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Almost breaking it off because of N Symptoms


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#1 kogeliz

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Posted 04 January 2008 - 09:51 AM

Hi, I'm a 27 year old female with narcolepsy.
I take Provigil and Xyrem.

So, I usually attract myself to men who seem to be very relaxed and patient... nurses, people who work with the handicapped, etc. This is because I know that I can be tough to deal with.

My memory is kinda bad, I get kind of confused a lot... and it's hard for me to follow movies with any sort of complex plot. Plus... I have ridiculous alarm clocks blasting in the morning, I'm always running late, etc.

So, I've been in a relationship with someone for about 7-8 months now. He knows about my narcolepsy, has came to support group meetings, reads about it...etc

...but lately he has been getting impatient with my memory and frequent questions. And in the mornings, a little irritated that it's hard for me to get up and get out the door (I know he just wants me to be on time so i don't keep getting in trouble and being refused raises).

I told him I understood that I can be annoying with my forgetfulness and my confusion... but I can't help it as much as I try.
He says, he knows I can't help it, but he can't help feeling annoyed.

He says sometimes he feels disappointed that I don't remember things and it feels like I don't even know him.
Examples: I didn't remember that he told me his father passed away on Christmas, I didn't remember a large bookshelf full of first edition books in his hallway. I can't recall any details about 90% of movies I've seen

After a lengthy and somewhat sad conversation, we both decided we would try harder (he: trying to have more patience - me: trying to pay attention to things more).

But I can't help but feel we are who we are...

Anyone else have this type of problem in their past/current relationships? How was/is it dealt with?






#2 Lovemyhusband

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Posted 19 January 2008 - 07:38 PM

I'm sorry that you are having trouble with your boyfriend. Just remember that no one is perfect with or without N. Its not always easy to be patient. I have been with my husband for 18 years and we only just found out that he has N. This has been very helpfull in understanding why my husband falls alseep the minute he sits down on some days. The good thing is that he is worth my time and effort. I have given him attitude in the past about falling asleep at the DR office, my moms house, etc. but it usually is because I am under pressure from someone or time is against me. My only suggestion is to decide wether or not he thinks you are worth the effort it takes to keep you happy and healthy. If not that means someone else is waiting for you. Good luck.

#3 greatbig47

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Posted 12 February 2008 - 11:11 AM

Once again, Lovingmyhusband is right!

The only one that can wiegh out if it's worth it is you. And if he just doesn't get it, there is someone out there better for you...there is no doubt about that! Never settle...imagine the best...expect the best...get the best!

-Stu

#4 greatbig47

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Posted 12 February 2008 - 11:30 AM

(kogeliz)
I told him I understood that I can be annoying with my forgetfulness and my confusion... but I can't help it as much as I try.
He says, he knows I can't help it, but he can't help feeling annoyed.



Are YOU annoying, or are the symptoms of your narcolepsy annoying? There's a big difference. You are NOT your symptoms. While even YOU might be annoyed with your symptoms, that does NOT make you annoying.

I personally couldn't stand someone that saw me as annoying because of my cataplexy...My cataplexy doesn't make me annoying...but let me be the first to tell you I find my cataplexy very annoying!

Does your guy think YOU are annoying, or does he think your symptoms are annoying? Can he tell the difference?

Just some thought for consideration smile.gif

#5 Lovemyhusband

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Posted 22 February 2008 - 11:33 PM

I was just wondering how you were doing. If you get a chance let us know. Take care smile.gif

#6 kogeliz

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Posted 04 March 2008 - 10:12 AM

I was just wondering how you were doing. If you get a chance let us know. Take care


Everything is alright. I think my boyfriend is trying to be more understanding. He also explained he has been stressed out at work and that has taken a toll on his patience as well.

He said he would like to go with me to the Spring Conference in Albany next month, too.

#7 kogeliz

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Posted 04 March 2008 - 10:14 AM

(greatbig47)
Are YOU annoying, or are the symptoms of your narcolepsy annoying? There's a big difference. You are NOT your symptoms. While even YOU might be annoyed with your symptoms, that does NOT make you annoying.

Does your guy think YOU are annoying, or does he think your symptoms are annoying? Can he tell the difference?

Just some thought for consideration smile.gif


(Not sure if this will end up a double post... )

What I meant was, I think he finds it annoying when I can't remember numbers or directions... or take too much time trying to find things. Or when it takes me an extra 30 minutes to get out of bed so we can go do something.

#8 Lovemyhusband

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Posted 26 March 2008 - 09:46 AM

I'm glad to hear you might be making the trip to the conference. I'm not sure if we have the extra cash to go yet, money is tight these days, but I would love to get the chance to meet some fellow NN members.

#9 AssociatedWithFire

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Posted 09 January 2009 - 06:16 PM

I need help, advice, or somthing. My wife wants to leave me. I dont know what to do. she doesnt understand what I am going through and I guess I am failing at explaining. we seem to be stuck in the if you do X I can do Y senario. She needs help with the kids but for me to do that I need help waking up etc. I dont want to lose her but I dont know what to do any more. I get confused so easily. I cant keep focused long enough to make sense of trying to solve anything. Im so dizzy with confused emotion right now. If anyone out there has had a hard initiall period but found a way to help each other please let me know. please If you have really good info email me directly at algaebiodiesel@ hotmail.com or contact me via yahoo's instant email. I need all the help I can get. my family is my life please help me save my relationship.

