When Your Marriage Disappoints You

It's bound to happen.
Not because you're a bad spouse or a terrible person.
Not even because you've fallen out of love.
After all, if you didn't love them, the bad days wouldn't hurt so much.
It will happen because no one wants their spouse to be sick. Yet, that's what our spouses are.
They are ill - chronically so - and that makes being married to them a little trickier sometimes. It requires a bit more patience, kindness, humor, and of course, love.
But sometimes, just sometimes, it's really disappointing to be married to someone who is chronically ill.
Take a breath because, it's okay to feel that way.
Say it aloud right now. Say it with me: "Sometimes I feel disappointed in my marriage, and that's okay."
It really is.
Maybe you didn't handle a situation in a positive way. Maybe you slipped up and blamed your spouse, rather than narcolepsy. Maybe you found yourself envying someone else's physically healthy marriage. Maybe you resented taking care of the kids, paying the bills, washing the dishes, or spending another night alone. Maybe you're just tired of having a spouse who's always tired. Maybe it's everything. Maybe it's nothing you can define.
The point is, it happens. Cry, pray, cry and pray, read this blog post and weep, whatever... and then let it go. The danger is not in feeling disappointed. Everyone feels disappointed in their relationship at some point, ill spouse or not. The danger looms when you dwell on the disappointment. Don't let yourself do that - ever. Fight the urge to focus on the negative! No matter what sort of day you're having, your marriage isn't all bad. Having a spouse with narcolepsy is not the worst thing that can happen to your family. Not by a long shot. So get it out, let it go, and move on.
Get it out.
Let it go.
Move on.
Journal, go for a walk, clean the bathtub, or put on some Ellie Goulding and dance your pain away. Whatever you do, let that disappointment go and get back to focusing on the positive.
If you want to save your marriage, that is.

How to Keep the Passion Alive In a Relationship With a Narcoleptic

Did you notice that the title of this post begins with How not Should I? This post is for those who want to make sure their marriage stays passionate. If you just ain't feelin' the passion anymore, or just don't care anymore, no worries. I discuss how Narcolepsy drains passion in another post. For now, let's focus on the positive and talk about ways to keep the passion alive!

Take the Lead. The truth of the matter is, quite simply, you're going to have to do most of the work. Let's be realistic. It's hard to feel or act romantic when you're tired. And our Narcoleptic spouses are often tired - extremely tired. That usually means that any initiation of romance is going to be left up to us. Of course, it can get a little old, always being the one to initiate the romance. But remember your focus is on keeping the passion alive - no matter who has to work harder to do so.

Keep It Simple. I used to exhaust myself with elaborate date nights or unique romantic ideas. While the drawn out plans are great, things don't always have to be complicated to be effective. Write a love note rather than a letter, send a text rather than make a long phone call, cuddle before a movie at home rather than hitting the crowded theatre. My hubby and I spend most of our date nights at home, and that's okay. I'm just happy to spend quality time together while he's awake.

Have a Backup Plan. Yes, it will probably happen if it hasn't already. Your Narcoleptic love may fall asleep during a date or other romantic time. It's happened to us repeatedly and although I don't get upset, rarely am I able to just laugh it off. The good news is, when you know that it's a possibility, you can be prepared. If your significant other tends to sleep for a long time, prepare to try again on a different night. If they'll wake after a brief nap, resume where you left off.

Spontaneity Is Okay. You don't always have to plan romance. Can you take advantage of a quiet moment? An unexpectedness tenderness or sharing a sudden laugh can be a great starting point for a quick touch or kiss. Never forget how much power an intense look or warm hug can have, too. Are the kids out of the house suddenly? Did you score a great freebie that you didn't plan on? Take advantage of the unexpected whenever you can. Chores and other duties will always be there, so sometimes, they can wait.

Be Flexible. Can you hang out with your spouse in the morning rather than at night? Reverse that if they're more alert in the evenings. Can you do something outdoors if they have a hard time staying alert during a film? Can you watch a film if they have a hard time being active? Try spending small chunks of time together rather than hours on end. Sometimes my hubby and I will spend an hour playing a board game and listening to music. Nothing exciting, but it works for us.

Do Something Everyday. Look into their eyes when you say, "I love you." Hold hands when you walk together. Kiss them good morning AND good night. Laugh at their jokes and compliment their efforts. When they reach out for you, reach back. Fight for the romance in your marriage every single day. It's simple logic: if you act more romantic, you'll feel more romantic. And then that first suggestion won't be so hard after awhile.

Be Patient With Your Spouse... and Yourself. Narcolepsy is incredibly frustrating. And unpredictable. And inconvenient. And did I mention frustrating? Your spouse chose you. Don't you think  that they want to spend quality time with you? Remind yourself of that - often. You are worthy of love, and romance, and passion, and so is your spouse. Every marriage should be based on mutual love and attraction, so work hard to make sure that Narcolepsy doesn't rob you of yours.

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 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.