Friday, August 27

A Narcoleptic's Guilt

Image courtesy of bigjom/

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!"

...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.

Wednesday, August 25

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.


Saturday, August 21

How to Have a Conversation With a Narcoleptic

Image courtesy of Boykung/

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.

Sunday, August 15

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/
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.

Friday, August 13

Narcolepsy Is Absolutely Not Contagious... Right?

I've been very tired lately.

It's funny how a lack of sleep is the last thing we consider when feeling unwell. I considered everything but sleeplessness as a reason for my malaise. Then one day - I fell asleep.

I never fall asleep, even when I should. But this day, I fell asleep in the middle of the day, quite unexpectedly.

Apparently, I need more sleep.

It's makes perfect sense. Sleeping with someone who can never get a good night's sleep is bound to affect their partner. Not to mention we have a toddler who sometimes decides to wake up at 3am. It's hard to predict when I'll go to bed though. For instance, last night my husband called home around 11:00pm to tell me that he'd have to nap before he drove home. Worried, I waited up for him. I didn't get to bed until 2am. Our daughter gets up at 6.

If I'm going to be an advocate for my husband, I'm going to have to take better care of myself. Isn't that the first rule of care-giving? The caregiver must take care of self first. That's going to be hard for someone who considers her family's needs before her own and feels guilty if she doesn't.
For starters, I've begun painting again. I started a series of ACEO (Art Cards, Editions, and Originals - art the size of baseball cards) with different themes, including narcolepsy.

I feel better already.

Wednesday, August 11

I Hate Adderall... and It Hates Me

So last night I finally told my husband how much I hate his medication.


If you could hear the loathing in my voice when I spit out that word...

My husband has narcolepsy. That means he is often sleepy, tired, or mentally drained. The solution to that would simply be to wake him up, right?


The solution actually does not currently exist as narcolepsy is incurable (for now). But there are several treatment options available, including a variety of medications that can help alleviate or lessen symptoms. Unfortunately, I don't believe Adderall to be one of those for him. Although it does keep my husband awake sometimes, the side effects are so extreme that the moments when he is lucid aren't even worth it.

Here are some of the benefits of Adderall:
  • Improved concentration
  • Mental alertness
  • Appetite suppression (some may consider that a benefit)
That's the effect I can see it has on my husband. Here are the side effects:
  • Irritability
  • Inability to sleep
  • Teeth grinding
  • Loss of appetite
  • Agitation
  • Mood swings
  • Depressed moods
  • General anxiety
  • Increased desire for nicotine (in ex-smokers)
Image courtesy of Stuart Miles/
See the difference? I'd rather have my un-medicated, sleepy husband who is at least normal to a certain extent than the alert but antsy, unpredictable guy Adderall makes him. Last night when I told him exactly what I thought of his medication, I felt like I was confessing to hating one of his close friends or something. His reaction was similar. He sighed, admitting that he knew it wasn't the best for him, and he was already considering letting it go. Like telling the friend who isn't good association, "Sorry, man. We can't hang out anymore."

So now as he weans himself off of this drug, we're going t figure out what to do next. Until then, good riddance.

Monday, August 9

The Narcoleptic Parent - Dangerously In Love

Image courtesy of arztsamui/
Can someone with Narcolepsy really be a good parent?

My husband and I have one child. We adore her, dote on her, and watch the sun rise and set on her. She is a precious, genius child - and I say this with absolutely no bias at all of course. She is 3 years old. Because we have planned for just one child, ours is a very relaxed family in which she is the centerpiece. She's like the playing card that makes that cool sound as the bike's spokes turn 'round.

Notice that I said that we adore her.

I know that my husband loves our daughter. I'm also proud to say that he's a very good dad. He's never hesitant to get down on her level to play with her, read with her, or make up silly songs. I like seeing them together. As any mom would understand, it does my heart good. When Narcolepsy takes over, he struggles to treat her with love and kindness, even when he's tired or irritable. Sometimes he fails at this, but then again, sometimes I do too.

But I've never left medication within her reach.

This is a recurring problem for us that started about a year ago. When my husband was taking Provigil, this never happened. It was when he was switched to Adderall that the issues began. One evening, I was washing dishes when my then 2-year-old walked into the room chewing something. Immediately, I opened her mouth and wiped out tiny pieces of something orange and chalky. The color looked familiar, but I just couldn't place it. I investigated - checking each room, looking under furniture, going through her toy box... nothing looked even close to what had been in her mouth. I saved the fragments in a napkin and considered calling Poison Control. Because she was acting completely normal, instead I called my mother. Hours later, my daughter was still acting normal - except... she seemed a little hyper, she refused to eat or nap all night, and then she started to move her mouth in a weird way. It was barely noticeable, but eventually I realized that she was grinding her teeth! Then I knew. She had eaten one of my husband's Adderall pills.

That night was terrifying, but it could have been so much worse. Because I had wiped most of the pill out of her mouth, it was determined that a hospital visit wasn't necessary unless she started exhibiting certain symptoms that would indicate she was having an adverse or allergic reaction. I was instructed not to leave her unattended, and when she did fall asleep, to watch her breathing for several hours. Suffice it to say it was a long night. My daughter wasn't able to fall asleep until the next day. By then, my whole family was exhausted but relieved. She was OK.

