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#1 Lovemyhusband

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Posted 20 May 2008 - 02:37 PM

I just wanted to check in with all of the pwon supporting a loved one. Anyone in need of sharing?

I have been having a hard time lately keeping track of all the new things popping up on us. I don't know if they are new symptoms or just things I am used to seeing Andre do? It's a challenge these days for me, I can't even imagine how Andre is feeling (he's not big on sharing these days).

Anyway I am here if any of you want to vent or just talk.

#2 bagpuss

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Posted 22 May 2008 - 01:38 AM

YOU ARE GREAT rolleyes.gif AND SO STRONG.YES ITS HARD BEING THE ONE WITH NARCOLEPSY BUT I THINK ITS A LOT HARDER FOR THE OTHER HALFS(IF YOU KNOW WHAT I MEAN)PEOPLE ALWAYS ASK HOW I AM AND HOW IM DOING.NOBODY EVER ASKED HOW MY OTHER HALF WAS AND HOW HE WAS COPING WITH MY MOOD SWINGS,MY E.D.S .ME BLAMING EVERYTHING ON HIM .NOT WANTIN TO SLEEP AND GO TO BED WITH HIM (IN CASE I WOKE HIM UP)THE LIST GOES ON .I SHUT DOWN AS I THOUGHT IF I DIDNT TALK ABOUT NARCOLEPSY IT WAS GIVING HIM A REST FROM IT SOUNDS DAFT I KNOW AND I WOUNDER WHY THE LOVE OF MY LIFE IS NOW MY EX........BIG HUG . HERE IF YOU NEED ME.....XX

#3 Lovemyhusband

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Posted 22 May 2008 - 06:37 PM

QUOTE (bagpuss @ May 22 2008, 02:38 AM) <{POST_SNAPBACK}>
YOU ARE GREAT rolleyes.gif AND SO STRONG.YES ITS HARD BEING THE ONE WITH NARCOLEPSY BUT I THINK ITS A LOT HARDER FOR THE OTHER HALFS(IF YOU KNOW WHAT I MEAN)PEOPLE ALWAYS ASK HOW I AM AND HOW IM DOING.NOBODY EVER ASKED HOW MY OTHER HALF WAS AND HOW HE WAS COPING WITH MY MOOD SWINGS,MY E.D.S .ME BLAMING EVERYTHING ON HIM .NOT WANTIN TO SLEEP AND GO TO BED WITH HIM (IN CASE I WOKE HIM UP)THE LIST GOES ON .I SHUT DOWN AS I THOUGHT IF I DIDNT TALK ABOUT NARCOLEPSY IT WAS GIVING HIM A REST FROM IT SOUNDS DAFT I KNOW AND I WOUNDER WHY THE LOVE OF MY LIFE IS NOW MY EX........BIG HUG . HERE IF YOU NEED ME.....XX


Thanks for the kind words and understanding. For the most part I can take whatever he dishes out because I know it's mostly out of frustration. But those rare days come by and hit me right between the eyes angry.gif .

I often tell him he will have to do a lot worse to get me to leave. When I said "till death to us part" I meant it (even if he dies by my hands rolleyes.gif laugh.gif )

Your support means a lot to me, so thanks again.

#4 Lovemyhusband

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Posted 06 August 2008 - 07:23 PM

I just wanted to post on this family thread again. I can't be the only one here supporting a loved one....can I?

Anyway things are going good for us these days. Summer is here and the kids are keeping us busy with all the things they would like to cram in before school starts.

I hope you all are doing well. Stop in and let us know how you are.

#5 GFofSleepyBF

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Posted 28 April 2009 - 01:45 AM

QUOTE (Lovemyhusband @ Aug 7 2008, 10:23 AM) <{POST_SNAPBACK}>
I just wanted to post on this family thread again. I can't be the only one here supporting a loved one....can I?

Anyway things are going good for us these days. Summer is here and the kids are keeping us busy with all the things they would like to cram in before school starts.

I hope you all are doing well. Stop in and let us know how you are.


Hi there

this is my first post...

My partner of 4 years has narcolepsy, and he has been diagnosed for around 10 years. I knew he had it when I first met him, and fell i love with him. The last few years have been extremely tough as I don;t really know how to cope with it sometimes.

