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Hubby Just Doesn'T Get It....


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#1 amazingracie28

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Posted 02 February 2010 - 10:50 AM

I just seriously need to vent before this eats me up. I get so sick and tired of people (family especially) not getting the whole Narcolepsy thing. You would think the people closest to you would take the greatest interest in it, or make some sort of effort to understand it. NOOOOO.

Case in point. Every morning it is my responsibility to not only get my own narco'd butt out of bed, but then wake up my husband and twin toddlers on time. I have N. and Lupus and am tired and sore and all the fun stuff that goes with that. Now usually I have to nag and nag to get the hubby out of bed at which point he has just enough time to get his own stuff done and out the door leaving me to wrestle two 4-1/2 year olds with no help. This morning one of my sons asked him for something and he said he couldn't do whatever it was because he barely had time to get out the door on time. I made the comment that he needs to get out of bed earlier and do you know what he said to me? "I can't help it, I'm tired.".....WHAT??!!! Do you not know who you're talking to???? REALLY?!! Of course this lead to an arguement because HELLO-DOES HE REALIZE WHO HE'S TALKING TO? I don't get a free pass because I'm tired....EVER. I'm on almost the full dose of Xyrem and who do you think gets up in the middle of the night with the kids....ME! I've gotten holy crap good at functioning while in the midst of a full on Xyrem session. Lord forbid I ask him to go downstairs and take care of something for the kids b/c I've taken my meds...all I hear is complaining all the way down the stairs. I feel like I want to SCREAM.

I even started a narcolepsy blog to give some sort of account of the life of a narcoleptic thinking that maybe family would read it and get it a little more. NOOOOOO. I mentioned to the hubby that I actually have some subscribers on my blog and he says, "you're still doing that?". So much for taking an interest. I'm just so extremely frustrated that I can't get any rest or catch a break here. I do 90% of the housework, the bills, the budget, all the kids school stuff, work a full time job and stay on top of everything else that goes on in the house. I feel very unappreciated and frustrated.

I'm not trying to demonize my husband-he really is a good guy but I'm extremely frustrated that something that affects my life in so many ways is just brushed off. Thanks for letting me rant everyone...I really needed it.

#2 jenji

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Posted 02 February 2010 - 01:35 PM

Lord forbid I ask him to go downstairs and take care of something for the kids b/c I've taken my meds...all I hear is complaining all the way down the stairs. I feel like I want to SCREAM.



Amzgrace,

You should scream. He sounds like a putz and you are 100% justified in your frustrations. Not cool.

jenji

#3 ohiolor

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Posted 02 February 2010 - 02:49 PM

I read your post earlier today...and didn't reply because it really upset me....so I figured I'd wait a bit for the mad to go away...it didn't...so here I am.

First of all, "Gracie" you truly are "Amazing"! To work outside the home, single handedly run a household, and raise 3 (yes I said 3 children) is amazing given that you have N and Lupus. Please correct me if I am wrong, but I assume your husband is an able minded and disability free adult. Therefore, he needs to start taking responsibility for himself! You are his wife, not his mommy, and he needs to get himself up in the morning and also pitch in getting his kids ready for the day. A marriage should be a 50/50 thing...yet you appear to be doing 90%....something is wrong with this picture. Grrrrrr...ok, I'm still angry (my fingers are shaking as I type) so hopefully I'll be able to add more later that might be more helpful.

By the way, I don't have Narcolepsy...my husband does.

Lorrie

#4 amazingracie28

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Posted 02 February 2010 - 03:11 PM

I read your post earlier today...and didn't reply because it really upset me....so I figured I'd wait a bit for the mad to go away...it didn't...so here I am.

First of all, "Gracie" you truly are "Amazing"! To work outside the home, single handedly run a household, and raise 3 (yes I said 3 children) is amazing given that you have N and Lupus. Please correct me if I am wrong, but I assume your husband is an able minded and disability free adult. Therefore, he needs to start taking responsibility for himself! You are his wife, not his mommy, and he needs to get himself up in the morning and also pitch in getting his kids ready for the day. A marriage should be a 50/50 thing...yet you appear to be doing 90%....something is wrong with this picture. Grrrrrr...ok, I'm still angry (my fingers are shaking as I type) so hopefully I'll be able to add more later that might be more helpful.

