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.

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.