Jump to content


Photo

Wife Of A Narcoleptic


  • Please log in to reply
35 replies to this topic

#1 Elizabeth1

Elizabeth1

    Member

  • Members
  • 4 posts
  • Gender:Female
  • Location:NEW YORK
  • Interests:My baby, crafts, reading, and family!

Posted 26 December 2012 - 02:09 PM

I've read the forums. Some just the topic titles. I'm not sure if I will be the most hated person on this forum, but I may come close. I have been with my husband for 10 years. I am 34, he is 38. When we met, he was in a band and we were staying out on the weekends all night, typical "band" stuff, minus the drinks and drugs. Both had full time jobs. He was taking naps here and there but nothing out of the "norm". We were having great sex quite a few times a week. Relationship going well. Moved in together almost 3 years iinto the relationship. Sex a few times a week? Not so much anymore but almost expected for common reasons. He's going to NYU Sleep Center to be part of their sleep study. Tested for sleep apnea, wears the mask for a couple of weeks, stays over the hospital hooked up to machines for testing, does all reflex/memory tests...the whole nine yards. Diagnosed with low grade narcolepsy (2004). Told by his doctor his condition will not worsen, as is the nature of narcolepsy, and prescribes Provigil (in the future is taking Nuvigil as well). We were both relieved! He more than me obviously but it was a huge weight off his shoulders, especially with work. This was great! But now, for me, things start changing. I try to be understanding. As much as I, a non-narcoleptic, can understand at least. For our wedding I make sure the venue has somewhere for him to take a 20-30 minute nap, I schedule our plans (family, birthdays, sports, etc) around his nap schedule. Cook dinner later so that he can nap when he comes in from work and we can eat together. We had a baby. He was absolutely wonderful taking the last feeding late at night (1-2AM) so that I can sleep. He gets home from work before I do so when I get home I take the baby and we go out so that he can nap in peace.

Look, as a spouse of a narcoleptic I am aware of the side effects. The nodding off, the red eyes. I am aware of the constant state of euphoria. I am aware of ITS' difficulty. I am aware that he would "like" to do dinner AND a movie not just one or the other. Cataplexy, restless legs, the nightmares, sleep paralysis, grogginess, not sure what is real or a dream...I got it. I got it all. I get it. But after reading these forums, I feel like I'M the bad guy. Being in this relationship with a narcoleptic is just as hard as being a narcoleptic! What about what the narcoleptic doesn't understand? What are they aware of? Do you know how hard it is for us? Is it really too much to ask that you be as angry as us about IT? I'm not asking you to remain angry but sometimes just not accept IT SO easily! Non-narcoleptics have to change their life too! It's not all about the narcoleptic! Where is my break when I get home from work? Where is my nap when I've been up with the baby since 6:30 AM, taken him with me shopping, done the laundry, made dinner? Do you think I don't know the difference between a narcoleptic necessary nap and...a nap? Look over...you're sleeping. Come home from shopping...sleeping. Folding laundry...sleeping. Dinner...sleeping....movie...sleeping. Could one say "oh you're exagerating becasue he has low grade narcolepsy?" Sure...but this is what it's like for me! One big sleep over!! Sex life? What sex life? Where is the sex life? Is it fair to me that he is content with no sex because he can't muster up enough energy once a week, once a month, every other month?

Don't get me wrong...I am very aware of the fact that I sound like I am attacking ALL narcoleptics. I know that the entire population of narcoleptics is not like this. Maybe I'm just attacking my husband and this is the only outlet I've found. Maybe I'm just angry that I feel like I didn't sign up for this when we got involved. Maybe that's what makes me feel like such a horrible person. Maybe I can't blame him for it all. But maybe I just would like him to feel desire for me and act on it. Maybe that would help ME. Maybe if narcoleptics appreciated what everone else does around them...maybe I don't know!! What I do know is that I'm 34 years old. I have a beautiful baby and a wonderful dog and I have a narcoleptic husband that I have lost touch with in almost every realm of our relationship. Maybe it's the narcolepsy. Maybe it's other things. Maybe it's all of it, including me! But it is crushing certain aspects of our marriage. Important ones. So yes...I hate this condition. I applaud all of you that make IT work, accept IT, move on together. I am jealous. I am envious. I feel utterly defeated. IT has beaten me.

So did I write this here for a reason? A justifiable reason? Did I write it to get help, suggestions, opinions, a friend? Did I write it to bash, vent, offend? Did I write it for understanding, acknowledgement, or to cry? I don't know. I don't feel better and I certainly don't mean to offend or disrespect anyone. I'm tired of looking at his eye lids. I'm tired of his acceptance of IT so easily. I'm tired of being awake...by myself...again. I'm tired of thinking about IT all of the time and talking about IT all of the time. I'm tired of being angry at him for IT. I'm tired.

Thank you for reading this ridiculous rant. Just one person reading this will make me feel better that SOMEONE was awake to read it!! Thank you!