He doesnt work, I work full time. He is on disability pension, but it's just no enough for us to live. He gets very very moody, blames me for things, but when he is feeling better, he is wonderful. I go with him to all his appointments, make sure he takes all his meds, have helped him get into some kind of a sleep routine.

Some days I just think of leaving cos I can't deal with it, and feel very alone...though I know I wont leave as I love him too much. How does everyone here cope with a long term N partner? Can I do this for a lifetime???

Sorry for the rant sad.gif

#6 ohiolor

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Posted 28 April 2009 - 09:00 AM



Hi GF and welcome to the boards!

My husband has N and we've been together for nearly 25 years. He was diagnosed perhaps 10 years ago. As you have found out, it isn't always easy to live in a Narcolepsy partnership, but then again, no relationship is without it's problems....at least we know what we are facing (more or less). You sound like you really care about and love your guy.....that's key. I've met lots of folks that are able to make their relationships work...and then some that have not. For myself, I have found that when I really need him to have it together, he does (like my daughters wedding). He can go several days without naps etc, but then I know the "crash" is coming and I give him all the time he needs to get himself "normal" again. My hubby doesn't have C so we mostly just deal with the EDS. Reading these boards is really helpful to me. I've been able to learn more about how N affects others, therefore, I understand my husband much better. Feel free to drop in with any questions you may have and I'll do my best to help you out. If you and your BF are able to swing it, the Narcolepsy Network is having it's annual patient conference in Jacksonville, Fl this Oct. It could be a wonderful experience for both of you.

Lorrie


#7 GFofSleepyBF

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Posted 28 April 2009 - 08:13 PM

QUOTE (ohiolor @ Apr 29 2009, 12:00 AM) <{POST_SNAPBACK}>
Hi GF and welcome to the boards!

My husband has N and we've been together for nearly 25 years. He was diagnosed perhaps 10 years ago. As you have found out, it isn't always easy to live in a Narcolepsy partnership, but then again, no relationship is without it's problems....at least we know what we are facing (more or less). You sound like you really care about and love your guy.....that's key. I've met lots of folks that are able to make their relationships work...and then some that have not. For myself, I have found that when I really need him to have it together, he does (like my daughters wedding). He can go several days without naps etc, but then I know the "crash" is coming and I give him all the time he needs to get himself "normal" again. My hubby doesn't have C so we mostly just deal with the EDS. Reading these boards is really helpful to me. I've been able to learn more about how N affects others, therefore, I understand my husband much better. Feel free to drop in with any questions you may have and I'll do my best to help you out. If you and your BF are able to swing it, the Narcolepsy Network is having it's annual patient conference in Jacksonville, Fl this Oct. It could be a wonderful experience for both of you.

Lorrie



Hi Lorrie,

thanks for your reply. I've actually read most of this forum, as in every reply. I'm trying to find answers or at least ways to deal with this. My bf doesn't have cataplexy either, just the EDS which I guess is a relief reading some of the other posts of people that are affected by it as well.

We have found a few really good doctors in the last year and that has really helped us a lot. My bf is currently on dexamphetamines and Effexor. It seems to be doing the job, he still has occasional severe EDS, but 80% of the time, he can stay awake if he really needs to. That's a massive improvement from say 12 months ago, when he wasn't on meds and just couldn't cope with day to day life.

We are also seeing a therapist who is helping him with some of the depression that comes with the N, and is also helping me deal with living with him.

I'm so happy to have found NN, just reading other people's responses and knowing we are not alone in this, has helped me enormously. I'm grateful that I can talk to others. I have never knows anyone else with narcolepsy and it has come as a bit of a shock to me just how debilitating it can be.

I have promised him I would put in 110% in supporting him, and I am pretty sure I have. He has told me that his sleeping routine these days is the best it has been in the last 10 years. Which I guess means I must be doing something right. I just feel really helpless sometimes becasue I can see how much he struggles with it and I am unable to do much for him sad.gif

I will keep coming back to this forum on a daily basis, it's already helped me, and my bf in a way smile.gif

Thanks again!

#8 sleepless sleeper

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Posted 28 April 2009 - 09:54 PM

QUOTE (GFofSleepyBF @ Apr 28 2009, 12:45 AM) <{POST_SNAPBACK}>
Hi there

this is my first post...

