4 replies to this topic

[carlizzle]

I'm a 25 y/o recently dx'd with N w/o cataplexy a few months ago and have been responding well to Provigil. I work rotating shifts (night one week, day the next, back and forth) and that probably doesn't help anyway, but I do my best. On off days, my wife just doesn't seem to understand that I can't just 'hang out' with her for hours. Especially on transition days. I'm basically in about as bad of a mood as I get in on days when I have to swap from days to night or back. I get home from work in the morning/evening, stay up as late as I can, then just sleep as long as I can to push myself through. Sure, I might be able to make it through a movie or a couple tv shows, but not for too long. She seems to think that if I want to do something else more intense or active, that I'm bored with her. Even if it's something thats just more interactive than watching tv. I need something that is going to keep me stimulated mentally and so I have to 'stay on my toes'. I just can't sit around all day or I'll just feel worse and more tired. I'd love for her to want to do things with me that I consider fun and active that help me stay awake, but we have a 7 month old and it's not like we can just both go off and party all the time. I don't leave her at home so I can go out and have fun or anything. It just seems like anything that we could go do together and bring the baby would be too slow or boring to keep me awake (park, go for a walk, etc...). I play video games to help me stay awake (and I obviously I like them too) and for some reason, it's fast paced enough that it keeps me awake pretty well compared to most other things. I'm not trying to make excuses to just go off alone and play while she has the baby, but I think that's how she sees it. I've even asked if she wants to play too, and she tried, but she doesn't like it. Any ideas on activities that would work for all of us? Or maybe a better way I could explain to her how I feel when I have to do slow activities for long periods of time? Maybe even tips from other shift swappers on how to transition? I've tried doing a few hours at a time, but it ends up meaning that I see my wife and daughter even less since I'm spending alot more awake off time in the middle of the night. Any help would be greatly appreciated.

[amazingracie28]

I'm a 25 y/o recently dx'd with N w/o cataplexy a few months ago and have been responding well to Provigil. I work rotating shifts (night one week, day the next, back and forth) and that probably doesn't help anyway, but I do my best. On off days, my wife just doesn't seem to understand that I can't just 'hang out' with her for hours. Especially on transition days. I'm basically in about as bad of a mood as I get in on days when I have to swap from days to night or back. I get home from work in the morning/evening, stay up as late as I can, then just sleep as long as I can to push myself through. Sure, I might be able to make it through a movie or a couple tv shows, but not for too long. She seems to think that if I want to do something else more intense or active, that I'm bored with her. Even if it's something thats just more interactive than watching tv. I need something that is going to keep me stimulated mentally and so I have to 'stay on my toes'. I just can't sit around all day or I'll just feel worse and more tired. I'd love for her to want to do things with me that I consider fun and active that help me stay awake, but we have a 7 month old and it's not like we can just both go off and party all the time. I don't leave her at home so I can go out and have fun or anything. It just seems like anything that we could go do together and bring the baby would be too slow or boring to keep me awake (park, go for a walk, etc...). I play video games to help me stay awake (and I obviously I like them too) and for some reason, it's fast paced enough that it keeps me awake pretty well compared to most other things. I'm not trying to make excuses to just go off alone and play while she has the baby, but I think that's how she sees it. I've even asked if she wants to play too, and she tried, but she doesn't like it. Any ideas on activities that would work for all of us? Or maybe a better way I could explain to her how I feel when I have to do slow activities for long periods of time? Maybe even tips from other shift swappers on how to transition? I've tried doing a few hours at a time, but it ends up meaning that I see my wife and daughter even less since I'm spending alot more awake off time in the middle of the night. Any help would be greatly appreciated.

Welcome, Carlizzle!

You sure are in a tough spot. Have you explained to your wife that you need to find something that keeps your brain awake? What does she say? Does she have any suggestions as far as activities that would work for you to keep you stimulated? It's hard having a new baby and I can understand how your wife might resent the fact that she's stuck at home while you go off, but I obviously understand your need to do it. The good thing about it is that usually babies like colors and movement so maybe you could go somewhere a little more stimulating for you (would the zoo be interesting for you at all?) or to a ballgame (if you're interested in that sort of thing). What sort of things did you two do before the baby? It sounds like you're pretty staightforward in the way you explained it here as far as slow activities putting you to sleep-does your wife understand that or is she having a hard time with that part? I've had experience working third shift in the past and it can really be brutal, I can't imagine having to bounce back and forth between the two. Has this always been your schedule or is this a new thing? Sorry for all the questions, just trying to get a handle on the situation There's a whole section on here devoted just to families and friends of PWN-do you think she might be willing to take a look and get an idea of what you're dealing with?