#2 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,290 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 26 December 2012 - 09:09 PM

I've read the forums. Some just the topic titles. I'm not sure if I will be the most hated person on this forum, but I may come close. I have been with my husband for 10 years. I am 34, he is 38. When we met, he was in a band and we were staying out on the weekends all night, typical "band" stuff, minus the drinks and drugs. Both had full time jobs. He was taking naps here and there but nothing out of the "norm". We were having great sex quite a few times a week. Relationship going well. Moved in together almost 3 years iinto the relationship. Sex a few times a week? Not so much anymore but almost expected for common reasons. He's going to NYU Sleep Center to be part of their sleep study. Tested for sleep apnea, wears the mask for a couple of weeks, stays over the hospital hooked up to machines for testing, does all reflex/memory tests...the whole nine yards. Diagnosed with low grade narcolepsy (2004). Told by his doctor his condition will not worsen, as is the nature of narcolepsy, and prescribes Provigil (in the future is taking Nuvigil as well). We were both relieved! He more than me obviously but it was a huge weight off his shoulders, especially with work. This was great! But now, for me, things start changing. I try to be understanding. As much as I, a non-narcoleptic, can understand at least. For our wedding I make sure the venue has somewhere for him to take a 20-30 minute nap, I schedule our plans (family, birthdays, sports, etc) around his nap schedule. Cook dinner later so that he can nap when he comes in from work and we can eat together. We had a baby. He was absolutely wonderful taking the last feeding late at night (1-2AM) so that I can sleep. He gets home from work before I do so when I get home I take the baby and we go out so that he can nap in peace.

Look, as a spouse of a narcoleptic I am aware of the side effects. The nodding off, the red eyes. I am aware of the constant state of euphoria. I am aware of ITS' difficulty. I am aware that he would "like" to do dinner AND a movie not just one or the other. Cataplexy, restless legs, the nightmares, sleep paralysis, grogginess, not sure what is real or a dream...I got it. I got it all. I get it. But after reading these forums, I feel like I'M the bad guy. Being in this relationship with a narcoleptic is just as hard as being a narcoleptic! What about what the narcoleptic doesn't understand? What are they aware of? Do you know how hard it is for us? Is it really too much to ask that you be as angry as us about IT? I'm not asking you to remain angry but sometimes just not accept IT SO easily! Non-narcoleptics have to change their life too! It's not all about the narcoleptic! Where is my break when I get home from work? Where is my nap when I've been up with the baby since 6:30 AM, taken him with me shopping, done the laundry, made dinner? Do you think I don't know the difference between a narcoleptic necessary nap and...a nap? Look over...you're sleeping. Come home from shopping...sleeping. Folding laundry...sleeping. Dinner...sleeping....movie...sleeping. Could one say "oh you're exagerating becasue he has low grade narcolepsy?" Sure...but this is what it's like for me! One big sleep over!! Sex life? What sex life? Where is the sex life? Is it fair to me that he is content with no sex because he can't muster up enough energy once a week, once a month, every other month?

Don't get me wrong...I am very aware of the fact that I sound like I am attacking ALL narcoleptics. I know that the entire population of narcoleptics is not like this. Maybe I'm just attacking my husband and this is the only outlet I've found. Maybe I'm just angry that I feel like I didn't sign up for this when we got involved. Maybe that's what makes me feel like such a horrible person. Maybe I can't blame him for it all. But maybe I just would like him to feel desire for me and act on it. Maybe that would help ME. Maybe if narcoleptics appreciated what everone else does around them...maybe I don't know!! What I do know is that I'm 34 years old. I have a beautiful baby and a wonderful dog and I have a narcoleptic husband that I have lost touch with in almost every realm of our relationship. Maybe it's the narcolepsy. Maybe it's other things. Maybe it's all of it, including me! But it is crushing certain aspects of our marriage. Important ones. So yes...I hate this condition. I applaud all of you that make IT work, accept IT, move on together. I am jealous. I am envious. I feel utterly defeated. IT has beaten me.

So did I write this here for a reason? A justifiable reason? Did I write it to get help, suggestions, opinions, a friend? Did I write it to bash, vent, offend? Did I write it for understanding, acknowledgement, or to cry? I don't know. I don't feel better and I certainly don't mean to offend or disrespect anyone. I'm tired of looking at his eye lids. I'm tired of his acceptance of IT so easily. I'm tired of being awake...by myself...again. I'm tired of thinking about IT all of the time and talking about IT all of the time. I'm tired of being angry at him for IT. I'm tired.

Thank you for reading this ridiculous rant. Just one person reading this will make me feel better that SOMEONE was awake to read it!! Thank you!

I'm not mad, just hurt. On top of all the primary symptoms of N, I can assure you one of the major secondary symptoms is guilt, largest of which being guilt over how we fail our friends and family. I have zero control over my condition, yet everyday I berate myself for my failings. So I don't think we need your help doing that. We have it covered. Sorry your husband's misery is inconvenient for you. I'm willing to bet he finds it more than a teensy bit upsetting as well.