My partner of 4 years has narcolepsy, and he has been diagnosed for around 10 years. I knew he had it when I first met him, and fell i love with him. The last few years have been extremely tough as I don;t really know how to cope with it sometimes.

He doesnt work, I work full time. He is on disability pension, but it's just no enough for us to live. He gets very very moody, blames me for things, but when he is feeling better, he is wonderful. I go with him to all his appointments, make sure he takes all his meds, have helped him get into some kind of a sleep routine.

Some days I just think of leaving cos I can't deal with it, and feel very alone...though I know I wont leave as I love him too much. How does everyone here cope with a long term N partner? Can I do this for a lifetime???

Sorry for the rant sad.gif

as far as me: u r asking the wrong person. my husband is like u, but i wonder y he doesn't just walk out the door. we have kids, tho. maybe u should leave b4 things bcome 2 resentful 4 u. sometimes there is no happiness here. other times, it comes from the kids.

#9 GFofSleepyBF

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Posted 28 April 2009 - 10:53 PM

QUOTE (sleepless sleeper @ Apr 29 2009, 12:54 PM) <{POST_SNAPBACK}>
as far as me: u r asking the wrong person. my husband is like u, but i wonder y he doesn't just walk out the door. we have kids, tho. maybe u should leave b4 things bcome 2 resentful 4 u. sometimes there is no happiness here. other times, it comes from the kids.



Thanks for your reply.

That's just it though. I don't want to leave him...maybe it's the hope that things will get better (though I know realistically they won't). I am a very strong person, been through many difficult situations in my life, and I think I can handle anything thrown at me. But narcolepsy is something that I just don't know how to deal with.

Some days I just want to scream at him to stop being so lazy and to help me out a bit, and then I realise my own thoughts and feel absolutely terrible. We are seeing a therapist who is helping both of us, and things are improving. Without the narcolepsy, he is the most perfect partner. I love him with my whole heart, and I am pretty sure that if I left him, it would make me so miserable that I myself would fall into depression.

He has told me that I keep him going, that he has never ever had a partner as supporting as me, and that I am "the one" for him. But the reason he hasn't asked me to marry him is that he doesn't want to be a burden on me. He wants to be able to take care of me too, but knows he can't right now.

I just don't know what to do. I'm in my late 20's, he is 34. I'm ready to settle down and start a family, but he is scared of not being able to look after kids etc.

I'm just very confused...

#10 sleepless sleeper

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Posted 29 April 2009 - 10:26 PM

I am told that I get a little on the negative side, so I probably should step out of this one. Do what your heart tells you, and if it says to stay, then stay. But stay with a whole heart. I'm thinking of you, and the very best of luck.

#11 jenji

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Posted 29 April 2009 - 10:59 PM

I would strongly advise that you go and talk to a therapist on your own as well. Actually, it would be a good idea for both of you to go to your own, separate therapy sessions, but for the sake of this response I'll refer only to your concerns.

Couples therapy is fine, but you have to take care of yourself before you can take care of someone else. Otherwise you find yourself living in extremes; dancing to another's tune: happy when he's happy, distraught when he's distraught etc., which doesn't do either of you any good. Therapy on your own will teach you to form personal, realistic boundaries that will be better for you both in the end.

Living with and/or around a chronic illness is extraordinarily difficult and can be so very easy to lose your sense of identity: that is, you are the gf of man with narcolepsy.

I could elaborate even more, but I'd rather just get to the point: go and talk to someone on your own. I cannot advise this strongly enough. You, in a sense, are living with a chronic illness as well and to not "treat it" is no different than to not treat any other illness or problem. I'm suret that you find yourself mentally and even physically exhausted with the back and forth, up and down, while mental health is important for well-being and therapy is one of the most difficult adventures to begin, but it is also one of the bravest and most proactive moves for an individual who is interested in happiness, fulfillment and self-evolving.

Good luck,
jenji

#12 sleepless sleeper

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Posted 30 April 2009 - 07:42 PM

QUOTE (jenji @ Apr 29 2009, 09:59 PM) <{POST_SNAPBACK}>
I would strongly advise that you go and talk to a therapist on your own as well. Actually, it would be a good idea for both of you to go to your own, separate therapy sessions, but for the sake of this response I'll refer only to your concerns.