Amazingracie28

[carlizzle]

I think that it may be along the lines of her not understanding how it feels to have N. It seems a lot of people just think 'so what, you're tired...'. But, we all know it's not that simple. She has no suggestions because she thinks that that since I'm the tired one, I should come up with a solution. Usually I respond with 'I have a solution that keeps me awake, but YOU don't like it so YOU should come up with the solution' (knowing full well that it's a ridiculous circular argument). And it's not so much like we need things to do for like a day out, but just daily activities. Interestingly enough, we did go to the zoo about a week and a half ago and that was pretty fun I mainly just don't think she realizes how much effort is really put into trying to live a normal life as much as possible when you feel like this. And I;ve talked to her about this and she tried to be supportive, but I don't think she gets it well enough yet. I did tell her about the NN site and maybe she would understand me better if she read about it from different points of view, but I don't think she's gotten around to it yet (busy week). And to make sure I'm answering all the questions: I've been on this rotating shift schedule for about 18 months (was in the navy for 6 years before that with a far more ridiculous work load), dx'd w/ N about 4 months ago. Thanks alot for the input and if you come up with anything else, feel free to let me know!

[eww]

It's not exactly what you're looking for but have you tried to coordinate your slower activities? I mean for example you play videogames in the livingroom while she does something similar that she likes (reads, goes on the computer, listens to music, etc) in the livingroom with you? I know it's not "doing something together" but sometimes just sitting together and sharing that physical space helps reconnect the emotional space. Just an idea.

Or one of you (her) could read out loud to the other (you) while that person plays with the baby and listens to the story? I've tried playing music and having "dancing time" while household chores are being done together like sweeping, mopping, doing dishes or making dinner.

I hope those ideas help you figure out something that will work for your particular situation.



And as a footnote I have to add that in my opinion, having your significant other learn about Narcolepsy is one of the most important things to living with other people without the threat of WW3 at any moment. The understanding and empathy that can come when someone actually tries to understand what's going on and gets a feel for what is a narcolepsy-moment vs a person-being-lazy-moment can be invaluable.

[Lisa Kato]

I'm a 25 y/o recently dx'd with N w/o cataplexy a few months ago and have been responding well to Provigil. I work rotating shifts (night one week, day the next, back and forth) and that probably doesn't help anyway, but I do my best. On off days, my wife just doesn't seem to understand that I can't just 'hang out' with her for hours. Especially on transition days. I'm basically in about as bad of a mood as I get in on days when I have to swap from days to night or back. I get home from work in the morning/evening, stay up as late as I can, then just sleep as long as I can to push myself through. Sure, I might be able to make it through a movie or a couple tv shows, but not for too long. She seems to think that if I want to do something else more intense or active, that I'm bored with her. Even if it's something thats just more interactive than watching tv. I need something that is going to keep me stimulated mentally and so I have to 'stay on my toes'. I just can't sit around all day or I'll just feel worse and more tired. I'd love for her to want to do things with me that I consider fun and active that help me stay awake, but we have a 7 month old and it's not like we can just both go off and party all the time. I don't leave her at home so I can go out and have fun or anything. It just seems like anything that we could go do together and bring the baby would be too slow or boring to keep me awake (park, go for a walk, etc...). I play video games to help me stay awake (and I obviously I like them too) and for some reason, it's fast paced enough that it keeps me awake pretty well compared to most other things. I'm not trying to make excuses to just go off alone and play while she has the baby, but I think that's how she sees it. I've even asked if she wants to play too, and she tried, but she doesn't like it. Any ideas on activities that would work for all of us? Or maybe a better way I could explain to her how I feel when I have to do slow activities for long periods of time? Maybe even tips from other shift swappers on how to transition? I've tried doing a few hours at a time, but it ends up meaning that I see my wife and daughter even less since I'm spending alot more awake off time in the middle of the night. Any help would be greatly appreciated.

I can relate sitting around and watching TV can feel like death to me. And working through these types of issues that come up in families with little ones and/or fairly new partnerships gets intensly personal. My husband and I just hit 15 years (kids are 11 and 13) and it is really in the last few years that we have developed that together/seperate/no-fault embrass our differences thing. Though I still don't think he understands why it is not a personnal goal of mine to make it consitantly thro a day with out a nap and that being tired is not neccessarily related to being depressed.