19 replies to this topic

[LaurenChilds]

I am married to the most amazing man... and most days I don't feel like I deserve him. I know I am not lazy, but when I can't do the little things that I want to do for him, it makes me feel so useless. I am tired of apologizing all the time because the laundry didn't get done, and he really tries to be understanding, and he never says anything negative, but I can tell he just doesn't understand. There is always an underlying question of "why dont you work?" uh... I CANT! not only to I have narcolepsy, but I have fibro myalgia as well... I can hardly function at home let alone working. I can't work... and I can't get disability because I am only 22 years old and apparently I haven't worked long enough to get SSI, which frankly I think is a crock! So I feel like I contribute nothing to this marriage at all... Maybe this is too personal to share, but most nights I am too tired to even make love. I am a newly wed... that isn't how it is supposed to be! What kind of a life is this? The meds help me stay conscious... but that still isn't a life. If it's gonna be this crappy I would rather be unconscious for it anyways. well... I am already getting tired... I can't write anymore tonight.

[Ms.Vanna]

Lauren,

I'm sure majority of people with narcolepsy have been in your shoes. I know I have. You are truly blessed to have such a supporting husband, and believe me you he probably understands more than you think. Narcolepsy is definitely a hard disorder to understand, I'm sure fibro myalgia is as well. My last daycare provider had that and what little bit she did explain to me I concluded that it was just as disabling as Narcolepsy if, not worse. (Like I could imagine that) You know history has always judged women by the role that they place in the house. In the 50s' - 60's it was being a homemaker and bearing children and unfortunatley I believe that we as women hold onto to that even today. Fortunately (for us) there's more to being a women than just having babies and cooking. We have a lot more to offer in a family environment and to our spouses. For instance, support, respect, and love. Yeah, what man doesn't enjoy love-making. But, that's not the only thing that keeps a man around. Dr. Laura Schlessinger (Hopefully, I spelled her name right) wrote an excellent book called "The Proper Care and Feeding of a Husband." That book provides a lot of insight not only from a women, and pychologist but, also heartfelt testimonies from coutless men in relationships. You owe it to your husband, and yourself to take the time to read this book. Now I know that may be difficut with your Narcolepsy and all. But, I guarantee that by the end of this book you will have an whold different outlook on your marriage and your worth as a women. And, hang in there. You're still young I got diagnosed with Narcolepsy at I believe 20. And, than Sleep Apnea last year at 30. Yes, the road has been a tad bit bumpy, and extremely tiredsome at times but, I have great faith in God. And, thankfully I've made it through them all.

I am married to the most amazing man... and most days I don't feel like I deserve him. I know I am not lazy, but when I can't do the little things that I want to do for him, it makes me feel so useless. I am tired of apologizing all the time because the laundry didn't get done, and he really tries to be understanding, and he never says anything negative, but I can tell he just doesn't understand. There is always an underlying question of "why dont you work?" uh... I CANT! not only to I have narcolepsy, but I have fibro myalgia as well... I can hardly function at home let alone working. I can't work... and I can't get disability because I am only 22 years old and apparently I haven't worked long enough to get SSI, which frankly I think is a crock! So I feel like I contribute nothing to this marriage at all... Maybe this is too personal to share, but most nights I am too tired to even make love. I am a newly wed... that isn't how it is supposed to be! What kind of a life is this? The meds help me stay conscious... but that still isn't a life. If it's gonna be this crappy I would rather be unconscious for it anyways. well... I am already getting tired... I can't write anymore tonight.

[Russel]

I have the guilt of being a Narcoleptic husband - and I have other health issues.  It seems to be much worse for men.  

I feel and I am treated exactly like a piece of furniture.  There is no love life to complain about.  I've give up all I can give.  I'm not sure what my next move should be.  I have a Dr. Apt. later this month but what can they do to change reality?  Really?

[greatbig47]

I have the guilt of being a Narcoleptic husband - and I have other health issues. It seems to be much worse for men.

I feel and I am treated exactly like a piece of furniture. There is no love life to complain about. I've give up all I can give. I'm not sure what my next move should be. I have a Dr. Apt. later this month but what can they do to change reality? Really?

I think the question is what can YOU change?

No one should ever feel guilty about a health condition.

If your spouse doesn't understand your condition, and shows no hope of ever understanding, maybe you relationship is doing more harm than good? If that's the case, you deserve better. Harsh, I know...but if that is the case, you have choices...Get the life you deserve or continue a life of depression and useless guilt.