Although I was initially furious with my husband, I got over it. It was an accident. He dropped a pill on the floor and didn't notice. Our daughter was fine, he would be more careful, life would go on. I let it go.

Until it happened again.

This time I found several pills on the floor of the car and got to them before our daughter did. The next time they were in-between the cushions of the couch. The next time the bottle was on the living room table. The next time I found a pill on the floor of the bathroom. Most recently, the bottle was on the sofa in the living room. Because no pill bottle is truly, absolutely child-proof, I consider leaving a bottle of prescription medicine within her reach just as dangerous as leaving a single pill.

We've had several discussions about my husband's carelessness. I know that he doesn't mean to put our daughter in danger, but that isn't the point. He resists any suggestions I make to keep his medication in one particular place because he prefers to keep it on his person. This also means that he sometimes leaves his medicine at other places and then doesn't have it when he needs it. Narcolepsy makes my husband incredibly forgetful. Believe me, if you aren't familiar with narcolepsy, you can't imagine. He literally forgets things all the time. It drives him nuts. Lists and nagging don't help - so his frustration with his memory is hard to watch. That's why he prefers to keep his medicine with him at all times. Otherwise, he might forget to take it. I'm sure there's a solution that will work for our family - we have yet to find it but I know it's out there.

As for my question - can a Narcoleptic really be a good parent? I think the tone of that question is a little inflammatory. Would I ask, can someone with cancer be a good parent? Can someone suffering from depression be a good parent? Can someone with any kind of chronic illness be a good parent? How about, Can someone out-of-shape, undereducated, poor, or ______________(Fill-in-the-blank) be a good parent? To me the answer is obvious. My husband knows that he can do better keeping our daughter safe. And he's willing to try. So no, maybe not everyone with a chronic illness is a good parent. Maybe they simply can't be because their illness is too debilitating. For others, maybe they do the best they can and are willing to try. To me, that's a good parent no matter what sort of health they're in - that willingness to try.

Thursday, August 5

Yes, Sleep Disorders CAN Kill You

Jimi Hendrix. From Johannas Visions

Jimi Hendrix, John Bonham, Anna Nicole Smith... my husband was almost on this list. People Who Have Died Choking on Their Own Vomit.

Officially it's called aspiration of vomit, which means that a person literally breathes in their vomit. This can cause breathing trouble, obviously, but it can also lead to choking, pneumonia, or asphyxiation. It happens most often when a person is too inebriated - either by drugs or alcohol - to realize that they're vomiting, probably because they're unconscious.

It can also happen when you suffer from sleep apnea and sleep paralysis.

I never knew that combination could be deadly. No one ever cautioned us either. But one night, it nearly cost my husband his life.

John Bonham. From DrummerWorld
This past March, my husband and I went to bed early. He had taken the weekend off so that we could attend a religious assembly, so we went to bed early in order to get up early the next day. A few hours later, I jerked up in bed, startled awake by the strangest, scariest sound I've ever heard - to this day the thought of it gives me chills. I didn't immediately realize that it was my husband. In fact, I couldn't place it at all. Terrified, I turned on the lamp and saw my husband jerking in our bed, vomit on his face and chest. I screamed his name and tried my best to help him sit upright or at least turn over. When he was able to move on his own a couple of minutes later, he exploded from the bed, rushing around the room still making that horrific choking sound.

I admit, I didn't do the right things. I didn't call 911, I didn't administer the Heimlich maneuver, and I didn't act calmly or rationally. Instead, I kept screaming, "What's wrong?!! Honey, what's wrong!!!" After several minutes of this, he gestured for pen and paper, which I promptly got for him. With shaking hands he wrote that he must have gasped in his sleep (as he often does), and started choking. He then regurgitated and since he couldn't move right away, he started to choke on the vomit in his throat.

Concerned that he may have breathed in some of it, I wanted to call 911, but he refused. We argued a little, but we were both so shaken that I gave in. He couldn't talk for a couple of hours and when he finally could, he voice was raspy and strained. When he was able to lay down again - on his side - I called his doctor.
AnnaNicole Smith. From The Sheila Variations
"I know it's after midnight and no one will hear this until hours from now, but I'm calling because my husband almost died just now and I'm a little upset," was my angry intro to the lengthy message I left. My husband is being treated at a local sleep center. I use the term "treated" with contempt. For over a year, they've done very little to help him. Very, very little other than writing prescriptions for a drug that doesn't seem to be working. My loathing for the "treatment" he's received will be the focus of another post, but suffice it to say I'm unsatisfied. But I never did anything about it.

Usually they take days to return our calls - if they ever do. Usually we end up calling repeatedly until someone transfers us to someone else who can then transfer us to the right person. After I left that message that night, they called back later that day.

That night was when I decided to become my husband's advocate. He could've died - that's all I kept thinking about for weeks. I usually sleep with earplugs, but I didn't use them that night. What if I had? What if we had slept separately that night? What if my husband died because he doesn't know much about the disorders that plague him and neither does his wife? We didn't know how dangerous sleep disorders can be until my husband almost lost his life.

