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.

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.