And if there's no love in your life to speak of, what have you got to lose?

Kids involved? Great. They can either see Dad as an extra couch that sucks up air, or a Dad that decided to settle for nothing but what he deserves...Understanding people around you that wouldn't DREAM of cutting you down because of your condition.

You are not furniture. N or not, NO one deserves to feel that way. I've been in your position (or at least very simular), and I hope nothing but the bast for you!


Prayers your way...
-Stu

[Henry G]

No one should ever feel guilty about a health condition.

I needed to hear that. It should be a mantra.

[Russel]

The thought of starting over in a new relationahip is more than I can bear.  Things have changes so much since I was on my own 20 years ago.  I can now barely take care of myself so there is no hope of finding that love of my life.  My soul mate will just have to wait.

Besides, when we are young we have all this emotional baggage we drag around with us.  When we get older, some of us have replaced/fixed the emotional stuff with physical stuff.  The physical stuff isn't going to go away, in fact, it just seems to get worse over time.  My hope is that the problem will take care of itself.  Besides, i have no baseline anymore for what normal is.  I really don't know anymore.   That is one reason I started attending the support groups.  I'm trying to find my baseline.  The group helps me a lot.

Thanks to everyone who endures my complaining.  I try to keep it to a minimum.  I really do.

Oh, and thanks for the words of encouragement.  It is appreciated.

Russel

[maggie]

I am married to the most amazing man... and most days I don't feel like I deserve him. I know I am not lazy, but when I can't do the little things that I want to do for him, it makes me feel so useless. I am tired of apologizing all the time because the laundry didn't get done, and he really tries to be understanding, and he never says anything negative, but I can tell he just doesn't understand. There is always an underlying question of "why dont you work?" uh... I CANT! not only to I have narcolepsy, but I have fibro myalgia as well... I can hardly function at home let alone working. I can't work... and I can't get disability because I am only 22 years old and apparently I haven't worked long enough to get SSI, which frankly I think is a crock! So I feel like I contribute nothing to this marriage at all... Maybe this is too personal to share, but most nights I am too tired to even make love. I am a newly wed... that isn't how it is supposed to be! What kind of a life is this? The meds help me stay conscious... but that still isn't a life. If it's gonna be this crappy I would rather be unconscious for it anyways. well... I am already getting tired... I can't write anymore tonight.

Don't give up! Before I was diagnosed with N. I pushed myself to do it all because I was unaware that a condition existed. Now that I know I have this I don't feel guilty about my symptoms, I still push myself but now I know to stop take my Xyrem and go to bed, I call it my "curfew time." I look for something everyday to smile about no mater how small even after losing a great job that I loved. I still work for the school district although in a different capacity, (they can't allow me to drive a school bus anymore). It took many tears and feeling like giving up just to know I have Narcolepsy. The way I choose to look at things is this, "God wouldn't have given me this condition if he thought I couldn't handle it" so handle it I will. Not sure how to go about it yet but it will include my new "personality" and educating people past the "OMG are you going to fall asleep in your soup? or "Oh I feel sorry for you." I have found that people want to know about Narcolepsy but don't want to hear it. I like to "poke fun" at myself because laughter is better than dweling on it. It is a serious condition but we all have a right to research what makes us feel better (even if the books say that what works most people is this...) Changing eating habits, inviting hubby to nap with you, exercise or even screaming from the balcony "I have Narcolepsy and I'm not going to let it beat me!" you just have to find what works for you. My hubby understand but doesn't. Your man knows you think he is amazing now show him how amazing you are. These conditions will only make you stronger (even the fibromyalgia) in mind and spirit and you will be better off for it. That's why we are all different.

Stay positive and good luck to you. Just being newly weds is tough enough don't drag yourself down with things you can't change pull yourself up with things that will change you.

[Ashley]

My husband and I have been married for over 7 years now and i'm pretty sure we're about to split up. My narcolepsy bores him. wtf? he's always seemed supportive too. I feel so bad for feeling guilty about having narcolepsy over the years now that I know he regrets getting stuck with me. Maybe I'm just bitter now but I say screw him if he doesn't let you be who you are. You didn't choose to have it.

p.s Any single narcoleptics in NW Arkansas?

[dogdreams]

my $0.02? yep screw em. I found a guy who's totally patient and understanding because I was picky. So the other jerks I was with can go ... oh I don't know... I suppose my advice isn't family friendly. you get the idea.

