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Mom Confessions Mom Confessions

I hate my husbands disability EDIT

Posted by on Jan. 22, 2013 at 2:07 AM
  • 76 Replies
1 mom liked this

I think I've posted about this before, but I really, really hate it. I know it's long- but please read anyway. I need encouragement.

He has narcolepsy, which is a neurological disorder that kills the hypocretin in his brain and keeps him from being able to sleep through a full REM/NREM cycle. He can't go into a deep sleep, so he's always tired. Then, at random times, when he doesn't WANT to, his brain will try to FORCE him into a deep sleep during the day... and he'll fall asleep without warning. It comes with a million side effects... anything you can think of for a person who has gone without sleep for say... 72 hours or more.

Anyway, so yes, I said for better or worse. I said I would take this on, and we would make this happen.

But nowhere in that, did i promise to be an eager, happy participant who looked FORWARD to it every single day. I think maybe mom's who have kids with disabilities might understand this...?? It's frustrating. It makes me ANGRY. HE makes me angry.

I try. I really do. I want to be supportive and I have to regularly remind myself that it is the disorder, not his character, that is causing the issue. He can't control it, so he's not purposely falling asleep... he doesn't WANT too, he just is.

But dammit... falling asleep on top of me during sex? Cataplexy (a cross between seizures and strokes) during orgasm? Falling asleep while we're arguing, or discussing important things? FUCK! How do you NOT get angry?!?!

I'm angry. I hate it. I hate what I have to deal with day after day. And what I hate more than ANYTHING is when I express my anger to a friend or family member, and try to vent about the frustrations, and they say "hey he can't help it... give him a break." A BREAK?! Are you serious?! I get angry and frustrated and pissed off about every 3-4 months... at the MOST. I "give him a break" and "let it go" every. single. day. I hold it in and I talk myself down, and I push back the anger and try to let go of the hurt because I KNOW. I Know I know I know... it isn't his fault.

So at what point am I allowed to say this freaking SUCKS? When can I say SCREW YOUR DAMN DISORDER?? When am I allowed to blow of the steam? When am I allowed to say "It really hurts me that you fall asleep during sex. My feelings are hurt, my heart is broken... I'm not worth even staying AWAKE for and I can't help how it makes me feel." When? When can I admit that I am SO over it???

Anyway... so ya. I'm at my breaking point... which I'm being told that is NOT okay because hey, I signed up for this so I'm not allowed to be negative.


I thought I'd add this in, so I don't keep repeating myself... :)

First off, thank you all so much. It's really helped to read your responses. You have no idea!!

I get a few common questions, so here are the answers:

No, there are no support groups in my area for this. The awareness of the disorder is like, nil. I'm working on changing that, but I have so many things on my list I don't really have the time to do the work and get it started from scratch. I'm in contact with a website I found on the east coast "wake up narcolepsy" that is supposed to be getting me in touch with their contacts in my state, but I haven't heard anything back yet. There are a few online forums but they are very LOW traffic, and mostly set up for those WITH the disorder, not for family member support...

He is taking heavy medication for his disorder. Prior to meds he had 80-100 episodes a week, with medication he was about 10-15. Drastically reduced, but still extreme. His last appointment they discovered he was at 15 episodes a week "normal" for narcolepsy is 13 or less...13 being on the high side. So he's still pretty extreme.


by on Jan. 22, 2013 at 2:07 AM
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Replies (1-10):
acrogodess
by Ruby Member on Jan. 22, 2013 at 2:10 AM
1 mom liked this
You are entitled to your feelings. Even knowing he cannot help himself doesn't stop you from feeling hurt. Those aren't very understanding friends. You aren't saying you hate your husband. You hate his condition.
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Mrs.Pedro
by Gold Member on Jan. 22, 2013 at 2:15 AM
Hmm. Have you tried writing it all out? Then maybe let your husband read it, then write back to you. That way there's less tension in the discussion and if he falls asleep then he can just come back to it. I'm sure its frustrating for both of you to go through and you need an outlet.
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Anonymous
by Anonymous 1 on Jan. 22, 2013 at 2:18 AM
My dh and DS are both disabled. It sucks it really does. I find writing in a journal helps. Good luck.
livn4hevn
by Silver Member on Jan. 22, 2013 at 2:19 AM


which is true, but honestly I take it OUT on him. For instance, I don't want to have sex with him anymore. because he falls asleep. So even though it isn't his fault, it's effecting our sex life.

Or when he falls asleep and I'm talking passionately about something- maybe just an idea I have, or a discussion we really need to have about the kids/financies etc... and he'll sleep. Like really?! I get MAD at him. I shake him awake and tell him to stand up, jump up and down, SOMETHING. JUST STAY AWAKE.

He'll fight his meds at night that help him sleep- that pisses me off more than anything. He's supposed to go straight to sleep but instead he will go to the bathroom, get a drink, smoke a cig, any number of things. It sucks because more often than not he falls asleep in some random place and I have to drag his ass back to bed. It's irresponsible and it's a pain in the ass.

Its things like that. I don't want to hug him or kiss him sometimes- because I'm so bitter about his disorder that I get bitter towards HIM... ya know? I'm so upset over how he slept through our son's school performance that I can't even be loving. Things like that.

Quoting acrogodess:

You are entitled to your feelings. Even knowing he cannot help himself doesn't stop you from feeling hurt. Those aren't very understanding friends. You aren't saying you hate your husband. You hate his condition.



livn4hevn
by Silver Member on Jan. 22, 2013 at 2:21 AM


thanks... do you ever tell THEM how you feel or do you try to keep it from them? Or do you ever find yourself treating them differently because you can't hold back your frustration after a while?

Quoting Anonymous:

My dh and DS are both disabled. It sucks it really does. I find writing in a journal helps. Good luck.



Shelhead
by Michelle on Jan. 22, 2013 at 2:22 AM

I'm sorry. You have every right to feel hurt. Is there no med the drs can prescribe to help force him into a deeper sleep?

Anonymous
by Anonymous 2 on Jan. 22, 2013 at 2:24 AM

Maybe its fine to say all of those things and take a couple hours for yourself, then go back to him and tell him how much you really love him and who he is? Give him all the love you have for him, but for your own happiness, you have to be open with him.

Anonymous
by Anonymous 3 on Jan. 22, 2013 at 2:25 AM

I would probably end up laughing half the time if my dh had that....sorry, I'm no help.

Anonymous
by Anonymous 4 on Jan. 22, 2013 at 2:26 AM

Vent away honey, I hear ya!!!

My hubs has fibromyalgia and has power enough to go cultivate and smoke pot but it hurts too much for sex (even if I do most of the work)?? Or to help around the house?? He has enough strength to visit with the grandkids and his older kids but not enough to attend our kids school meetings??

I too get very angry what appears to be selfishness and the ease to blame his disability without trying to correct anything. Good Luck!!

livn4hevn
by Silver Member on Jan. 22, 2013 at 2:27 AM


ya I mentioned this in a reply... he takes a good med, the best they have out there, but his disorder is so extreme (he's in like, the bottom 1% for having all four symptoms to their highest extent...it's not only a rare disorder, but he has the rarest forms... FUN!!! lol...) it doesn't always prevent EVERY episode, every time.

Before medication he had an average of 80-100 symptoms and episodes per week. Now, with medication he has about 10-15. MUCH  better, but still difficult. He'll never live a normal life...and his life expectancy has been greatly shortened. One of these days I'll be wiping his ass and bathing him. It gets that bad.

Quoting Shelhead:

I'm sorry. You have every right to feel hurt. Is there no med the drs can prescribe to help force him into a deeper sleep?



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