Narcolepsy Forum Posting

Posted by margie on March 11, 2003 at 09:25:49:

In Reply to: problems with partners? posted by Texan_sleepy on March 06, 2003 at 13:20:25:

I'm sorry to hear that you're experiencing trouble with your boyfriend and that he doesn't understand N.

I am a partner of a PWN. My husband has N and I thought I'd share some of my thoughts, obeservations and experiences with you. Perhaps they'll be helpful.

* First, I want to say that I love my sweetie and would never give him up. However, I have to say that it is frustrating, challenging, living with someone who has N.

* I started reading this forum so that I could learn more about N and about my husband's behavior. I have learned a TON from reading others' stories and it has helped me tremendously in understanding my husband. So, continue to ask your boyfriend and family members to jump on this site. Just dating or living with a PWN does not give you the entire picture.

* You indicated that your boyfriend has done some reading about N. I don't know what he's read, but a book that I felt was really helpful was "Narcolepsy: A Funny Disease That's No Laughing Matter". See if you can get him to read this specific book.

* Living with someone who has N means that you have to develop flexibility. Things that you plan to do may have to change when the PWN has a bad day, or a sudden need to nap. This is VERY hard on the spouse or boyfriend/girlfriend or family. It doesn't matter that it's not your fault.... it's still very hard on us partners. Try to acknowledge that and let your boyfriend know how much you appreciate it when he's flexibile and accomodates your need to sleep.

* As you know, N is funny. Some times you can't stay awake, and other times you have terrible insomnia. (At least, it's like that with my husband.) To a partner or family member, this is really hard to understand and adapt to. I will see my husband have a bad day where he can't get any chores done, or any of the things we planned. Then, he'll turn around and be up ALL NIGHT surfing the internet reading about his hobbies and interests. Sometimes it appears that he chooses to sleep to get out of work and it makes me mad. It takes everything in my soul to try to understand that he doesn't do this on purpose. Your boyfriend probably feels the same way.

* Being a partner of a PWN can be very lonely. Just when you hope to spend Friday evening hanging out with your sweetie and having a quiet romantic evening, he has a bad day or evening and all bets are off and there I am trying to figure out how to salvage the evening and have some fun on my own.

* Are there things that your boyfriend can do to help you? If so, let him know. I help my husband wake up in the morning. It took us awhile to figure out how best to do that, but now that we have a routine, it works. I help him regulate his sleeps and naps - which helps a lot. If we're going to his parents to visit - I drive so he can get a scheduled nap in before we arrive. And so on.... try to find some practical things that your boyfriend can d.

* And, try to let him know that things that you do to help yourself. It often appears to us folks without N, that PWN aren't doing everything they can to help control their condition. Give him feedback on what you do and how it's going. When things change, let him know.

* I don't know if your relationship with your boyfriend will last. A longterm relationship with a PWN is not for everyone, and your boyfriend may be too young or immature, or just not the right type of person. (If you are considering marriage, and/or children, then it's very important that your partner understand what's involved.)

*This topic has come up in previous correspondece on the forum. You may want to scan through the last couple forums to get additional input.

*Finally, good luck to you. Let me know how it goes.

Follow Ups:

• Re: problems with partners? Texan_sleepy 15:16 3/14/03 (0)

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