#3 Hank

Hank

    Member

  • Members
  • 1,310 posts
  • Gender:Male

Posted 26 December 2012 - 10:44 PM

I've read the forums. Some just the topic titles. I'm not sure if I will be the most hated person on this forum, but I may come close. I have been with my husband for 10 years. I am 34, he is 38. When we met, he was in a band and we were staying out on the weekends all night, typical "band" stuff, minus the drinks and drugs. Both had full time jobs. He was taking naps here and there but nothing out of the "norm". We were having great sex quite a few times a week. Relationship going well. Moved in together almost 3 years iinto the relationship. Sex a few times a week? Not so much anymore but almost expected for common reasons. He's going to NYU Sleep Center to be part of their sleep study. Tested for sleep apnea, wears the mask for a couple of weeks, stays over the hospital hooked up to machines for testing, does all reflex/memory tests...the whole nine yards. Diagnosed with low grade narcolepsy (2004). Told by his doctor his condition will not worsen, as is the nature of narcolepsy, and prescribes Provigil (in the future is taking Nuvigil as well). We were both relieved! He more than me obviously but it was a huge weight off his shoulders, especially with work. This was great! But now, for me, things start changing. I try to be understanding. As much as I, a non-narcoleptic, can understand at least. For our wedding I make sure the venue has somewhere for him to take a 20-30 minute nap, I schedule our plans (family, birthdays, sports, etc) around his nap schedule. Cook dinner later so that he can nap when he comes in from work and we can eat together. We had a baby. He was absolutely wonderful taking the last feeding late at night (1-2AM) so that I can sleep. He gets home from work before I do so when I get home I take the baby and we go out so that he can nap in peace.

Look, as a spouse of a narcoleptic I am aware of the side effects. The nodding off, the red eyes. I am aware of the constant state of euphoria. I am aware of ITS' difficulty. I am aware that he would "like" to do dinner AND a movie not just one or the other. Cataplexy, restless legs, the nightmares, sleep paralysis, grogginess, not sure what is real or a dream...I got it. I got it all. I get it. But after reading these forums, I feel like I'M the bad guy. Being in this relationship with a narcoleptic is just as hard as being a narcoleptic! What about what the narcoleptic doesn't understand? What are they aware of? Do you know how hard it is for us? Is it really too much to ask that you be as angry as us about IT? I'm not asking you to remain angry but sometimes just not accept IT SO easily! Non-narcoleptics have to change their life too! It's not all about the narcoleptic! Where is my break when I get home from work? Where is my nap when I've been up with the baby since 6:30 AM, taken him with me shopping, done the laundry, made dinner? Do you think I don't know the difference between a narcoleptic necessary nap and...a nap? Look over...you're sleeping. Come home from shopping...sleeping. Folding laundry...sleeping. Dinner...sleeping....movie...sleeping. Could one say "oh you're exagerating becasue he has low grade narcolepsy?" Sure...but this is what it's like for me! One big sleep over!! Sex life? What sex life? Where is the sex life? Is it fair to me that he is content with no sex because he can't muster up enough energy once a week, once a month, every other month?

Don't get me wrong...I am very aware of the fact that I sound like I am attacking ALL narcoleptics. I know that the entire population of narcoleptics is not like this. Maybe I'm just attacking my husband and this is the only outlet I've found. Maybe I'm just angry that I feel like I didn't sign up for this when we got involved. Maybe that's what makes me feel like such a horrible person. Maybe I can't blame him for it all. But maybe I just would like him to feel desire for me and act on it. Maybe that would help ME. Maybe if narcoleptics appreciated what everone else does around them...maybe I don't know!! What I do know is that I'm 34 years old. I have a beautiful baby and a wonderful dog and I have a narcoleptic husband that I have lost touch with in almost every realm of our relationship. Maybe it's the narcolepsy. Maybe it's other things. Maybe it's all of it, including me! But it is crushing certain aspects of our marriage. Important ones. So yes...I hate this condition. I applaud all of you that make IT work, accept IT, move on together. I am jealous. I am envious. I feel utterly defeated. IT has beaten me.

So did I write this here for a reason? A justifiable reason? Did I write it to get help, suggestions, opinions, a friend? Did I write it to bash, vent, offend? Did I write it for understanding, acknowledgement, or to cry? I don't know. I don't feel better and I certainly don't mean to offend or disrespect anyone. I'm tired of looking at his eye lids. I'm tired of his acceptance of IT so easily. I'm tired of being awake...by myself...again. I'm tired of thinking about IT all of the time and talking about IT all of the time. I'm tired of being angry at him for IT. I'm tired.

Thank you for reading this ridiculous rant. Just one person reading this will make me feel better that SOMEONE was awake to read it!! Thank you!


