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Lover Of A Man With Narcolepsy


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#1 partner

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Posted 20 October 2013 - 08:52 PM

I love this forum, I have found out more useful information here than anywhere else. I love my man. He has narcolepsy, he was diagnosed about 12 years ago. I have known him for 3 1/2 years and have come to understand his narcolepsy, it seems to be so different for everyone. He struggled to tell me about it, he couldn't really explain it to me. We still struggle, I still don't understand it fully and I am not sure I ever will. I do accept it as a part of our lives and we try to deal with the issues it causes as they arise. This is becoming easier as I understand and recognise the symptoms in him. We could be out shopping and he will suddenly say he needs to sit down or get back to the car and put his head down, he will often during the day just wander off and I will find him lying down for 10 - 15 minutes, he is then semi refreshed.

 

I suppose from reading the posts on here I ask for the same thing that narcolepsy sufferers are asking for, patience and understanding. As a partner I don't always know what is happening, I may not be aware that the disease has taken over again and that you are not able to tell me what is happening. Be patient with us, I can only speak for myself and sometimes I feel that I may have done something to upset you or annoy you, sometimes if I have said something this can trigger an episode (may be a bad choice of word, please don't jump on me). I know that stressful situations have the same effect, you close down because you don't have the energy to deal with the situation at the time. This is difficult for me too, trying to guess if it is me or the narcolepsy.

 

I have read on here about reduced sex drive, not an issue for my man. Not sure if it is the Dex or just him but 24 hours a day would suit him just fine, lucky I feel the same way so this does not cause any issues for us.

 

Anyway not really sure why I am writing this other than to say I have found a man that I love deeply and his narcolepsy makes life interesting but once I understood it a bit it really I don't see it as an issue. I hope you all find someone to share and enjoy your lives with, if you already have someone try to be as patient and understanding with them as they are with you.



#2 WarmColors

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Posted 21 October 2013 - 12:37 AM

Thanks for posting!

 

It's really nice to hear from an outside perspective. I one hundred percent agree that having patience, empathy and forgiveness are such important aspects of living a satisfying and wholesome life, with or without narcolepsy. I'm glad that you and your significant other have been able to work through the difficulties that narcolepsy brings. Honestly, I find what you said encouraging, as I've been concerned about the likelihood of sharing my life with someone because of my recent narcolepsy diagnosis.



#3 Ferret

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Posted 21 October 2013 - 09:59 AM

Nice post Partner! Thank you for sharing your perspective. You are what (in my family) we call a "Keeper". Stop second guessing yourself as to whether you "caused" something to happen. Strictly speaking that's a female point of view whether your partner is Narcoleptic or not...men are from Mars and women are from Venus. When I read that book, I understood men a whole lot better...they need cave time...yours just happens to sleep in his cave. :P

There's someone for everyone. We've been together for 32 years now and 27 of those years I've been a narcoleptic with cataplexy. So, yeah, it's more than doable but it has it's ups and downs just like any relationship. Honesty, integrity and respect are the most important values in a relationship...and none of those is affected by being a Narcoleptic or the Partner of a Narcoleptic. 

May you have many happy years together.



#4 sk8aplexy

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Posted 24 October 2013 - 01:16 PM

"cave time" -> very accurately fitting!

 

I hope to one day meet some awesome lady, who can accept me and love me, for who I am.  Along with working with, how I seem, to have to be.

I most definitely am one who will respect and care, be honest and upfront; as well as entirely willing to fluctuate in whatever way necessary to work with her.

Loving of, who she is. That is, if I ever meet, such awesome lady...

I know she must be out there, being an intravert has made the path/journey quite ruff and tough.

I'm optimistic, yet reserved; one day, though, we will meet...

 

(just had to write that in response, as the post and comments are encouraging.)



#5 ironhands

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Posted 24 October 2013 - 01:19 PM

I think we all want that.  I think knowing what I have now might make it easier, my lack of energy pretty much killed both of my long term relationships in the past, but I've pretty much given up.  When you're mid 30s, it's hard enough to find someone.  A lot harder when you're overweight, tired, depressed and broke lol.



#6 sk8aplexy

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Posted 24 October 2013 - 01:26 PM

Right there, mostly, with you ironhands.

33, I live with my Mother (argh, but it's okay, in my eyes), broke, living in a college drunken smaller midwest town (yakk), sleep deprived face or '*BEEP*y resting face', very low tone voiced (which makes socializing real hard at most times), not really too depressed but definitely unable to chit-chat or not be quite serious (at least in appearance and/or topic + tone)...

One day, though...



#7 ironhands

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Posted 24 October 2013 - 01:32 PM

Oh, right, I forgot about the resting face lol, I get that all the time, and the voice.

I'd love to live with parents, half my paycheck goes to a crummy basement apartment with a noisy landlord