Friday, July 30

Those Who Understand

So I've been trying to find a message board/forum for Narcoleptics and their families. Fortunately, there are a ton of resources out there! Now it's a matter of picking and choosing which one to sign up with. I don't intend to join several, since realistically, I'll probably only be able to regularly post to just one. Here's are my initial reactions:

Image courtesy of artur84/
SleepNet - this site seems OK. I'm not crazy about the layout, but it isn't complicated. Seems to have a lot of resources, links, and info which is awesome.

Talk About Sleep - I like their slogan, "All Sleep, All the Time." I'm not into all of the ads on the 1st page, but maybe that's how they keep it free or something. The message boards seem really active, which is great!

Narcolepsy Network Forums - I've used this site a lot to educate myself, but I've never looked at their forums. Seems active, nice layout, but I'm not sure yet...

People With Narcolepsy - This one looks pretty good, but it doesn't seem too active. I really like the layout, but maybe it's a newer site because it doesn't seem have a TON of members. Maybe that's a good thing.

Wednesday, July 28

When Narcolepsy Takes Over

Being married to a Narcoleptic is like living with two people: There's your beloved spouse, who has several wonderful qualities (of course, or why would you have married them?) and whom you love dearly, and then there is the Narcolepsy, who is selfish and aggravating and whom you may sometimes tolerate, but you actually hate with a passion.

My husband is so funny. He makes me laugh every day, which is awesome because I love to laugh. Sometimes it's silly self-deprecating humor, sometimes it's witty little comments about life. He is also very kind. He's one of those people who sees a teary-eyed kid alone in a store and starts walking over before I even notice anything's wrong. He is incredibly resourceful and clever, smart and confident, and he is a really loving husband and father. I adore him.

Image courtesy of Ambro/
My husband's Narcolepsy is his unwanted but constant chimera. It's completely selfish; no matter what we're doing or what we've planned, Narcolepsy gets first dibs at my husband's time. It interrupts him at work, during dinner, on a date, while playing with our daughter, or even while he's trying to relax and enjoy a movie. It has no concern for his health. It often robs him of his memories, motivation, energy, and adds to his anxiety. It likes to scare him with horrific nightmares and tries to control him when he drives. It's already taken several years of his life, yet it refuses to give in and resists any medications we feed it. I hate Narcolepsy and I wish it'd never met my husband.

That's really how it feels to me.

I can look into my husband's eyes and instantly know when I'm looking at my true love. His eyes are warm, patient, loving, and sparkle with mischief. I gaze into them and feel a true sense of belonging to another human being.

I can also look into his eyes and recognize when Narcolepsy is looking back at me.

Even to this day, it astounds me that I can look into those same eyes and see a cold distant anger, tiredness, annoyance, and disdain. I cast my eyes downward when I look into Narcolepsy's face. I refuse to look it in the eye - not because I'm afraid, but because I'm enraged. I resent it for hiding behind the face of the man that I love. But rather than give in to the anger that it wants me to show, I swallow my words and treat Narcolepsy with tenderness. I know that my husband is also in there, waiting to take his place again.

Monday, July 26

Narcolepsy's Close Personal Friends - The Sleep Disturbances

As if Narcolepsy wasn't bad enough, it usually doesn't travel alone. It likes to gang up on its victim with it's thug buddies: cataplexy, sleep apnea, sleep paralysis, and hypnagogic hallucinations. They make quite an effective team.
My husband suffers from the entire group.
  • The definition: Cataplexy is an abrupt loss of muscle tone, usually triggered by a strong emotion.
  • His experience: If my husband laughs too hard or gets too emotional, he'll literally fall to the floor, unable to move for several minutes. You know that hysterical laughter that makes your eyes water and doubles you over? He can't do that.
  • The definition: Sleep apnea is pausing in breathing or shallow breathing while you sleep.
  • His experience: My husband stops breathing in his sleep. Sometimes this will last so briefly that I barely notice it, other times, he doesn't take a breath until he wakes up gasping for air.
  • The definition: Sleep paralysis is an inability to talk, walk or move, either before or after sleep.
  • His experience: Sometimes when my husband is very tired, he can't move. This happens most often when I try to wake him. I have to shake him for several minutes while calling his name to help him regain control of his limbs.
  • The definition: Hypnagogic hallucinations are like waking dreams that incorporate the person's real environment.
  • His experience: When my husband is falling asleep, occasionally he'll confuse reality with what he's seeing in his head. Here's a prime example:
Me, I mean, Janet Jackson from The 80s Man