I think your comments are honest. I am a husband and father of three children. I only recently found out I have Narcolepsy. I have never received, requested or required the level of assistance and support you have offered your husband. I sure could have used it though. When we had twins, I was up for every feeding to help. I also fell asleep at a stop lights and almost destroyed my body from pushing myself so hard. I did not know my diagosis. If I had known, I would have been more careful ith myself. It is amazing to me that I never crashed during my long commute home. So many evenings I did not remember so much of the drive. I would never have taken those risks if I had known the severity of what I was living with.

So, I would say, you have done a lot to support and accommodate your husband. You are also in a marriage- you are a wife. If you have needs and wants, find a way to have them met. Do understand, of course, that your husband needs to care for himself as well. With both of you looking out for each other and also taking care of your selves, you can do this. Counselling can be a huge plus- together or for yourself. Marriage is no place for a guilt trip from either one of you. This is a lot to deal with and there is no shame in asking for and receiving help and support to move forward.

#4 Elizabeth1

Elizabeth1

    Member

  • Members
  • 4 posts
  • Gender:Female
  • Location:NEW YORK
  • Interests:My baby, crafts, reading, and family!

Posted 27 December 2012 - 01:54 PM

I'm not mad, just hurt. On top of all the primary symptoms of N, I can assure you one of the major secondary symptoms is guilt, largest of which being guilt over how we fail our friends and family. I have zero control over my condition, yet everyday I berate myself for my failings. So I don't think we need your help doing that. We have it covered. Sorry your husband's misery is inconvenient for you. I'm willing to bet he finds it more than a teensy bit upsetting as well.

As I stated numerous times, I'm not interested in attacking narcoleptic's. And I am well aware of feelings of guilt as I feel I eluded to. From what I have read here and what I have learned from my husband, narcoleptic's as a whole aren't miserable. Obviously you are. Being married to a narcoleptic IS inconvenient. So is being married to a stripper, a librarian, a stock broker, an unemployed musician who smokes pot all day and likes to play video games. Inconvenience is relative. He could feel it's inconvenient to be married to me! The truth is you do need help. We all need help. I'm not interested in fighting a battle with you or anyone else about what I feel about my husband and his condition. I get enough at home. I just wanted people to be aware of how I feel. How I look at things. While I try to understand all of the inconveniences (and perks) of living and dealing with a husband that has narcolepsy, I would like people to understand what I take on because of it. It has nothing to do with trying to make him feel guilty. It's just wanting him to understand what I'm going through as I try to understand what he is going through. Thank you for your educated, intelligent, and helpful comments. I know there is no cure for narcolepsy but for your sake, I hope you can cure your misery.

#5 Elizabeth1

Elizabeth1

    Member

  • Members
  • 4 posts
  • Gender:Female
  • Location:NEW YORK
  • Interests:My baby, crafts, reading, and family!

Posted 27 December 2012 - 02:02 PM

I think your comments are honest. I am a husband and father of three children. I only recently found out I have Narcolepsy. I have never received, requested or required the level of assistance and support you have offered your husband. I sure could have used it though. When we had twins, I was up for every feeding to help. I also fell asleep at a stop lights and almost destroyed my body from pushing myself so hard. I did not know my diagosis. If I had known, I would have been more careful ith myself. It is amazing to me that I never crashed during my long commute home. So many evenings I did not remember so much of the drive. I would never have taken those risks if I had known the severity of what I was living with.

So, I would say, you have done a lot to support and accommodate your husband. You are also in a marriage- you are a wife. If you have needs and wants, find a way to have them met. Do understand, of course, that your husband needs to care for himself as well. With both of you looking out for each other and also taking care of your selves, you can do this. Counselling can be a huge plus- together or for yourself. Marriage is no place for a guilt trip from either one of you. This is a lot to deal with and there is no shame in asking for and receiving help and support to move forward.

Thank you for your thoughts. I do appreciate them! I have thought about talking to someone. Maybe just for myself at first. It is a lot to take on and he has been wonderful with the baby. I'm not looking for a medal, although I do appreciate your praise, I just want to actually LIVE with this instead of it being an ISSUE. It's so hard to get diagnosed and it's a grueling process especially when no one wants to put the title to it. It can be very frustrating and it is very time consuming. Once you get that diagnosis there are so many questions that are answered automatically! There are many conversations he doesn't remember having while standing talking to his boss! He sometimes won't know if it's day or night! Thanks again for your suggestions and support!

#6 Elizabeth1

Elizabeth1

    Member

  • Members
  • 4 posts
  • Gender:Female
  • Location:NEW YORK
  • Interests:My baby, crafts, reading, and family!

Posted 27 December 2012 - 02:13 PM

Being in a relationship with a partner with any type of mental or physical health condition can be frustrating at times. It is part of the for better or for worse vows. Hank offered some great advice, which is that counseling is a great option for bringing these frustrations to light and addressing concerns that both partners have in a way that can benefit the relationship. Your frustrations are legitimate. You have a right to have them and it doesn't make you a bad person. My partner often has the same frustrations; the diminishing of our sex life, the planning of dinner or a movie, the fact that I have never seen his band play a show because I can't stay up that late. He expresses these frustrations to me appropriately and I acknowledge and validate his concerns. I also have frustrations in our relationship; I always do the laundry, I have to nag him to complete chores, and I feel guilty about having little sex drive. We discuss ways we can resolve these frustrations and move our relationship forward.

