Will a narcolepsy mom do? My oldest son is 36 and was diagnosed 18 years ago. He lives with hubs and I more often than not. Currently in residence. Never been married.

Sorting the malady from the misconceptions and side issues is nothing easy. My son won't talk about it with anybody I am aware of. Lone stranger all the way. Kinda hard to set up effective support without open, two-way dialogue. I could understand him not wanting to talk about it with Mom, if I wasn't trying to live with him. The either/or approach is killing me since the "or" means letting him live on the streets.

I especially hate it for my two grandkids. . . A 3 year old can't even say, "Narcolepsy," much less understand it or defend themselves from the outbursts.

I am 33 years old, married my second husband 3 yrs ago as of June, Diagnosed with idiopathoc hypersomia 2 years ago, 9 months ago officialy documented as a Narcoleptic and was put on disability and at this very moment I'm ' trying to figure out if I'm about to lose my entire life as I know it in a divorce. My husband and I have been together 7 years and up until my diagnosis of narcolepsy and being put on disability our marriage was amazing. My husband has 4 children from his previous two marriages but these children are my children. I have raised them for the past 7 years, been there for every moment they needed me and even the ones when they didn't need me. Ever since I have been home on disability our whole life has changed. My husband does not understand narcolepsy and says that I should be capable of working an 8 hour day at home just as I would have at work. Because I have to take naps and sometimes I fall asleep for hours without realizing it all the blame was put on me and I'm told that I'm lazy or I don't care because I just I want to sleep. I have tried to talk with him and the children about narcolepsy, but they didn't want to listen. I printed out information for them to read and got documentation from my doctors for them to read, but they never even attempted to learn anything about Sleep disorders. With no support I'm on my husband and children I have in a sense become lost. I try so hard to please everybody and I still try to do as much as I used to in the same amount of time but it's just not happening. Although I still do all of the housework yard work and Farm work by myself, the house is not incomplete order like it used to be therefore I continue to get emotionally ridiculed by them. Nothing I do gets recognized but everything I don't complete gets thrown in my face continuously. I can not make anybody understand and I cannot make anybody who's unwilling to even try and learn about what we're dealing with help with changes in our lives that have to be made. It since I've tried everything I can 2 get my family to help support me with something that is completely new to me as well, everybody has turned against me like I'm just the laziest, meanest person ever. As a result I am getting divorced. I still love my husband and our children as I did the day I met them but it has gotten to the point where I emotionally and physically cannot go on with the ones I love not being happy even if it's over something they don't understand.

Hi! I too am struggling with Narcolepsy and the struggle with my life change. It has caused havoc on my marriage and I do. It know how to handle this. My husband does not understand nor does he want to. He complains about the my schedule now because I am on Xyrem. He complains about my meds. He complains about it all rather then learning about it. I am still learning myself so I do t know how to make him understand. I am becoming very depressed and I feel alone. I am kit sure what my next step should be.

RMj13, I think it's a positive step for your marriage to post here. Reaching out and trying to learn about your husband's condition is the right place to start. I have Narcolepsy, have had it (I believe) since I was a teenager. I've been married 20 years and have come close to loosing that marriage multiple times in no small part because of my condition. Thankfully, getting it diagnosed has opened doors for us. That "Of Course! It's Narcolepsy! No wonder she has these issues!" has been a total game changer in our marriage and my ability to get treatment. First thing you can do is learn about his symptoms. He doesn't mean to forget or misunderstand things you've said. Try not to take those things personally. I know that's hard. He doesn't mean to zone out during conversations, or back out on activities. Narcolepsy is a hidden disease, meaning so many of the symptoms look like laziness or disinterest. But they truly are unavoidable, even if he tries his hardest.
It's ok to be a little selfish. Because you are affected too. But it's very important to understand that people with Narcolepsy don't WANT it. And they don't want all the difficulties that comes with it. I also have 3 kids and they are very unfortunate to have a mommy that can't consistently play with them or spend quality time with them. It fills me with guilt. Your husband may feel the same??
Learn about the symptoms and express compassion when they happen. Understand that many of the behaviors that look like him being a self centered jerk might not be what it looks like. That's my best advise. Narcolepsy Network has some good medical and practical information.
I also think it helps non-narcoleptics to understand the disease to try to relate in this way...
Have you ever crammed for finals in college? Spent 3 or 4 days getting maybe 2 hours sleep a day if you were lucky?
Or been a new parent with a sick baby? After the 4th day of almost no sleep, you start to feel foggy headed, slow to process information and grouchy. There can come a point when nothing else matters in the world except sleep. Like needing water when your in a desert.
Now apply that feeling as the baseline feeling for a Narcoleptic. We never consistently feel normal or rested. The struggle is constant, even when it can't be perceived by others.
I hope my ridiculously long reply actually helps. ;) Good luck to you.