#10 dogdreams

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Posted 09 January 2009 - 10:05 PM

Omygosh I'm so sorry! I don't have any good advice for you but I've been through it. I just didn't have kids at the time so it wasn't quite the same. My N got bad during a 2.5 yr relationship that was really serious. He just couldn't cope with a chronic condition and never tried to understand what I was going through. Eventually we had to go our separate ways. It doesn't seem fair...I was "normal" when he met me and he wanted a strong woman who would do lots of 'outdoorsy' things with him. I didn't get to 'screen' him first for that kind of situation and we never saw it coming. I tried to be what I once was but by the end of our relationship I was always sleeping and falling down. He got sick of it and wasn't always very nice about it either. I think in the end it was the right thing for me to walk away and I've since found a patient man who is really supportive and doesn't mind my N at all. We have a family now and I know how horrified I'd be if I thought he was going to leave and break up our family, especially if that meant he'd take our son and I'd only have visitation rights. You'll certainly be in my thoughts and I hope someone here will have some good advice for you.

#11 angellus

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Posted 09 January 2009 - 11:04 PM

wish i had some wisdom.. ive lost everything.. except the ability to breathe and that is in question at night as well.. (sleep apnea) Unless hse is willing to get counseling or truley understand and deal with it...I dont know whta kind of magic bullet would help her and you.. you need to be one the same page or at least let her look over your shoulder into what iks going on with you... It always takes two to make it work. It doenst matter how strong one link is in a chair if the rest are made of pot metal. hmmm boy i am a ray of sunshine...


QUOTE (AssociatedWithFire @ Jan 9 2009, 06:16 PM) <{POST_SNAPBACK}>
I need help, advice, or somthing. My wife wants to leave me. I dont know what to do. she doesnt understand what I am going through and I guess I am failing at explaining. we seem to be stuck in the if you do X I can do Y senario. She needs help with the kids but for me to do that I need help waking up etc. I dont want to lose her but I dont know what to do any more. I get confused so easily. I cant keep focused long enough to make sense of trying to solve anything. Im so dizzy with confused emotion right now. If anyone out there has had a hard initiall period but found a way to help each other please let me know. please If you have really good info email me directly at algaebiodiesel@ hotmail.com or contact me via yahoo's instant email. I need all the help I can get. my family is my life please help me save my relationship.


#12 dogdreams

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Posted 09 January 2009 - 11:32 PM

QUOTE (angellus @ Jan 9 2009, 08:04 PM) <{POST_SNAPBACK}>
hmmm boy i am a ray of sunshine...


It's ok. This is the one place where it's ok not to be a ray of sunshine. I prefer rain anyway. Constant sunshine is so dreary!

#13 jenji

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Posted 10 January 2009 - 01:01 AM

Perhaps you could look into going into couple's counseling with a therapist that does counseling for chronic illness as well. Maybe ask your sleep doc if she/he knows of any good chronic illness counselors/docs/psychogists et al.

It's a matter of creating a script which allows the other person to truly experience what it is you/we go through on a daily basis... ...that it is not a choice; it is not fatigue, exhaustion or an overwhelming sense of tired as they might experience those states. Our brain literally trips and/or shuts down and cannot trigger the correct chemicals that allow us to operate properly-- to keep us in a state of wakefulness, wherein their (your spouses brain does); it is not a matter of will power or strength; it is not a matter of getting a good night's sleep.

If you had a traditional dx like cancer, surely our loved ones would understand a bit more about the exhaustion and such that goes with it, as people can identify with such a condition better due to the exposure etc from movies, media and/or loved one's who we've seen suffer through it; if it were MS, again they might understand a bit more b/c they know more about how this disease works b/c of media exposure (say, Montel Williams), if it were Parkinson's they might think of Michael J Fox, as he has brought so much attention to that condition, which allows others to see that it happens to even those who were seemingly well for so long. The nature of these illnesses have been examined out in the open far more than Narcolepsy has been so far, which makes it more difficult for other people to relate b/c N has the stigma of: oh, you're tired We're all tired.

Well no, healthy folks are tired; narcoleptic folks--- you, your brain is your enemy and therefore you're dealing with an unpredictable, chronic condition that robs you of the ability to catch up on sleep and conquer the "tired."

Your brain, your hypothalamus is your enemy; no different than the brain is the enemy to an epileptic or the pancreas and blood insulin levels are the enemy for a diabetic. A schizophrenic cannot will themselves out of psychosis, for their brain is their enemy. You are at war with your body, so why wouldn't your wife want to be on your team? I'm pretty sure if you had cancer, MS or Parkinson's she'd be on your team.

You are at war and the battle is a difficult one to weather, but in time you may be able to work things out if you discuss these issues and include similiar analogies so that she might see you are not suffering any less than those with other chronic illnesses: that is, you do not have control over this and it is not a choice or failure on your part as a human being b/c you're not strong enough, or willing to just power through it. That's what you're doing already.... you're doing the very best that you can.

Anyway, that's my suggestion. Chronic illness therapists can be a great deal of help when it comes to providing the family/loved one's with some insight.

best,
jenji