Granted, we do not have children. I often worry about how I would be able to manage raising a child with narcolepsy, especially because I would not be able to wake up in the middle of the night.

My partner and I were friends before we started our relationship. When I was diagnosed, he was very supportive as a friend and understanding. As a partner, he has been patient and kind and always willing to help me in any way possible. I am incredibly grateful for his love and support and I know it is not always easy. I find ways to show him how appreciative I am of him and all he does for me.

When we were doing the genetic testing for the baby, he wanted so badly to find out if there was a possibility that the baby would be a narcoleptic. To be honest, I never thought about it! I wasn't concerned. Believe it or not his having narcolepsy helped tremendously with the baby. Because he can micro sleep, him and the baby shared sleeping habits! I hate that you worry...you'd be surprised with what you can do and handle...even with narcolepsy. Everyone finds a way! Thanks so much for talking to me...and that man of yours sounds like a superb catch!!

#7 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,290 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 02 January 2013 - 02:51 PM

As I stated numerous times, I'm not interested in attacking narcoleptic's. And I am well aware of feelings of guilt as I feel I eluded to. From what I have read here and what I have learned from my husband, narcoleptic's as a whole aren't miserable. Obviously you are. Being married to a narcoleptic IS inconvenient. So is being married to a stripper, a librarian, a stock broker, an unemployed musician who smokes pot all day and likes to play video games. Inconvenience is relative. He could feel it's inconvenient to be married to me! The truth is you do need help. We all need help. I'm not interested in fighting a battle with you or anyone else about what I feel about my husband and his condition. I get enough at home. I just wanted people to be aware of how I feel. How I look at things. While I try to understand all of the inconveniences (and perks) of living and dealing with a husband that has narcolepsy, I would like people to understand what I take on because of it. It has nothing to do with trying to make him feel guilty. It's just wanting him to understand what I'm going through as I try to understand what he is going through. Thank you for your educated, intelligent, and helpful comments. I know there is no cure for narcolepsy but for your sake, I hope you can cure your misery.


Okay, apparently I misread the tone of your post, my apologies. I'm just really sensitive about such things. I think chronic fatigue conditions can multiply so called "character defects." I have always tended not to be lazy, per se, but to only put forth a mediocre amount effort. Partially because I was always so brilliant that I could still dazzle without trying too hard. Now that mediocre effort is incredibly difficult, I do have to watch myself to not completely check out and just not try. So, it sounds like to me perhaps he had slight flaws, which like a crack in a dam, begin to widen and show themselves when put under the stress of illness. I honestly don't know what to tell you. On the one hand I sympathize with him and don't want to throw stones from my glass house. But you still have certain rights and expectations, regardless of how pitiable your husband's situation is. As far as the sex thing goes, the chronic fatigue can sap libido, and so can certain meds used to treat N, particularly SSRIs. They are so effective, sometimes they are used for treatment in sex offenders. Also, you might have his testosterone level checked. I had the level of an athletic female or a nearly dead male when they checked mine. N can do all sorts of crazy stuff to hormones. And this goes without saying, but be sure to freely communicate. If something bugs you, tell him. If he won't listen, find someone he looks up to help mediate the problem. Good luck. Sorry I went all emo on you.

#8 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,290 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 02 January 2013 - 02:55 PM

Does this sound like what your husband could be going through? Alexithymia

#9 ArgentBadger

ArgentBadger

    Member

  • Members
  • 2 posts

Posted 21 January 2013 - 02:45 PM

I too, am the wife of a narcoleptic.  I had less knowledge of what I was getting into when I married him-- but we all know how the vows go-- for richer for poorer, in sickness and in health.  But I completely understand your anger, your frustration, when do *I* get ..... well, much of anything.  The sense that sometimes it IS  worse, harder ..... for us as spouses.

 

Here's my story-- about 11 years ago when I was going through a divorce two friends introduced me to this FANTASTIC guy-- about a year older than me (something I was definitely looking for because the death of my first marriage was primarily caused by the 9 yr age gap and the fact that we were of different religions) who was a single dad of two, working full-time, going to school full time for his master's degree, driving from the city he lived in to where I lived about twice a month. He and I shared many interests, and what he didn't know about me he was fascinated by, he'd listen to me talk, he'd learn and talk to me intelligently. He didn't laugh at me even when what I said seemed farfetched or bizarre.

