Tuesday, September 14

When the Life You Live Gets In the Way of the Life You Want

It wasn't until today - this evening after I'd put our daughter to bed to be specific - that I thought, 'Oh right, blogging.' Yeah, it's been that busy. 

Isn't it interesting how we feel like Life is getting in the way?

I am an unpaid volunteer. My husband and I work as part of an international organization of unpaid volunteers and I love it. It is my life's work, my career, my priority. From September through November, I'll be devoting extra time to my volunteer work which means less time for other things.

Including my blog.

The truth is, I was feeling sort of disappointed in my blog in some ways. I really wanted to start this story of a family living with narcolepsy because I thought it would help my husband. But honestly, I'm not sure that it can yet. I think he's in a place in his life where he doesn't want help with his illness. I don't think he's adverse to receiving treatment or taking medicine, but only on his terms - which are often not what's best for him. It's a situation that is probably very common to many; no one can force you to take care of your health. Whether it's losing weight, depression, cancer, spiritual health - if you're not ready to face it head on and fight back, no one can do it for you.

So I got a little discouraged. It happens.

Then I thought of all of the kind words I've received from people following this blog, or those just dropping by. That makes ME feel good and I appreciate that. Let me tell you a little secret: for all of my bravado and positivity here, being married to someone with narcolepsy is really hard. I'll be the first one to admit that. Sometimes I feel like a single parent. Sometimes I get lonely. Sometimes I just get tired of planning our lives around my husband's illness. BUT...


I love him.
I want him to be happy. I want him to feel safe in this marriage. That means I'm not standing at the door with my bags packed, waiting for the last straw to drive me away. It means that I want to be here, even when it is hard, or I'm tired, or I feel like I never want to hear the word narcolepsy again. I don't want him to feel indebted to me and I want him to stop apologizing for something he can't control. I just want him to know that it's not that I love him even though he has narcolepsy. I love him. That's all.

Maybe I can get him to read this blog.


  1. Someone that I love dearly recently introduced me to this site. He is living with narcolepsy. I understand how busy life can be but even if the posts are few and far between it would be greatly appreciated. I have learned so much just in the short time I have been visiting. I appreciate your insight and thoughts immensely. Thank you.

  2. Hey - my wife reads your blog all the time (although she's pretty shy about posting comments I will admit). She appreciates it more than pretty much all the other blogs and groups and what-not I drag her into reading :-)

    I have to beg for her to read mine though.

    Probably a whole conversation on the whys and what-nots, but maybe just see if he will read any of the ones by other narcoleptic s that you have found - heck, send him to mine :-)

    And that isn't meant as a shameless plug - rather, sometimes it can be hard to confront the struggles we put the ones we love through. Maybe your blog is still a little too close to his heart...

  3. Thank you both for your kind comments. I'm so happy to have you following our experiences and taking some with you.

    I WILL send him to yours JD! I think you have so many goodies on yours, I'm sure he'll love the medical info.