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Wednesday, October 27, 2010

To stay or go...?

We had another one of those weird talks today: discussing whether it might be better for Matt to have me live separately from him.

If you've read my earlier posts, you know that this isn't the first time we have had this discussion. I suppose the weirder discussion was the one where we debated the pros and cons of me moving back into the house with Matt. How many happily married couples have had to ask themselves that question -- should we move in together?

We love each other; heck, we even like each other! And we really enjoy living in the same space.

But it does take a toll on Matt's health. As he put it today, he feels better (finds it easier to fight off attacks of cataplexy) on weekdays than he does on weekends (when we are together pretty much 24/7), and he finds it easier yet when I am out of town.

Matt and I are not "just" spouses, we are best friends. We like to be together and want to share our lives into the future. We have found a balance of sorts at home that kind of "works" (though is not without significant cost to Matt's health).

Hmmm... I wonder if even Dr. Phil would be able to help us evaluate these choices? We could certainly use all the help we can get.

Stay tuned, kids -- this discussion ain't goin' anywhere unless and until someone cures this terrible disease. Because I love the one I'm with, even when I can't be with him.

I promise to update you as we continue to figure it out...



  1. So I read back through your older posts, and I can say with assurance that Matt's situation is one of the worst I have ever heard of. Being that GOOD can cause an attack... unthinkable and tragic.

    I didn't see anything about it, but has he tried meds geared towards stabilizing emotions? I mean SSRI's would not be enough, but valproate or lithium? I understand that he isn't experiencing a problem with severe mood swings, but if any spike in emotion causes a collapse... would he find relief in being stripped of some of the ability to have them?

    It sounds terrible to even write what I just did, but I don't know that avoiding those that you love because they illicit attacks isn't even worse. This is so sad, and I feel for him (obviously, I have N)- but you suffer deeply in a different way.

    Apart from the traditional sleep doctor, I have found the most relief from N in talk-therapy. My shrink may not specialize in treating those with my disease, but I have found coping strategies that most sleep-docs couldn't even fathom. My husband started seeing a shrink after my diagnosis because he had challenges with MY challenges, and he has benefited from it as well.

  2. I have seen how debilitating the attacks can be. I don't have an opinion, just wanted to weigh in with support.

  3. It's hard to understand the toll narcolepsy and cataplexy takes on a marriage unless you're in it. You guys are doing the right thing by communicating - keep it up!


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