 

So, things went as things go-- and finally he moved to where I live. Then we moved in together, then we had a baby, then we got married. We have a crazy life-- our household is currently 10 people. Him, me -- his son and daughter from his first marriage his daughter's son. My son and two daughters from my first marriage our son and then his ex-wife's sister's son (ex-nephew-in-law?) was about to be living on the streets alone at 16, so he came to live with us too. My husband still works full-time. I am a stay-at-home mom. Except for the grandson, the kids aren't super-little anymore. The nephew is 21, hubby's son is 20, daughter is 17. My kids from my first marriage are 16,  14 and 12. Our "baby" is 9.  Hubby was diagnosed with narcolepsy about 5 years ago. But, like most, diagnosis was a long time coming, he probably started having the first symptoms about 18-20 years ago. They were masked by having newborns, then by his divorce, then by school and work and everything.

 

90% of the time our marriage is content to happy. Not flawless, but what relationship is. 10% of the time I don't know why I stay. I get sooooo tired of doing all the work. I cry because he tells me about these great moments at work when the meds first kick in where he's WIDE awake and fully functional-- and I feel so cheated that I NEVER see those moments. Not on weekends or during breaks. I get so tired of being angry and then having to explain to him that I'm not attacking him, its not all his fault. Because when you are angry and frustrated and tired you don't want to have to also be reasonable and affirming and supportive.

 

One of the things I am looking for in joining this site-- which my husband also uses btw-- is people -- spouses, children, parents, friends of narcoleptics who understand what I mean without me having to spend hours typing and explaining what narcolepsy IS, what it really means. Its not to bash my husband or to look for an excuse or permission to leave him. Its not because I want someone to say "yeah your life is hard"-- Bashing anyone is never helpful or at least not for very long. If  I need an excuse to leave I can come up with 20, and if I need permission that isn't difficult to obtain either. Between friends and family I can also get 20 people to tell me my life is hard. But having other people who really know what KIND of hard,   who don't have an medical page or a website or some other explanation of what narcolepsy means, or worse some misperception given by the media or a tv show or whatever. Real people who really LIVE with narcolepsy every single day.



#10 lkl

lkl

    Member

  • Members
  • 61 posts
  • Gender:Female

Posted 22 January 2013 - 02:30 AM

I have a question, what can we (as PWN or related conditions) do, so we don't make things hard for other people?

 

Lately, I have been feeling particularly isolated from the people in my world. Like no one really wants to talk to me or do anything with me, because maybe it is too much trouble, or others feel I am expecting too much, when I am not really expecting anything, other than some company or to start trying to do things that aren't working or sleeping. While I admit that a lot of these feeling may just be in my head; honest comments like this suggest that maybe I am not completely making them up either.

 

Thanks



#11 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,290 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 22 January 2013 - 12:46 PM

LKL, I have felt isolated from my friends at times too. I think part of it is my perception and feeling sort of dissociative a lot of the time. But I think also, a lot of times we become less fun or even maybe a bit of a downer to hang around, so people dont want as much to do with us. The best thing to do is just try to act energetic and also don't bring up the N that much. I think Narcolepsy has the habit of turning us into a buzzkill.



#12 ArgentBadger

ArgentBadger

    Member

  • Members
  • 2 posts

Posted 22 January 2013 - 03:21 PM

At least from my perspective-- my hubby tries to make sure that he is going to be at his medicated best when we are going to go out with friends or to a friends' house or whatever. He works really hard to ensure that he is interactive-- because at least for him in large groups its easy for the noise to just done out and he dozes off.  But like anyone with chronic conditions, no one wants to talk about your condition(s) and meds and side-effects all the time. Just like I don't want to listen to my grandmother tell me about her list of aches and pains, and I don't want to listen to my sister-in-law update me on the minute details of week 20 of her pregnancy. Don't let N be everything you are about, the only thing in your life.Of course, if someone else brings it up then go ahead! We do care-- and especially if you have some significant change--  a new med or something good to share. I hope that helps a little at least.



#13 lkl

lkl

    Member

  • Members
  • 61 posts
  • Gender:Female

Posted 23 January 2013 - 04:25 AM

Thanks for your replies. I do try not to talk about it too much. I accidentally brought it up in-directly when my friend was telling me about something that was 40 minutes drive away, and I said that I couldn't drive that far on my own. A lot of the time I feel like sleepiness is consuming me so much, that at times I struggle to find other things to talk about, so try and keep the focus of the conversation away from me.

 

I have no real answers yet to my sleepiness. The past almost 12 months, my current sleep specialist keeps telling me he thinks I have narcolepsy, but isn't sure,as I didn't sleep enough to count on the MSLT. I really only had micro-sleeps. He keeps ruling other things out, and there is just some much waiting in between every step.  I am seeing a third sleep specialist next week.



