I love my husband but I hate his illness. I'm trying to learn how to help my family thrive despite my husband's narcolepsy, and I hope this blog also helps anyone else living under the weight of this disease.
Knight Solstice, When I read this interview, you could have been my husband. Thank-you for the reminder of what he deals with everyday. I wish there was more associations in Canada. Narco's Wife. Ottawa, ON
Hi! I really appreciate this blog. I have narcolepsy, and it's been so bothersome for most of my adult life. Sometimes I feel bad that my boyfriend has to deal with me being so scattered and forgetful all the time, with having trouble finishing projects and just being tired constantly. But seeing this from the point of view of someone else, someone who loves somebody with this condition, makes me feel that maybe he just understands and cares about me regardless. Maybe I don't have to feel bad about it.
I wanted to give you some advice in return. This may not work for your husband, but it unexpectedly worked for me. I regulated myself. When I was younger, I would fall asleep randomly-- at dinner, any time I was on the phone, just sitting in a theater (i'd miss the movie), once at a job interview (during the interview)-- that's how bad it was. Then, I started teaching.
I took a job that required me to get up at 5am every day, and, in order to do that, I had to go to sleep by 10pm every night. This was a jolt to my system. I was used to waking up between 7:30 and 8 and going to bed at 11 or later. By drastically shifting my wake/sleep schedule by about two hours earlier-- and sticking to it like clockwork... I managed to regulate myself. I don't teach anymore. However, I always wake up by 6am at the latest and have to sleep at 10pm-- even if just for a half an hour. That's non-negotiable. On the plus side, I am awake for most of the rest of the day, and can be up at night after I take a nap.
They say that if you establish a very regular waking/sleeping schedule, you will train your brain to respond to that. This is supposed to work for narcoleptics. It doesn't get rid of the narcolepsy (I still lose my keys and can't remember thirty seconds ago)-- but it did, for me, get rid of random sleep episodes. I now have a very regular sleep episode at 10pm every night-- and that is infinitely preferable.
Knight Solstice,
ReplyDeleteWhen I read this interview, you could have been my husband. Thank-you for the reminder of what he deals with everyday. I wish there was more associations in Canada.
Narco's Wife.
Ottawa, ON
Have you tried Xyrem to help you get some quality sleep at night? It helps with the cataplexy as well.
ReplyDeleteHi! I really appreciate this blog. I have narcolepsy, and it's been so bothersome for most of my adult life. Sometimes I feel bad that my boyfriend has to deal with me being so scattered and forgetful all the time, with having trouble finishing projects and just being tired constantly. But seeing this from the point of view of someone else, someone who loves somebody with this condition, makes me feel that maybe he just understands and cares about me regardless. Maybe I don't have to feel bad about it.
ReplyDeleteI wanted to give you some advice in return. This may not work for your husband, but it unexpectedly worked for me. I regulated myself. When I was younger, I would fall asleep randomly-- at dinner, any time I was on the phone, just sitting in a theater (i'd miss the movie), once at a job interview (during the interview)-- that's how bad it was. Then, I started teaching.
I took a job that required me to get up at 5am every day, and, in order to do that, I had to go to sleep by 10pm every night. This was a jolt to my system. I was used to waking up between 7:30 and 8 and going to bed at 11 or later. By drastically shifting my wake/sleep schedule by about two hours earlier-- and sticking to it like clockwork... I managed to regulate myself. I don't teach anymore. However, I always wake up by 6am at the latest and have to sleep at 10pm-- even if just for a half an hour. That's non-negotiable. On the plus side, I am awake for most of the rest of the day, and can be up at night after I take a nap.
They say that if you establish a very regular waking/sleeping schedule, you will train your brain to respond to that. This is supposed to work for narcoleptics. It doesn't get rid of the narcolepsy (I still lose my keys and can't remember thirty seconds ago)-- but it did, for me, get rid of random sleep episodes. I now have a very regular sleep episode at 10pm every night-- and that is infinitely preferable.
Anyways, thanks!