One night, we were talking before we went to bed. Little did I know that my husband had already fallen asleep, but was still talking to me. His eyes were wide open and he seemed lucid. When I noticed that he was slurring his words, I asked if he was alright.
He angrily replied, "I'm fine Ms. Jackson."
His tone threw me, because 'Ms. Jackson' sounded like some kind of insult. Confused, I asked, "Why are you calling me Ms. Jackson?"
He replied, "Because you are!"
I said, "What? Who am I?"
He said, very sarcastically, "Janet!"
That's when I realized that he was soooo not awake anymore. When I later told him about our conversation, we both cracked up.

I love relating that story because it's one of the few times that we've been able to laugh at his illness.

Saturday, July 24

Return of the Narcoleptic Nightmare

Image courtesy of chrisroll/
Last night was not a good one for my husband. He tossed and turned so much that I wondered if he was getting any actual sleep. Finally, he cried out several times - no actual words, but he sounded terrified. I called to him to tell him he was dreaming and to "Wake up! WAKE UP!" It took a little while, but he finally gave me a groggy acknowledgment and promptly fell back to sleep.

Later, when I asked him what had terrified him so, he couldn't even remember. Maybe that was a good thing, because he sure sounded scared out of his wits that night. My husband hasn't had night terrors in awhile, but they do still crop up every now and then.

Night terrors and horrific nightmares are another scary, debilitating symptom of Narcolepsy that my husband has long suffered through. His nightmares and hallucinations are fascinating, frightening, and sometimes (but rarely) funny. He often reacts to whatever is happening to him in his nightmare - talking, yelling, thrashing...

There have been times when my husband's actions while he slept were intimidating. In fact, I was fascinated by the story of a British man, Brian Thomas, who murdered his wife in his sleep. It's a bizarre experience, but I totally understood it. You can read the full story here: CNN Story. The article doesn't say that the man suffered from Narcolepsy, but he suffered from "night terrors" and other "sleep disturbances" for many years without being treated. His experience did make me think - have I ever been afraid my husband would actually harm me in his sleep?

The truth is yes, but I've never actually feared for my life. Things have happened before, but never to such an extreme that I was afraid. Mostly, it's just been annoying. Rarely I'll be awakened by a jab or hit as a result of him flailing or hitting out in his sleep. That's not a fun way to be awakened, but it definitely isn't life-threatening.

For that reason, although we go to bed together, we usually end up sleeping separately about half the time. We both seem to get more rest that way. Plus, I admit, I relax a bit more when I'm sleeping alone.

Thursday, July 22

The Narcoleptic's Family

In my husband's family, his sleep pattern was a running joke.
Image courtesy of artur84/
"Where is he?" someone might ask.
In response, laughingly, "Lemme guess... asleep!"

No one ever wanted to wake him. Since he would often wake violently - flailing, shouting, or even hitting out at something or someone - waking him could be a scary event! He was often considered lazy, antisocial, weird, moody, and someone who "just loved to sleep." Once as a gift, one of his siblings even bought him a t-shirt that read: "Consciousness. That annoying time between naps."