#14 CATxi

CATxi

    Member

  • Members
  • 18 posts

Posted 31 January 2013 - 09:34 AM

I've read the forums. Some just the topic titles. I'm not sure if I will be the most hated person on this forum, but I may come close. I have been with my husband for 10 years. I am 34, he is 38. When we met, he was in a band and we were staying out on the weekends all night, typical "band" stuff, minus the drinks and drugs. Both had full time jobs. He was taking naps here and there but nothing out of the "norm". We were having great sex quite a few times a week. Relationship going well. Moved in together almost 3 years iinto the relationship. Sex a few times a week? Not so much anymore but almost expected for common reasons. He's going to NYU Sleep Center to be part of their sleep study. Tested for sleep apnea, wears the mask for a couple of weeks, stays over the hospital hooked up to machines for testing, does all reflex/memory tests...the whole nine yards. Diagnosed with low grade narcolepsy (2004). Told by his doctor his condition will not worsen, as is the nature of narcolepsy, and prescribes Provigil (in the future is taking Nuvigil as well). We were both relieved! He more than me obviously but it was a huge weight off his shoulders, especially with work. This was great! But now, for me, things start changing. I try to be understanding. As much as I, a non-narcoleptic, can understand at least. For our wedding I make sure the venue has somewhere for him to take a 20-30 minute nap, I schedule our plans (family, birthdays, sports, etc) around his nap schedule. Cook dinner later so that he can nap when he comes in from work and we can eat together. We had a baby. He was absolutely wonderful taking the last feeding late at night (1-2AM) so that I can sleep. He gets home from work before I do so when I get home I take the baby and we go out so that he can nap in peace.

Look, as a spouse of a narcoleptic I am aware of the side effects. The nodding off, the red eyes. I am aware of the constant state of euphoria. I am aware of ITS' difficulty. I am aware that he would "like" to do dinner AND a movie not just one or the other. Cataplexy, restless legs, the nightmares, sleep paralysis, grogginess, not sure what is real or a dream...I got it. I got it all. I get it. But after reading these forums, I feel like I'M the bad guy. Being in this relationship with a narcoleptic is just as hard as being a narcoleptic! What about what the narcoleptic doesn't understand? What are they aware of? Do you know how hard it is for us? Is it really too much to ask that you be as angry as us about IT? I'm not asking you to remain angry but sometimes just not accept IT SO easily! Non-narcoleptics have to change their life too! It's not all about the narcoleptic! Where is my break when I get home from work? Where is my nap when I've been up with the baby since 6:30 AM, taken him with me shopping, done the laundry, made dinner? Do you think I don't know the difference between a narcoleptic necessary nap and...a nap? Look over...you're sleeping. Come home from shopping...sleeping. Folding laundry...sleeping. Dinner...sleeping....movie...sleeping. Could one say "oh you're exagerating becasue he has low grade narcolepsy?" Sure...but this is what it's like for me! One big sleep over!! Sex life? What sex life? Where is the sex life? Is it fair to me that he is content with no sex because he can't muster up enough energy once a week, once a month, every other month?

Don't get me wrong...I am very aware of the fact that I sound like I am attacking ALL narcoleptics. I know that the entire population of narcoleptics is not like this. Maybe I'm just attacking my husband and this is the only outlet I've found. Maybe I'm just angry that I feel like I didn't sign up for this when we got involved. Maybe that's what makes me feel like such a horrible person. Maybe I can't blame him for it all. But maybe I just would like him to feel desire for me and act on it. Maybe that would help ME. Maybe if narcoleptics appreciated what everone else does around them...maybe I don't know!! What I do know is that I'm 34 years old. I have a beautiful baby and a wonderful dog and I have a narcoleptic husband that I have lost touch with in almost every realm of our relationship. Maybe it's the narcolepsy. Maybe it's other things. Maybe it's all of it, including me! But it is crushing certain aspects of our marriage. Important ones. So yes...I hate this condition. I applaud all of you that make IT work, accept IT, move on together. I am jealous. I am envious. I feel utterly defeated. IT has beaten me.

So did I write this here for a reason? A justifiable reason? Did I write it to get help, suggestions, opinions, a friend? Did I write it to bash, vent, offend? Did I write it for understanding, acknowledgement, or to cry? I don't know. I don't feel better and I certainly don't mean to offend or disrespect anyone. I'm tired of looking at his eye lids. I'm tired of his acceptance of IT so easily. I'm tired of being awake...by myself...again. I'm tired of thinking about IT all of the time and talking about IT all of the time. I'm tired of being angry at him for IT. I'm tired.

Thank you for reading this ridiculous rant. Just one person reading this will make me feel better that SOMEONE was awake to read it!! Thank you!

 

i was diagnosed last year. i noticed my husband acting strange about it all, but i really didnt think about what its doing to him. the way i saw it was "this is happening to me you should support me and you shouldnt be upset. you dont understand" ive never said that to him of course, atleast not in those words. i also never really thought about what it could be like for him until i read this. thank you.