[napnow]

Ahhhh yes. The guilt is there. Like right now I feel guilty for reading the board instead of making the bed, doing laundry, vacuuming, dusting, cleaning a bathroom, hanging with the kids, walking the dogs, filing the paperwork, etc. However, I need this place. I am a newbie and I need to know what is going on with me, with others with N, side effects of meds, and support. I know this, and yet the guilt.......

[Irishhh]

Lauren,

I'm sure majority of people with narcolepsy have been in your shoes. I know I have. You are truly blessed to have such a supporting husband, and believe me you he probably understands more than you think. Narcolepsy is definitely a hard disorder to understand, I'm sure fibro myalgia is as well. My last daycare provider had that and what little bit she did explain to me I concluded that it was just as disabling as Narcolepsy if, not worse. (Like I could imagine that) You know history has always judged women by the role that they place in the house. In the 50s' - 60's it was being a homemaker and bearing children and unfortunatley I believe that we as women hold onto to that even today. Fortunately (for us) there's more to being a women than just having babies and cooking. We have a lot more to offer in a family environment and to our spouses. For instance, support, respect, and love. Yeah, what man doesn't enjoy love-making. But, that's not the only thing that keeps a man around. Dr. Laura Schlessinger (Hopefully, I spelled her name right) wrote an excellent book called "The Proper Care and Feeding of a Husband." That book provides a lot of insight not only from a women, and pychologist but, also heartfelt testimonies from coutless men in relationships. You owe it to your husband, and yourself to take the time to read this book. Now I know that may be difficut with your Narcolepsy and all. But, I guarantee that by the end of this book you will have an whold different outlook on your marriage and your worth as a women. And, hang in there. You're still young I got diagnosed with Narcolepsy at I believe 20. And, than Sleep Apnea last year at 30. Yes, the road has been a tad bit bumpy, and extremely tiredsome at times but, I have great faith in God. And, thankfully I've made it through them all.

Whoa whoa whoa. Wait a minute, hold it up. The proper care and feeding of a husband? Maybe I'm stepping out of place by judging a book I've yet to read, but really? REALLY?? And you are saying she "Owes it to her husband" to read this book?

I went ahead and looked up some excerpts from the book... and wow.. okay, I'm a little floored right now.

Maybe I have a different outlook because I am 23, but I'm never going to listen to some woman telling me that I need to accept the fact that my husband/boyfriend/partner has strayed to another because I was too tired or neglectful of his "intimate" needs. Are you kidding me? Seriously? SERIOUSLY??

So what? I should say, oh okay honey, it's fine that you slept with another woman. Yeah, I understand. I was too tired and too far narcoleptic to be with you that night so you found someone else to be with. Um, no.

I have a wonderful guy in my life and even if he doesn't completely understand my Narcolepsy, he tries. He tries, and that is well enough. I can't expect him to understand completely a condition that is not his own, he does the best he can, as well as I. A relationship should not be all about the woman walking around edges and corners to make sure she doesn't upset the man, or offend his masculinity. Both need encouragement. Both need reassurance, blah blah blah. Anyway, if I was too tired to be with my husband in that intimate way every night, he should understand that. and if he strays, then I understand that it is over. I don't blame myself and say that it is okay because it was my fault.

Okay, I'm done here. I'm going to sleep this irritation off.

[Sleepy Diver]

.I'm with ya on the guilty husband thing. I used to really be what I saw as a sucess, and now I feel that I am a shell of the husband I once was and so why should my wife still love me?

Tough stuff to deal with

Greg

[Stacy D]

I think sometimes the "sickness and health" part of the vows gets forgotten. Times are so great when we marry our partners we can't really imagine the bad times and just don't think about it. When I asked myself "can I spend the rest of my life with this person?" I thought about the worst (from my perception). I imagined having to nurse him and decided I would be ok wiping his butt if he couldn't do it himself. THAT is love and dedication. I wouldn't wipe just anyone's butt.

My husband is great. I know he doesn't understand what I am going through, but he doesn't try to like all the other "helpful" people in my life. I know it's hard for him and he gets frustrated, but he has never blamed me or acted like this is something I can help. We have been through a lot together in just 7 short years and it has all made us stronger.

The guilt is all mine. I HATE that I am no longer able to properly take care of my family. We order food more times in a week now than we used to in a whole month. I'm embarrassed at how messy my house is. My kids do not get the attention they need and deserve. I used to be good - good mom, good wife, good soldier. I am an over-achiever and perfectionist so I don't handle personal weakness and failure well.

