Wednesday, October 12

Doubts and Self Destruction

Sometimes I wonder what I'm doing here.

I mean, in this marriage.

Lately, I've been having a real hard time differentiating between the narcolepsy - excuse me - The Narcolepsy and my husband. Usually I can easily tell the difference between the two, but sometimes it feels like they're one and the same.

It's sort of embarrassing to read my previous positive post about sticking it out when things are tough. When I wrote "It's so selfish to be willing to bolt when the bad days outweigh the good," I wasn't thinking of a day like the one we had recently. After that day, I thought, "That's it. I'm done." I'm not exactly sure what I meant by that, but I just wanted to stop the madness.

Once in a while my husband just doesn't seem to care at all about our marriage or himself. There are days when I think he's self-destructing.

What am I supposed to do about that? I can struggle to find another medication for him, one that doesn't cause drastic mood swings, one that doesn't have such detrimental side effects, but I can't force him to take it. I can suggest he try some of the things I've researched: a routine, an exercise regimen, removing certain things from his diet... but if he doesn't want to try any of those things, I can't make him. All I can do is try. It's just really hard to care when the person you're fighting to help doesn't seem to.

But I never said that it would be easy, I guess.


  1. I have had exactly the same thoughts. And when you bolded "The Narcolepsy" I knew exactly what you meant. I don't think I have an answer or even anything worthwhile to add -- except that I hear you and you are not the only one feeling like this.

  2. Thanks Robin,
    Sometimes that really all I need to hear to feel better. It means a lot.

  3. I have narcolepsy and rely HEAVILY on regimen, extremely strict diet (the Specific Carbohydrate Diet), and 400 mg of Provigil daily. And I constantly work to avoid being confrontational, cause sleep deprivation detaches me from reality and tends to make me a little combative when it hits. I understand your husbands desire to stop trying anything - I often have an overwhelming sense of despair.

    It sounds like there could also be other issues at work in your relationship, but a lifelong illness that currently has no cure and no truly good medication can be burdensome to a relationship.

    One time, I was an hour late for my midday nap and seriously feeling the effects (the alarm in my brain was shouting SLEEP or DIE!!). One of my parents decided that I needed to move something they had previously asked me to move and wouldn't take 'let me sleep and then do it' as an answer. My imbalanced mental state got the better of me and I went into a fit of rage, picking up the object and destructively moving it where it was supposed to go.

    My sleep attack doesn't forgive what I did, but if you and your husband have open conversations on fights, insults, etc., you might benefit from discussing how to tell when he's slipped into such a state and how to handle it. As you've said, you cannot make him better or force him to care enough to try something (unless you can somehow get your hands on the hypocretin nasal spray they tested on monkeys). I do not mean that you should in any way feel responsible for his 'mean-ness', I only mention my Suffering Hulk story to try to relate and maybe offer some small advice.

  4. I totally agree with you SeverianTG - open communication about any and everything is totally necessary.
    I love "Sleep or Die" that is exactly how my hubby describes it.

  5. I couldn't have put it better myself! It's so hard to keep telling yourself that it's the narcolepsy talking and not your spouse but it helps me. My fiancé is very loving and sweet. It doesn't usually get mad at little things but when he's extremely tired he has flipped out over something so little. It really hit me the other night how difficult this disease is for him. I was not feeling good and was woken up by our 4 month old daughter. I started changing her diaper and trying to get her back to sleep when I felt really naseous and faint. She really wanted a bottle but I couldnt get up with out feeling like I was (sorry if tmi) going to vomit every where. Now mind you in the 2 years we have been together I have never once purposely woken him up in the middle of the night for any reason. But like I said I was really sick. So I woke him up a hour before the time he needed to be up for work, and asked for him just to make her a bottle soi didn't have to get up. He freaked out worse than I ever saw him. I was so upset I cryed for 2-3 hours after that cause I felt so bad for waking him up. I didn't realize really how important sleep is. Even if it is just an hour. Or a couple minutes.

    1. I've been there too - my hubby gets quite irritable when he's awakened from deep sleep or if he gets too tired. You had every reason to ask for help that night, so don't beat yourself up over it. Hang in there!

  6. I'm new to the narcolepsy thing my husband was diagnosed not long ago, our son is 10 months old. I always accused my husbad of being lazy, and uncaring. Sometimes I feel like he uses his narcolepsy to excuse him from being part of our family. Somdays I want to just leave, say do it your self, but I can't. I want to help but I don't know how. I can't help him, I feel totaly useless. He's always sleeping or his medication amps up his sex drive and I can't keep up so he ends up locked away in a room. I feel alone an selfish for wanting more, how do you get used to this? How do I keep my temper when I feel like he stopped loving me when he was diagnosed?

    1. Neko, I understand how you feel. It feels like it's personal, doesn't it? But just remember that your husband didn't ask to have narcolepsy and IT is the enemy - not the man you love. Try hard to be patient while you guys find a medication that works for your family. Hang in there!