#15 ApparentlyNarcoleptic

ApparentlyNarcoleptic

    Member

  • Members
  • 31 posts
  • Gender:Female
  • Location:Brooklyn, NY

Posted 30 July 2013 - 12:06 PM

I'm so glad you started this thread - even though I'm reading it much later!  I was just diagnosed NwC in May - my fiance is actually the only one who really noticed the cataplexy (I'm still not always aware when it happens).  Other than that contribution and his being opinionated about my meds, he has been extremely unsupportive  and I'm feeling quite frustrated with him.  My sleep dr tried me on nuvigil 3 times - all with disastrous effects - and weeks after I'd been off them he got very snotty with me and said he doesn't like me on these meds... when I wasn't on them and they were out of my system...  He has no sympathy or understanding of what I'm going through, and I can't seem to talk to him about it.  It almost seems to me that he acknowledged it at first and then just filed it away to the list of things that are wrong with me.  I feel like he is disregarding the fact that I have to change my eating and sleeping times to accommodate taking xyrem.  I've explained to him that if he wakes me too early in the midst of being on xyrem I feel hungover and even more awful all day than I already do - and he just writes me off.  I didn't have to be awake until 9am today, yet I've been up since 6:30am because he didn't wake up for his alarms.  In fact, he didn't wake up until I WOKE HIM UP at 7:45am.  I'M SO FRUSTRATED WITH HIM!  It's all made worse by the fact that I do all of the shopping, cooking, cleaning, errands, laundry, etc etc etc AND I rescued a kitten June 30th that I was going to give away, but we kept her because HE wanted to (we already have two cats, one who has a hyperthyroid - who I also take care of) so there was a lot of work involved in vet visits, pet shopping, and acclimating all of the cats to live together and I DID ALL THE WORK AGAIN.  I don't know what to say or what to do.  I don't know how to get through to him.  I'm the one with narcolepsy, and I'm still trying to figure it out for myself and come to terms with it.  I'm living on coffee and doing all the work for our home and our family... Oh, and we're getting married in October and I'm dealing with 95% of that stuff by myself too (not by choice either - I didn't want the whole big wedding thing.  I wanted to do a small ceremony with the parents, siblings, and maybe best friends).  I was glad to read the threads here so I now realize what I need to be aware of going forward.  I too experience the guilt and social life issues (some of which are because I stopped going out because any money I have gets saved for the wedding instead of spent on a night out with friends).  I still haven't told everyone about my N - only our parents and a few friends know.  I'm sorry this is so long and I'm rambling... I'M GOING OUT OF MY MIND AND DON'T KNOW HOW TO DEAL WITH HIM!  Every time I try to talk to him about this I get nowhere.  Anyone have any advice?  Maybe resources I can share with him?  Anything???  Spouses of PwN - how did you come to terms with the situation?



#16 Ferret

Ferret

    Member

  • Members
  • 794 posts
  • Gender:Female

Posted 30 July 2013 - 10:56 PM

I read the above post at 1 p.m....and I still feel the same way at 10:30 p.m. So here goes...
Your fiancé sounds like my first husband and I divorced him and that was way before N with C came into play. It's a PARTNERSHIP! And it doesn't work without effort and sacrifice from both sides.
What goes around comes around. My hubby has been very supportive of me as a PWN...and I have been equally supportive of him through two hip replacements, artificial artery bypass in the femoral arteries of both legs, two hernia operations, gall bladder surgery and a malignant tumour removal from the small intestine.
We take care of each other...that's what love is...32 years and counting.

#17 Hank

Hank

    Member

  • Members
  • 1,310 posts
  • Gender:Male

Posted 31 July 2013 - 07:49 AM

If he is failing at Fiance, why are you promoting him to Husband.

Consider postponing the wedding while getting some couples and individual counseling. Any lost deposits will be minor when compared to the emotional and financial expense of a divorce. Whatever you have now, you will have more of - year after year after year after year after year- until one of you dies or you divorce.

You cannot make him be supportive. You cannot make him be responsible. You cannot make him care. You cannot make him interested. If he wanted to be and do those things, he already would have. If he does not take care of a kitten, good luck with a child.

I say these things as a husband who loves and supports my wife of 15 years and the father of three children. Marriage is not for sissies. It sounds like you are preparing to marry a boy not a man- if he hasn't matured by now, he's not going to.

So, if you marry him at least you know what you are getting. Please, in that case, do both of you a favor and don't complain about him- you will have known who he was. If your fiance is an emotional "boy" instead of a man, that says something about him. If you marry an emotional "boy" instead of a man, that says something about you.

Narcolepsy will become a minor part of your future together.

#18 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,290 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 31 July 2013 - 09:49 AM

I'm sure it's tough, but Hank maybe right. It might be time to push the pause button. Maybe you'll get lucky and that will be enough to be a wake up call for him, and he'll stop acting like a turd. Spouses are supposed to support each other, but right now it sounds as though he's giving you all the support of a quivering tower of jello.



#19 Hank

Hank

    Member

  • Members
  • 1,310 posts
  • Gender:Male

Posted 31 July 2013 - 11:11 AM

Ouch- I just re-read that and it sounds a bit stern. Please take it in the same tone as a coach who cares about his team before a big game. I would say the same thing to my daughters.

#20 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,290 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 31 July 2013 - 11:39 AM

I was thinking, dang Hank doesn't mince words. :o