By the way, I don't have Narcolepsy...my husband does.

Lorrie



Thanks Lorrie and Jenji for making me feel like I'm justified in my complaints. Sometimes when I'm upset and rant I end up feeling like I shouldn't have and maybe that I overreacted. Yes, my hubby is 100% able minded and disability free. He has a 1-1/2hr commute to work one way and is usually pretty worn out by the time he gets home at night, but dang it I'd rather have that kind of "stress" sometimes. I love my boys to death and am so incredibly blessed to have them but man, little boys can sure take it out of you! I'm just so mentally and physically drained and I need some help. Its hard for me to articulate that effectively sometimes because when I try to find the right words my brain turns to mush and blank out. I do the best I can to keep everything together and running smoothley from day to day...I just need my husband to be a little more proactive instead of me nagging at him all the time-honestly, who really wants to be a nag?

Lorrie-you are so very awesome for coming on here and supporting your hubby and trying to understand all this stuff. I'm sure it means the world to him!

#5 Saraiah

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Posted 04 February 2010 - 07:59 PM

Hi Amazing,

You truly are amazing!! Sometimes I think the universe really ought to give out medals at the end of each day, to all of the unsung miracle workers who do amazing things, starting by getting out of bed in the morning. You'd have so many medals, you wouldn't be able to stand up!

It sounds like you are doing SUCH a terrific job caring for the kids, and I'm glad your husband is a good guy. It wasn't many months ago when I was posting about my husband thinking of leaving me because he wasn't sure he wanted to be married to a person with narcolepsy. Thankfully, with a lot of marital work, he's completely come around.

In my experience, a few things have been important. One is to do the fighting away from the kids - which can take a LOT of deep breathing when your spouse is really, really ticking you off. Another is to problem solve with my husband a LOT. I try to articulate exactly what is going on for me, since my husband often completely misinterprets my actual feelings, and why I do a particular thing.

And another is to let natural consequences take their toll. For example, why are you in charge of awakening your husband on workdays? He's a grown-up, and you already have WAAAY too much on your plate. So one suggestion would be, at a calm moment, to let him know that he's now responsible for setting his own alarm and getting himself up in the morning. Ahead of time, go ahead and get him his own alarm clock, so that there's no future issue of "The alarm didn't go off so you must not have set it, AmazingGracie!" Just calmly let him know that it's too much stress to get the kids up and ready while also being responsible for his getting up. And then, just let him sleep late. If he's a responsible guy, it won't take too many mad dashes out the door to be late for work before the task of mothering him in the morning is off your radar screen. It may take him a lot longer before he becomes equally responsible for parenting your children - but you at least have control over not having to parent him in the meantime.

I hope that helps just a little bit. Let us know how it goes. And as maddening as it is, keep fighting for yourself, your marriage, and your kids. Marriage takes SO much work, but when you're married to a truly good person, it is very worth it.

Saraiah

#6 Mee

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Posted 12 March 2010 - 11:00 AM

Well said! Thats exactly how I've been feeling lately.

#7 amazingracie28

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Posted 12 March 2010 - 04:22 PM

Well said! Thats exactly how I've been feeling lately.



I agree with Mee-very well put.

Its oddly coincidental that your wife says "wonder if N is contagious" -my husband says the EXACT same thing. Yes, I know its meant to be funny but its just.......not.

I reread my original post and I'm a little embarrassed for unloading like that.....sheesh Posted Image I hate unloaders remorse.

#8 amazingracie28

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Posted 12 March 2010 - 08:11 PM

Don't be embarrassed, it's good for other people to know that somebody feels just like they do. Myself included. I get why it's hard to understand N. Or have compassion. I mean, if somebody is in pain, it's easy to have compassion. Because people understand pain. They wouldn't tell somebody who just had spinal surgery "god is my back killing me! Are you sure degenerated vertebrae aren't contagious?"

And they think they understand tired, because chances are they have been as tired as we are at some point. But what they don't get is that with N it's all the time. Always. Not only do I have to try and live with the hellish present, but I have to live with the knowledge of what the future is probably going to be like. They see movies and think N is where you're awake and normal all the time, except for those annoying (albeit HILARIOUS) times when you fall asleep standing up.