Sure, it was funny... sometimes. Then we got married. Living with my husband meant being with him on a daily basis, sleeping next to him, and observing him throughout the day. Over time, it became obvious that something was seriously wrong. I wondered how anyone who had ever lived with him had missed indications that he was barely keeping it together most of the time. His sleep patterns were the most telling:
  • He talked, shouted, and occasionally even screamed in his sleep.
  • He would fall asleep all of the time - even after just waking up.
  • He was always physically tired, sometimes even too weak to get up from bed.
  • He would often go on food binges in the middle of the night, leaving a huge mess but barely remembering it the next day.
  • It was nearly impossible to wake him up.
  • When he went to bed, he would fall asleep instantly - literally.
  • Most alarmingly, when expressing a strong emotion, sometimes he would suddenly collapse, falling to the floor, unable to move.
Years later, my husband told me that when he was a child, he would often fall asleep in the car when he and his family went somewhere. When they arrived at their destination, everyone would try to wake him, calling his name, yelling for him. Although he could hear them, he couldn't move. This terrified him because he was awake, but he could not open his eyes or give any indication that he wasn't actually asleep. It wasn't until someone would physically shake him that he would be "unlocked" from his frozen state and could move.

I don't fault my husband's family for not knowing that he had Narcolepsy. After all, he didn't even know that he had it. They were leading their own lives and probably chalked his symptoms up to what many of us would - he needed more exercise, vitamins, fresh air...

If someone you know and love exhibits any symptoms like those I described in this post, don't hesitate to have them see a doctor. It may not be narcolepsy, but it could be a sign that something is wrong. Sometimes that's all it takes - a concerned family member who says, "Something isn't right."

Tuesday, July 20

History of A Narcoleptic

I thought of titling this post, "The Narcoleptic Who Didn't Know What Was Wrong," because that's exactly how it went for my husband. When I first met him many years ago, he was a shy, quiet teenager who had a tendency to sleep a lot. As he got older, he also seemed to have plenty of mood swings, but what teenager doesn't, right? His mother often even jokingly commented on his moods and sleep patterns.

When I met him again as an adult years later, I discovered that his long bouts of sleep were even more dramatic. He would sleep for hours and hours, yet never felt refreshed. He also had a terrible memory and always seemed tired. In the back of my mind, I knew that something wasn't normal, but I was thinking more along the lines of some sort of vitamin deficiency or something. (Ironically, it turns out that Narcolepsy is an auto-immune disease).

Before our child was born, I finally convinced my husband to mention his sleep issues with our family doctor. When he did, the doctor immediately said, "You need to see a sleep specialist." It was a relief to have someone else (besides me) demonstrate alarm at my husband's symptoms.

Image courtesy of vectorolie/

The sleep study and subsequent research revealed the obvious: my husband's sleep patterns WERE NOT NORMAL. When he was officially diagnosed with narcolepsy, cataplexy, and sleep apnea, I actually felt happy! I wasn't crazy! He wasn't crazy! Something was wrong - really wrong - and now we knew what it was! He wasn't lazy or feeling sorry for himself or just too tired - he was a man with an illness. So many other people suffered the same symptoms. There were support groups, books, information, medications... now we could fight this thing! Finally, we knew what to do!

Sort of.

So began the long road of The Narcoleptic's Journey. Still traveling.

Sunday, July 18

The Narcolepsy, Not the Man

So I had a conversation with my mother today that left me feeling pretty guilty. Although we only spoke for a few minutes, by the time we hung up, I felt as if I'd spent hours railing against my husband. In retrospect, maybe I did. I often think that I confuse the two: my husband and Narcolepsy. Over the years, I've come to think of myself as being married to two different people: my husband - whom I chose to marry, and Narcolepsy - who tricked me into marriage.

It's the Narcolepsy that I think is lazy and unmotivated, careless and forgetful, annoying and dull. My husband is none of those things. Instead, he's funny and interesting, smart and resourceful, motivated and hard-working. Those are some of the reasons why I fell in love with him.

Narcolepsy is such a betrayal of who you really are. It literally transforms my husband into a different person - a person that I sometimes don't recognize, and sometimes barely tolerate.

But I don't think I conveyed any of that to my mother. That's what left me feeling guilty. I am just barely beginning to understand this illness, so I'm pretty sure my mother doesn't fully comprehend it. I think that I will make a vow: I will only vent about my husband's condition to those I'm confident will understand the extenuating circumstances.