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07/12/2010 11:49 AM

My Boyfriend/Fiance

paigerburke
paigerburke  
Posts: 3
New Member

He has narcolepsy and i want to know how to help him with everyday life. i want to understand what he goes through so i can be more helpful. Can anyone help? Sad
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07/12/2010 12:33 PM
MissStacey
MissStacey  
Posts: 14845
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I'm an Advocate


07/12/2010 03:16 PM
smd
smdPosts: 292
Member

What a wonderful thing to hear! He's lucky to have someone so supportive. Let us know what we can do to help.

09/26/2010 07:38 PM
DarkFireBabe
DarkFireBabe  
Posts: 9
New Member

Aww, i totally support you. Smile The best you can do is be there for him and listen to what all he has to say. Being a good listener shows you care and will make him very very happy. If he's upset about it, you can hug him and tell him wonderful things and such. That's what I did with my boyfriend and it's made us grow stronger through thick and thin and I'm sure it will happen for you too. Smile

10/28/2010 07:20 AM
funkykizzy
 
Posts: 6
New Member

Hi Paigerburke! I have narcolepsy and all I can tell you is that I often do not understand my condition and I like to think that I can do more than what my narcolepsy will allow. When I am crabby or feeling ill or starting to slur my speech, the best thing that my husband does for me is to find me a place to sleep or tell me that it is ok to stop fighting it and lay down. I am so grateful for the "permission" to be narcoleptic (in other words, for his understanding) and I feel so much better afterward. It is very frustrating to me to be narcoleptic and for my hubby to recognize when I am struggling and tell me that it is ok helps me to relax a bit and not be so angry with my condition. I hope that helps!!

11/03/2010 11:36 AM
mariwashere
Posts: 15
Member

Funkykizzy, what a fantastic way of putting it!! My husband does the same for me... He comes up to me and kisses me, holds me, or puts his hands on my arms and says "sit down and relax"... then he gets me a blanket and pillow and tucks me in. It is incredibly supportive to have someone who recognizes your strength, but also recognizes when you're trying to be too strong and lets you know it's ok to calm down and give your body what it needs.

Paige, the best thing is to read read read, and then ask specific questions to understand the nature of the condition in general, then ask him questions and observe him as well... you may discover patterns or trends he doesn't see. Let him be strong when he's feeling strong, but let him know it's ok when he needs to rest. I say let him be strong because some people get so babied through it that they become lazy or use it as an excuse. If he's not doing that, then your support and understanding is the best thing you can give him.


11/06/2010 07:19 AM
smd
smdPosts: 292
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Post edited by: smd, at: 04/07/2013 01:54 PM
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