I spent years seeing psychiatrists and therapists, participated in group therapy, tried several different anti-depressants, and was even hospitalized a few times.

Nothing helped.

Eventually, I decided that if I was going to get well, I'd have to take matters into my own hands. When I did, I slowly got better and now all these years later, I know I made the right choice. But that's another post. My point is that, if nothing else, I recognize the symptoms of depression. I recognize them like I recognize the facial features in a photograph of someone I once hated. Someone who stalked me relentlessly, teased and tortured me, and fought tooth-and-nail when I was finally able to push them away. Yes, I know depression.

So what to do? If you suspect that someone you love suffers from depression, can you force them to get help?

No, but you can show them what healthy looks like.

In describing my experience with depression to my husband, I saw recognition in his eyes. Now I just have to introduce him to something else.

Hope.

How to Have a Conversation With a Narcoleptic

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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.

Narcoleptic Does Not Equal Lazy

A narcoleptic may be tired, but that doesn't mean that they can't get things done. The other day my husband did chores, completed a repair on the car, ran errands, took our daughter on an outing, and was able to stay awake at the dinner table.

Image courtesy of Ambro/FreeDigitalPhotos.net

When we moved, my husband pushed himself all day in the hot sun until our large moving truck was empty and all of our furniture was (roughly) in place. Before the group of people we had helping us left, he passed out. Literally.
He collapsed, unable to get up, and slept for hours right where he'd given out. It wasn't until that evening that he was able to struggle to take a shower and collapse again - this time into bed.

So although my husband can at times force himself to keep going when all he wants to do is sleep, it isn't good for him when he does. It only intensifies his symptoms and sometimes makes his cataplexy more severe.

Although the temptation may be to push himself until he drops, it just isn't a lasting solution. The recovery is just too taxing.