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Trying To Deal With The Symptoms Of N


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#1 Stacey

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Posted 20 June 2010 - 11:45 AM

Ok a little history first.... I am 27 years old work full time and have 3 kids. I separated from my husband in Sept 09 and began having symptoms of N around Nov 09 but attributed those to increased stress in my life and trying to cope with being a single mom. I met my boyfriend at the end of December 10. At first we would laugh and joke about how tired I was, I think we both were still attributing it to the stress in my life and also my B12 deffinciency. After the tiredness didn't improve with taking my B12 injections and my levels being normal my PCP sent me for a sleep study since I do snore to check for sleep apnea but of course I don't have that instead I was diagnosed with N in the begining of May and started on meds June 1st.

So like I said in the begining of our relationship we laughed and joke and he said he didn't mind me falling asleep because he loved to watch me sleep. But then as time went on and I felt worse and worse he was not so understanding, it didn't help that I would fall asleep during conversations we were having that were serious. He always would say if I really wanted to stay up I could. I hoped with me finally getting a diagnosis that he would understand, but he didn't really change his outlook. He is aware of how the meds do help me but will still get upset if I fall asleep early because I am coming down off the Ritalin. I am struggling to get him to realize that I really don't have any control over this. We also argue often about my memory he will often ask what the point of talking to me is because I never remember what was said. We have had several long heart to heart conversations about this and I do understand his frustrations. I just don't know how to fix it. I am dragging him to my next appointment with my sleep doctor next week so he can hear some things from him to try to help him understand. I am at a loss as to how to get through to him... I have brought articles home for him to read but he never seems interested. He knows I post on here and has looked around a little but still does not seem to get it. Our relationship is still so new and I am shocked that he has stuck around through all this and am hopeful that one day he will get this....

I guess I am just hoping that I am not alone that others have had a hard time getting their significant others to understand but were able to break through eventually. Or maybe give me another way to address this with him. Any advise or input would be nice to hear.....

#2 Saraiah

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Posted 20 June 2010 - 02:58 PM

Hi Stacey,

One of the most useful things for me with my significant other was getting together with other PWN. I started a support group almost a year ago (actually a very easy thing to do), and my husband came to just one of our meetings. It was extremely helpful for him (as well as me!) to hear other PWN talk in person about how narcolepsy affects their lives. He and I were both much more able to seperate me as a person from the symptoms of narcolepsy - to really understand, for example, when I have no memory of a conversation (which happens every day) that it is not deliberate or due to a failure to care.

There are a number of things that I do or have done to try to increase the likelihood that I'll stay alert when I'm talking with my husband or whomever, and that I'll remember what was said later.
  • One thing we do is take walks when we need to talk - even if it's only 2-3 minutes walking back and forth in front of the house while we chat. The physical activity helps me to stay present.
  • When my alertness is really poor, I get out my SmartPen (a digital pen that links recordings of what you're hearing to what you're writing), and take a few notes of the important things I need to remember. When I was having an incredibly difficult time remembering anything at all, I made a routine of reviewing my little recorded notes from the past few days each night and morning, which helped a lot. Another way to do this is to use the digital recorder in a cell phone to record voice memos, or just carry a little memo book and get your significant other to help you evaluate whether you've written the most important details at the end of each conversation.
  • I bought a football quarterback's "playbook" to wear on my arm on days when my memory is completely hosed. The "playbook" is a lycra sleeve that slides over your forearm, and has a soft plastic "window" on it under which you can slip a small piece of paper. When I've no hope of remembering what I need to do that day, I'll write a reminder of what comes next and stick it in there. Since my arm swings into my field of vision every minute, it serves as a repeated reminder of what I'm supposed to be remembering. And yeah, it's an announcement to the general public that there's something odd going on, but I got to the point where I just didn't care about that anymore. Some people respond by becoming friendlier, oddly enough.
  • I've become compulsive about adding things that are scheduled to happen to my calendar, because if I don't do it right away, there will be no hope of my remembering later. Like all those school sports and meetings and carpools for those three kids of yours.
  • For a cheap dry erase board, I bought a big framed picture at the thrift store, and replaced the picture under the glass with a piece of white paper. You can write directly on glass with dry erase markers, and it will later easily wipe completely clean. I've got it on the wall right in front of where I generally sit in the house, and anything that I'm supposed to be doing or remembering that day goes up there in big letters.
  • Another thing I've done sometimes is to ask my husband to set aside 15 minutes during the day at a time when I'm most likely to be alert, and spend that time with him either in person or on the phone, checking in.
  • I've also tried to switch everybody's expectations around. Rather than expecting me to be alert all the time in the evenings after work, I try to be around in the mornings before people are on their way out the door, and set up family stuff to do together early in the day on weekends.
  • Some day I'm going to scrape the money together to buy a treadmill for my house, in the hopes that I could walk there while talking with family, watching DVDs together, etc. Since taking a walk outside can be impossible at lots of points during the day, I want to bring the walking inside.

Since people with narcolepsy have intermittent attention and memory problems that are, on their faces, somewhat similar to those of people with disorders like ADHD or post-concussion syndrome, I've found a lot of useful suggestions for managing in books written for people with those other disorders. There are a LOT of different strategies that one can use, many more than these few.

I really knock myself out to try to do what I can to be present to my husband and kids. The narcolepsy makes me unable to do that well many times every day. But the facts that 1) sometimes my strong efforts mean I AM successful, and 2) that my family sees me doing everything that I can to overcome the effects of the sleepiness and exhaustion, buy me a lot of grace - and makes a lot of good stuff actually happen in my relationships with them. It's so hard, and deeply unfair that PWN have to deal with all these problems. But the coping efforts are really worth it for me, anyway.

You've got an extraordinarily full plate as a single mom with 3 little ones, and a crappy disease to cope with, and a boyfriend who doesn't have enough information to really get it yet. I'll be thinking about you, hoping that you find some ways that work for you to make things easier.

All the best,
Saraiah