Couples therapy is fine, but you have to take care of yourself before you can take care of someone else. Otherwise you find yourself living in extremes; dancing to another's tune: happy when he's happy, distraught when he's distraught etc., which doesn't do either of you any good. Therapy on your own will teach you to form personal, realistic boundaries that will be better for you both in the end.

Living with and/or around a chronic illness is extraordinarily difficult and can be so very easy to lose your sense of identity: that is, you are the gf of man with narcolepsy.

I could elaborate even more, but I'd rather just get to the point: go and talk to someone on your own. I cannot advise this strongly enough. You, in a sense, are living with a chronic illness as well and to not "treat it" is no different than to not treat any other illness or problem. I'm suret that you find yourself mentally and even physically exhausted with the back and forth, up and down, while mental health is important for well-being and therapy is one of the most difficult adventures to begin, but it is also one of the bravest and most proactive moves for an individual who is interested in happiness, fulfillment and self-evolving.

Good luck,
jenji


Well said.

#13 geddygirl

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Posted 14 June 2010 - 08:35 AM

My husband and I have been together for 12 and a half years, married for 6 and a half. We have kind of "known" he had narcolepsy for about 10 years, but he has been diagnosed for about 5 years. He has EDS and cataplexy, and although he has tried/is trying Provigil, Nuvigil, and Zoloft, all of the medications have only had marginal positive effects.

Being narcoleptic is hard, but being a supportive spouse of a narcoleptic is definitely no picnic. We fight a decent amount due to the various frustrations caused by the narcolepsy, but what serious couple doesn't fight? Like one of the previous posts said, at least we know what we're up against.

I do feel like my husband blames me for things sometimes, but he usually figures it out and eventually apologizes. I have my share of unfair moments, too. Example, no matter how many times I experience him falling asleep just when it's time to do the dishes, give the kiddo a bath, etc., I still feel resentment about it most of the time, even though I know it's totally unfair to blame him for something he can't help.

With my husband, pretty much any time he sits in one place and is not moving around, he's going to be out within 15 minutes. This really puts a damper on trying to watch a movie, sit and talk, etc. I get upset because he will have been wide awake for a couple hours, but then I start trying to talk to him and he falls asleep on me. I tend to take it personally. Even though I know it's ridiculous, that explanation doesn't do much when I'm in that moment of wishing he could wake up and we could just have a normal conversation.

I am fortunate to have one very close friend who has known my husband even longer than me (she introduced us, in fact) and she is pretty supportive, but other than that, I feel you in the "no one seems to understand" department. For example, my husband's friends like to go fishing with him so they can see him freeze up when he tries to set the hook on a bass. I know they are just guys being guys, but I still don't like it.

I am surprised that there are not more spouses on the board. I'm new here, so maybe I just haven't found them yet. Anyway, if your spouse is a narcoleptic, feel free to drop me a line; it would be nice to talk to someone who can relate.

#14 ohiolor

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Posted 14 June 2010 - 09:49 AM

Hi Geddygirl and welcome to the boards! You're right, there aren't a lot of spouses that visit the boards regularly (which is really too bad). We need support just as much as our spouses do!

Lorrie

#15 geddygirl

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Posted 17 June 2010 - 11:59 PM

Thanks Lorrie. I am definitely the more likely person than my husband to get on the computer, so I'm looking forward to participating in the NN. The people here have already been VERY helpful.

#16 Saraiah

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Posted 18 June 2010 - 11:19 AM

My husband and I have been together for 12 and a half years, married for 6 and a half. We have kind of "known" he had narcolepsy for about 10 years, but he has been diagnosed for about 5 years. He has EDS and cataplexy, and although he has tried/is trying Provigil, Nuvigil, and Zoloft, all of the medications have only had marginal positive effects.


Hi Geddygirl and all,

I know this is off-topic here, but has your husband been able to try Xyrem in addition to the stimulants you've listed? Stimulants alone worked to keep me awake for a few years, but then my symptoms got worse after an illness, and now without Xyrem AND a stimulant, I'm completely lost. It makes sense to me that this would be the case, since the stimulants only mask narcoleptic exhaustion, while Xyrem actually allows the PWN to get restorative sleep.