Irishhh, I'm with ya on the book. I have never agreed with Dr. Laura, a woman who tells other women to stick with their husband no matter what (even in domestic violence), infidelity is the wife's fault, etc., and she herself is divorced. I am neither traditional nor feminist but I do feel that strong women have a large role in taking care of their families. Behind every good man is a better woman! I do most of the domestic stuff because I feel it's my duty, I like things my way, and I take pride in my home and family. I am learning to accept more of my husband's help, even if he does wash my uniforms on the wrong cycle.

[sleepyavon]

I totally relate. My husband left me in April, we have been separated eversince ;(

[runninginsand]

I felt that I just had to reply here... Dr. Laura is *NOT* a psychologist, or therapist, of any kind. She has a radio advice show. Her PhD is in KINESIOLOGY, which is the study of human motion. While I feel that she does dole out some good advice, I feel she is often off base, judgemental, and frequently gives advice that is in direct opposition to what a trained therapist or psychologist would say.

I am extremely lucky to have a supportive husband. I don't seem to be as debilitated by this as many others are, but there are definitely times when I can't do the things I would like to. It is common, from my understanding, to also have depression concurrent with Narcolepsy, which I see in my life and I know contributes to my fatigue level at times. If your spouse left you because of your illness, own that they made the decision not to follow through on their vows, and nothing you did or didn't do would have changed it. Refuse to feel guilty for things that you have no control over. If the house being a mess is really getting to you, enlist the help of friends and family to help clean it up. The people in your life are probably dying to help and are just waiting for the chance! If that isn't feasable, consider hiring a house cleaner, reasonably priced options are available.

My husband and I talked when I was diagnosed, about what it would mean for out future, and we both decided we wanted to stay together. Its not an easy road, but we both take it one day at a time. Hang in there.

[AckDreams]

Meeting other people with Narcolepsy might really help both you and your husband. I found people sort of understood my condition, but when they later met someone else who had the condition they realized just how much more of what I can and cannot due is impacted by my condition than they realized. The more me and my loved ones understood the wide spreading impact of this ailment the easier it was for them and I to blame the illness and not me. We all still have a long way to go but IDing and letting go of guilt because it really serves no purpose, has been a huge step in the right direction for us. If my best friend was blind I wouldn't fault them at all for not accomplishing sight related tasks and I'd try really hard to not make them feel badly about their condition AND I wouldn't tolerate anyone else making my friend feel badly about their condition.... so why should I treat myself any different than I would a best friend? I try hard not to emotionally abuse myself over this and I try not to let anyone else do so. If I'm drowning in guilt and self pity I won't be much fun to be around, besides those negative emotions just exhaust me. I'm tired enough as it is, I owe it to myself and those I love, to give myself a break, do what I can and not beat myself up over what I can't do.

[Perplexed]

Yep yep...feel lots of guilt and feel like I've become a super lame partner because I just sleep all the time. I try to do as much as I can on good days, but on bad days...forget it. Not sure our friends really get it either...but at least my hubby has them to go and do things with so he's not completely lonely. I hate missing out all the time though...

[Sleepless in Ohio]

Hi,
I just turned 50, I have a good job that allows me to adjust my schedule to the "good part of my day" or the time I am most awake. For me that is from about 4:00 am until maybe noon-ish. My problem is my nero/sleep Dr. is so positive, he tells me and my wife that after we find the right meds, I'll sleep at night and be awake during the day. So my wife thinks that is it. I am on my second medication and I should be back to normal by now. I don't think she understands that "normal" is never going to happen.

I feel guilty that the best part of my day is spent at work. When I get home I fall asleep in the chair, and no matter how many pillows she throws at me, I can't wake up.

D

[Niki V.]

I feel really blessed that I have such a supportive husband and daughter. We have been married for 14yrs now and he has been by my side the entire time. We share the housework and duties around the house. Right now I am still able to work full-time, but I don't know how long I will be able to keep up the pace.

He completely understands when I fall asleep on the couch or if I go to bed early becuase I am really tired. We have even changed how we do dinner around our house due to my Narcolepsy. I am at work from 7:30am until after 6pm, Monday-Friday...so dinner around my house is on a fix it yourself basis. We have home cooked dinner only a few nights a week now to help me rest the other nights!!! Our daughter is now old enough that she does her own laundry to help out also.

I am truely blessed and hope that everyone else can receive the same support I have with my family. We all deserve it!!!!!

[sueno]

There are times I feel in isolation because my other half goes to do fun things and I don't have the energy and need to take naps.