I had to do something.

Tuesday, August 3

Cataplexy Isn't Funny In Person

When our daughter was born, my husband almost dropped her once.

I was enraged. How dare he risk our child's life by not being aware enough to put her down when he realized how tired he was?

Looking back, I can't believe how unreasonable I was.

The first time I remember meeting Narcolepsy's close personal friend, Cataplexy, my husband and I had been dating for awhile. He had this weird habit of taking deep breaths and closing his eyes whenever he was really amused at something. It was like he was trying to keep himself from laughing. Sometimes when I give into hysterical laughter, I get a bit of a piercing headache that goes away quickly. Sort of a laughter-brain-freeze, so I understood his desire to suppress his laughter.

But he wasn't always successful.

One day we were having a great time - dancing, laughing, playing around, and in the middle of laughing, he suddenly fell to the floor. Quite suddenly, actually. This was no slow slump or slide down the wall - he fell down like he'd fainted or something. Still laughing, I went over to him to help him up. I thought he was still joking around. I put out my hand.

From Vector Magz
"Come on, get up," I said.
When he didn't move, I stopped laughing and stared. He was just lying there, eyes open, his face still frozen in a smile. It was creepy. He looked like the Joker.
"Come on, knock it off," I said, and grabbed his arm.
It took a few minutes, but I finally got him to "unfreeze" and take my hand. By now, I was concerned... and confused.
"What's wrong? Did you hurt something?"
He didn't respond.
"Take my hand, I'll help you up," I said.
He whispered, "I can't."
I looked around as if someone could help us, but we were alone. I considered calling an ambulance.
"Why can't you get up?" I asked again.
His hand moved in mine - very slightly.
"I can't make a fist yet," he said.
Several minutes passed. Finally, he gained enough strength to sit up and I helped him onto the couch. Within 20 minutes, he was back to normal.

My soon-to-be-fiance was embarrassed and couldn't really explain what had happened to him. He told me that any strong emotion - anger, laughter, fear, even excitement - could cause him to "feel weak" and sometimes even collapse.

Baffled, I told him that he probably just needed a multivitamin.

Years later, after his narcolepsy/cataplexy diagnosis, I apologized to my husband for yelling at him the day he almost dropped the baby. I know that accidents happen and I also know how much he adores our daughter and would never intentionally put her in danger. He gracefully accepted my apology, but then I told him that I had a confession:

Once when I was changing her diaper, she fell off the changing table.

I swear I don't know what happened! One minute she was on the changing table, preparing for a new diaper, and the next minute she was on the floor, staring up at me with a really surprised look on her face. That's not the best way to discover that your baby has learned to roll over, but it happens. I was frantic but she was totally fine. You know, my husband didn't even get angry - didn't call me a hypocrite... he didn't miss a beat when he said,

"Good thing we had carpeting."

Sunday, August 1

Falling Asleep In Public

Image courtesy of imagerymajestic/
I remember the first time my husband fell asleep in public.

We were at a talk, nicely dressed, surrounded by other nicely dressed people. It wasn't an enormous crowd; but it was a roomful - a little over 100. While taking notes, I was distracted, but when I gave my hand a rest, I noticed my husband's chin was on his chest. His eyes were open - barely - but he looked like he was in some sort of stupor. I gave him what I hoped was an unnoticeable nudge, which only slightly helped. I kept a close eye on him after that. Sure enough, just a couple of minutes later, his head was drooping again. Then he dropped a book. When he nearly fell out of his chair, I leaned over and hissed, "Why don't you go get some water?"

I didn't really hear the rest of the talk. Instead, I was hearing an angry litany of questions in my head.

Why are you so tired? You got more sleep than I did last night!
This is so interesting! Why aren't you interested in this?
How could you embarrass me like that?
When you started feeling sleepy, why didn't you just get up and go do something?!!!

Of all the inconsiderate, selfish, embarrassing... how could he have done that... to ME? I hate to admit it now, but I really was mortified.

Long after that talk, the narcolepsy diagnosis, and a few years of marriage, we had a conversation in which I felt a sincere apology was long overdue.

An apology from me.

See, Narcoleptics don't get to pick and choose when they're going to get tired, have a sleep attack, or lose concentration. That's why it's called narcolepsy! My husband never intended to fall asleep at that talk or any other public event. He can't always get up and get some water because... he's falling asleep. He holds a book in his hand to try to keep himself awake. Most importantly, he doesn't mean to embarrass me - or himself. That's right. It's not about me - it's about how annoyed and embarrassed he must feel as the one actually falling asleep in the middle of a super loud movie, or a concert, or anything else that he would like to watch but can't.

Long gone are the days when I would see someone fall asleep at a public event and "tsk" under my breath. Yep, I was one of those people. Now when I see someone who can't stay awake, my only thought is if anyone else notices, they'll give the sleeper the benefit of the doubt.

We actually still attend talks every week. I still take notes, and my husband still falls asleep sometimes. It's OK though. The notes help me to tell him what he missed.