Narcolepsy Forum Posting

Posted by margie on December 10, 2004 at 09:10:42:

In Reply to: Lack of spousal support... posted by ZzzzMonster on December 03, 2004 at 14:24:15:

My husband has N, so I am the spouse.... I'm sorry to hear that your spouse thinks N is no big deal and isn't supportive.

Every situation is different of course, but perhaps you'll find some of my comments and/or observations insightful. If not, feel free to disregard them.

Even though I knew my sweetie had N when we got married a few years ago, I soon found out that there was A LOT that I had to learn about N and living with a person with N. There were two sources that helped me learn a lot. The first was this forum. I learned a lot about N that my husband hadn't told me (and probably didn't know himself). It helped to know that what my husband experiences is quite common. Secondly, I read the book "Narcolepsly: A Funny Disorder That's No Laughing Matter". I suggest that you ask your wife to check out both the forum and the book. If she's not willing to do this, seems like an appropriate issue to bring up with your therapist.

As a person with N, your symptoms are very normal to you. It's all you know. But to a person without N, the symptoms and behaviors of N are quite strange. For instance, sometimes my husband functions very well through the day with just the ocassional short nap, i.e., he drives, works, eats, does chores, cooks, plays, etc. In other words, he seems to function pretty much like me. At other times, he's totally out of it and just needs to sleep. And there's no way of knowing when it will be. So, to a person without N, it could easily appear that you're lazy, or using N as an excuse to get out of doing things, because we see you being so normal some of the time, or much of the time.

Even though it's not your fault that you have N, you need to understand that your spouse probably has extra burdens as a result of your N. That's just reality and you need to acknowledge that. Some of these burdens are probably pretty minor. For instance, when we visit relatives I usually drive so my sweetie can take a nap on the way there. Others may be bigger burdens.

Are you doing everything that you can to manage your N as best you can? I find that I'm much more understanding of my husband's N if I know that he's doing all he can to manage it; i.e. regular trips to his sleep doc, taking his medication as prescribed, taking scheduled naps, eating right, exercising regularly, keeping to a fairly regular sleep schedule, etc. When I think my husband did something "stupid", like drinking a ton of cola and staying up all night surfing the internet and disrupting his sleep schedule (which almost always results in a really bad day the next day)I get mad. Sorry, I can't help it, because it affects me too.

Try to remember that being the spouse of a person with N can be, well, lonely sometimes. When my sweetie has a bad spell and just needs to go sleep, I try to tell myself that he's just as disappointed that we're not doing something together as I am. It helps, but... it's still lonely. Fortunatley I have quite a few solitary hobbies to resort to when this happens.

It sounds like your wife is angry about your N. Hopefully she can move beyond being angry at you, since you can't change the fact that you have N. Has it occured to you that maybe your wife is scared? Maybe she's just trying to convince herself that N is no big deal and needs your help to understand that it is a big deal. Maybe she doesn't know how she can help you. Have you told her?

I'm sure if you stick with it you'll figure out how to work together and get the most out of your life together. Good luck.

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