How educated are your spouse's re: N?

Julie - posted on 04/27/2009 ( 3 moms have responded )

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I am curious how educated your spouses are with your symptoms of Narcolepsy? This has been frustrating for me since I have only know I am blessed with N for the last year & 5 months.



My mother-in-law suggested that my husband should make an appointment with my Dr. so that the Dr. can "slap some since into him".



My kids have a new nickname for me.......Dory...from Finding Nemo......short term memory.........

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Julie - posted on 05/13/2009

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Thanks Vanessa and Rachael for sharing.



It is so helpful to know that there are others that actually understand how I am feeling. I can't remember ...haha...if I already shared this. My mother-in-law sent me an e-mail the other day asking me to forgive her after she went to the library and got some books on N. She said that now she realizes how serious of a condition it is and now she understand that I am not just lazy or unmotivated. I am thankful that now she realized what I have to deal with on a daily basis, but it kinda did hurt a little that she did not just listen to me and take my word for what I deal with.



Ready for "a good one"......Rachael, you said that your boyfriend thinks you should be able to keep the house clean....yeah, know all about that. I wake up in the morning all motivated to clean and organize. I make breakfast, lunches and take the kids to school and get back home and all those great thoughts have escaped and I can't figure out what to do. I think sometimes that when NO ONE IN MY HOUSE helps out (slight exaggeration 'cause my hubby does help out with some things mostly referring to my kids) I get so overwhelmed with what needs to get done, my mind just shuts down.



Oh, Yeah, the funny part. My hubby now makes me a "Honey DO list" with lots of detail. Like 6am wake up, take shower, get ready for day, 6:45am wake up the kids, 6:50am make lunches and on and on. Most people would think that is ridiculous but I can't even begin to tell you what peace it has give me to just be able to look at his list and do what I need to do. He has even allowed a morning nap and an afternoon nap for me. Obviously I may not follow it exactly like he has listed, but it sure does help me get more accomplished around the house. My next goal is to actually make the list myself. Then I will fell like a "big girl". :o) I am blessed to have a husband with a great since of humor and we use that humor a lot.



I sometimes feel "guilty" when my 10 year old want to go play volleyball outside with me and I am having a "moment" (or the many other things that come up when the big N rears it's ugly face). Anywho, those are my thoughts for the moment.



Thanks ladies, for sharing and reminding me that I am not alone.

Rachael - posted on 04/27/2009

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Cute nickname!! My memory is sooooo terrible!!!! I'm sure I would forget my head if it wasn't attached. (that's not even exagerating..lol)



My boyfriend is very ignorant to the subject of N. He just doesn't get it. He gets insulted if I'm on the phone with someone and wide awake and then get off and he tries to talk to me and I fall asleep on him. He doesn't get that I can't contro when it happens and when it doesn't. He throws it in my face a lot. If we get in a fight about something he'll say somthing like "all you ever do is sleep" or "you use your N as an exuse" or One time he even said "do you think I want to sit here and watch you sleep your life away?"

We don't go anywhere or do anything together cause he's always afraid I'll fall asleep. He gets embarassed when I do. How the heck does he think I feel? I don't know about you but I have a hard time getting the work around the house done and he's old fashioned, thinks I should have it imaculate all the time. I have got him to watch shows and got him to read things I've coppied off of the internet but HE JUST DON"T GET IT!! He gets mad at me when I'm falling asleep trying to help my daughter with her homework....so step in and help when i can't hold my eyes open. I';m not doing it cause i want to.

One problem is, he has figured out P'ing me Off snaps me out of an attack. Needless to say I spend a lot of time PO'ed...lol

User - posted on 04/27/2009

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It took my husband a LONG time to realize that my sleepyness is permanent. He would consistently plan a "full" weekend of things to do and would get upset when I would look at the calendar and say that I couldn't attend everything. He is much better now and will ask if adding something to the calendar. He even tells me sometimes that I need to take a nap!

I have to be honest...I had to remind him often that I couldn't predict or explain why one day was a good day and the next I would be exhausted. He thought my meds were magic pills and could give me energy that matched his. I have had N. for over 5 years now and he is used to how this works now...he has been for years. However, my memory is getting worse, so I love your nickname!

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