They don't get that naps don't refresh me but make me minimally functional for a short while. They don't get that feeling like this makes me short tempered a lot. Instead of asking "why are you so grumpy and sluggish today?", they should ask the rest of the time why I'm NOT. They don't get what it's like to have the people who are closest to me in the world doubt me and question me and think I'm crazy. They don't get the inhuman effort it takes for me to just get through the day.

And I get that they don't get it. Because it's impossibly hard to make people understand. Telling somebody you're tired all the time doesn't even come close. But at the same time, they should get that it's a "touchy subject" for PWN sometimes. Sure, some of us can joke about it, but it's only to keep ourselves from going insane with the thought that it will never end.

So don't be embarrassed. You're talking to people who truly do understand.

We get it. Posted Image




Again, well said. You rock. Posted Image

#9 2tired2bNormal

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Posted 23 January 2011 - 11:29 AM

I just seriously need to vent before this eats me up. I get so sick and tired of people (family especially) not getting the whole Narcolepsy thing. You would think the people closest to you would take the greatest interest in it, or make some sort of effort to understand it. NOOOOO.

Case in point. Every morning it is my responsibility to not only get my own narco'd butt out of bed, but then wake up my husband and twin toddlers on time. I have N. and Lupus and am tired and sore and all the fun stuff that goes with that. Now usually I have to nag and nag to get the hubby out of bed at which point he has just enough time to get his own stuff done and out the door leaving me to wrestle two 4-1/2 year olds with no help. This morning one of my sons asked him for something and he said he couldn't do whatever it was because he barely had time to get out the door on time. I made the comment that he needs to get out of bed earlier and do you know what he said to me? "I can't help it, I'm tired.".....WHAT??!!! Do you not know who you're talking to???? REALLY?!! Of course this lead to an arguement because HELLO-DOES HE REALIZE WHO HE'S TALKING TO? I don't get a free pass because I'm tired....EVER. I'm on almost the full dose of Xyrem and who do you think gets up in the middle of the night with the kids....ME! I've gotten holy crap good at functioning while in the midst of a full on Xyrem session. Lord forbid I ask him to go downstairs and take care of something for the kids b/c I've taken my meds...all I hear is complaining all the way down the stairs. I feel like I want to SCREAM.

I even started a narcolepsy blog to give some sort of account of the life of a narcoleptic thinking that maybe family would read it and get it a little more. NOOOOOO. I mentioned to the hubby that I actually have some subscribers on my blog and he says, "you're still doing that?". So much for taking an interest. I'm just so extremely frustrated that I can't get any rest or catch a break here. I do 90% of the housework, the bills, the budget, all the kids school stuff, work a full time job and stay on top of everything else that goes on in the house. I feel very unappreciated and frustrated.


AmazingGracie-
I'm 100% with ya'. I have the EXACT same issue with my Hubby. I agree it's very demeaning and frustrating.
Oh- and God forbid you take 10 minutes of your awake time to actually do something you LIKE to do for once! OK- maybe I shouldn't get going on this subject!
I'm about to come unglued! All I wanna know is...
How do you get them to understand, if they won't research on their own?
Thanks for your post. It makes me feel a bit better that I'm notthe only one who's husband just doesn't get it!
PS. You ARE amazing. And don't EVER forget it!!!! ~Hugs
I'm not trying to demonize my husband-he really is a good guy but I'm extremely frustrated that something that affects my life in so many ways is just brushed off. Thanks for letting me rant everyone...I really needed it.



#10 wisher

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Posted 03 April 2011 - 09:45 PM

I know this is kind of an old post but I wanted to reply and lend my emotional support as well.

I find that I'm becoming more and more frustrated because my family & boyfriend don't seem to want to take my N seriously. My boyfriend is an insomniac and will stay awake all hours of the night sometimes. Then the next day he'll get sleepy and want to take a nap. I suggest that he not take a nap because then that will ensure that he stays awake very late that night, and we (mostly I) have been trying to get him on a more normal sleep schedule. Yet somehow he is just completely unable to stay awake when he wants to take a nap. I feel so frustrated because I'M the one with narcolepsy and I can control my sleep attacks better than he can! What the heck is that? :(