I'm not the spouse - I'm the PWN - but wanted to make one suggestion. When my husband and I need to talk, a lot of the time we'll go for a walk, even if it's only a 2-3 minute walk. The speed of the walk tends to be determined by how sleepy I am - the more sleepy I am, the faster we have to go to keep me awake. Often (though not always) walking is enough to keep me more awake and alert, and present in the conversation. Of course, walking can be tough when you've got little kids and their schedules to attend to. Perhaps it might help to build a walk in once a day, or every other day, at a time when the kids tend to be awake and in a good mood? I find it helpful to know that I've got a scheduled time when I can get my husband's attention - and he doesn't have narcolepsy!

Another idea, which I can't afford now but hope to in the future, is the idea of getting a treadmill for the house. I'm hoping that if I were on a treadmill (at a non-jogging pace), I'd be able to reliably stay awake to talk on the phone, talk to my family, watch a movie, etc. There's a professor at the Mayo Clinic who's even designed a treadmill DESK. He sets it up so that he walks 1.0 -1.5 miles per hour all day, while working at a desk that's set up over the treadmill at standing height. He reports he can walk at that pace and still type on the computer and take telephone calls without trouble. I'm going to try it one of these days...

Cheers,
Saraiah

#17 geddygirl

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Posted 19 June 2010 - 10:23 AM

Thanks for the advice about taking a walk, Saraiah. We currently take a walk just a few times a week with our son and four 70 lbs.+ dogs (Yes, I said four... my husband is a patient man...). Physical activity definitely seems to help him stay awake better than almost anything else.

I LOVE the idea of a treadmill desk - whether you're a PWN or not! We used to live in some apartments with a fitness room, and I loved to read a book on the treadmill. Maybe somewhere down the road we could try getting one in the house so we could watch a movie. That's an idea I definitely hadn't thought about before.

As far as the Xyrem, that's kind of his last resort. We've heard SO MANY horror stories about people on it. It seems like for PWN Xyrem is either a godsend or a nightmare and no inbetween. His doctor is very loathe to let him try it anyway, as we HAVE asked about it before. The doc says it will be the "last resort" as well, and even if my husband gets to the point where he wants to give it a shot, I have a feeling this doc won't be prescribing it. We'd have to find a different neurologist (which would be A-OK with me because this one does not seem to listen very well and does things like canceling scheduled appointments on his patients bc he's suddenly going "out of town" (probably "vacation")... but that's a different thread, I suppose...)

-Laura



Hi Geddygirl and all,

I know this is off-topic here, but has your husband been able to try Xyrem in addition to the stimulants you've listed? Stimulants alone worked to keep me awake for a few years, but then my symptoms got worse after an illness, and now without Xyrem AND a stimulant, I'm completely lost. It makes sense to me that this would be the case, since the stimulants only mask narcoleptic exhaustion, while Xyrem actually allows the PWN to get restorative sleep.

I'm not the spouse - I'm the PWN - but wanted to make one suggestion. When my husband and I need to talk, a lot of the time we'll go for a walk, even if it's only a 2-3 minute walk. The speed of the walk tends to be determined by how sleepy I am - the more sleepy I am, the faster we have to go to keep me awake. Often (though not always) walking is enough to keep me more awake and alert, and present in the conversation. Of course, walking can be tough when you've got little kids and their schedules to attend to. Perhaps it might help to build a walk in once a day, or every other day, at a time when the kids tend to be awake and in a good mood? I find it helpful to know that I've got a scheduled time when I can get my husband's attention - and he doesn't have narcolepsy!

Another idea, which I can't afford now but hope to in the future, is the idea of getting a treadmill for the house. I'm hoping that if I were on a treadmill (at a non-jogging pace), I'd be able to reliably stay awake to talk on the phone, talk to my family, watch a movie, etc. There's a professor at the Mayo Clinic who's even designed a treadmill DESK. He sets it up so that he walks 1.0 -1.5 miles per hour all day, while working at a desk that's set up over the treadmill at standing height. He reports he can walk at that pace and still type on the computer and take telephone calls without trouble. I'm going to try it one of these days...

Cheers,
Saraiah



#18 Saraiah

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Posted 19 June 2010 - 02:25 PM

Hey Laura -

One more bonus for the treadmill desk is that the Mayo Clinic guy says walking on it throughout an 8-hr workday, quite slowly, is enough to burn off 40 lbs or so over the course of a year. Either that, or you get to eat more chocolate cake!

Saraiah