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Re: For your kind consideration:
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1. How old are you?
I will be 24 this summer.
2. what age were you first really troubled by symptoms of n and c?
I think it was around 17 that I really started noticing, but I had trouble with my sleep/wake cycle as long as I can remember. My mom knew this and just thought I was lazy or something-- never sought help for me. It was my last year of high school when the trouble staying awake in class happened, I remember I fell asleep for the first time in a history class, I startled myself when I realized I had done it, never had before!
3. what are your top 10 symptoms (go down from the most disabling) as you live with them day to day?
The weakness I get from being tired or having anxiety is a problem, I pretty much look like I'm drunk-- I slur, I can't walk, I really just have to sleep it off. The cataplexy is what has made it hard to work and maintain school. I used to manage the sleepiness with sugar and caffeine, but now I have ritalin to help :) It really does. It still makes maintaining everything I want nearly impossible though... one step at a time though, right? The inability to concentrate makes me frustrated and takes its toll on my studies especially. Losing time, having sat at my computer for hours when I thought it was only moments can be bothersome... and managing to get from point A to point B especially in a car without realizing I have gone anywhere is kinda scary. I can't really think of more stuff right now except for the general mental fog I'm usually in- hard time to remember, etc.
4. what work do you do? or did you do? I used to cashier all through high school and then a bit in college. I did workstudy too. I do workstudy now, again, for about ten hours a week. I'm so glad I have such a supportive and understanding boss.
5. city/state? Bangor Maine :D
6. family situation? I am married and share an apartment with my husband's best friend (for now). We're looking to move close to campus soon. We have three cats (my babies), two ferrets and a very old gerbil (about 6 years old haha)
7. family history? (not just history of n) I am adopted and recently met my birthparents. I guess my birthfather was diagnosed with N about five years ago (according to his sister, who raises my brother) and my brother on that side is beginning to show some symptoms at 16... we don't know for sure, but they're gonna get that checked out. My two sisters are nine and five, and nothing has been mentioned about that, luckily. My birthmother lives nearby but isn't ready for a relationship either so I don't see her or my two brothers on that side. My parents raised me in Millinocket, one hour north of here and I had a very happy childhood there. I have two (adoptive) brothers who are younger than me, we grew up very close. The youngest was one of my best friends for a long time. They both get bad migraines, the youngest is being sent home from the Navy right now because he apparently wasn't completely cleared. My mom and dad are wonderful people, both school teachers... I had my dad for three years actually for technology and CAD.
8. milestones and events, good and bad? Milestone would be getting on Dean's List last Spring and getting an academic achievement award this spring. Going from having to drop out a few semesters from the N to getting straight As makes me happy. Milestone two would be my medicine working so well and reaching the month mark of not having to miss work this week :D
9. if there was one thing you wanted to be known about your life as a person with narcolepsy, what fact is that? Perseverance. Keep going even when it feels like there's no hope, because eventually things can turn around. There's always more to look forward to.
10. is there another thing you want known? let 'er rip. Stay positive... it's so hard to do, but positive thinking is my number one medicine. That, and be as active as possible. Exercise naturally energizes you. Even for only a few moments a day, just get moving. Go out when the sun is shining. Find something every day that makes you happy and do it... my number one is a nice bubble bath :D