Knight Solstice

The Interview (34-year-old married male)

Name, Sex, & Age: "Knight Solstice", Male, 34	Family stats: Married, one child
Website: None	Twitter: None

1. How do you support yourself (If employed, what type of work do you do and what is your work schedule)? I work in retail, full-time, mostly day shift (8 -4p).
2. Have you ever been diagnosed with narcolepsy by a doctor or did you self-diagnose? Doctor
3. When were you diagnosed and what were you diagnosed with? 2008 – I was diagnosed with narcolepsy w/cataplexy and mild sleep apnea.
4. What is your score on the Epworth Sleepiness Scale? (If you would like to get your score, click HERE). My wife's score is normal (6). Mine is 22.
5. When, if ever, did you first realize that something was wrong with you? Explain.It was 2005, the year after I got married. My wife had had enough time to observe my sleeping habits and realize that something was really wrong.
6. Was your diagnosis a relief, a surprise, or a disappointment? To be honest, it was a surprise. I didn’t know that much about narcolepsy. To help myself understand it, I just thought, okay, what I have is the opposite of insomnia. I’d always just thought that my tiredness was part of my personality or the result of a poor diet or something.
7. Have you ever had a sleep test? What was it like? Yes. I was surprised by how quickly I started dreaming when I fell asleep. The room was surprisingly comfortable. With all the wires hooked onto me, I didn’t think I’d be able to fall asleep. In reality, I had a hard time staying awake long enough for them to even do certain tests. At one point, after my required 2^nd nap, they had to come into the room to keep me awake.
8. Does anyone in your family have a sleep disorder? No, not that I know of. I think my mom has sleep apnea, though.
9. In what ways has narcolepsy negatively impacted your life? It’s caused immense marital strain. Being tired all the time has numbed me emotionally. Anything unpleasant – getting excited over things that are unpleasant too often - makes me very tired. Being excited in any other way triggers my cataplexy. I don’t know how else to explain it, but when a person is really tired, everything they do centers around when they can lay down and go to sleep. I could stay up ‘till 6am and talk to 100 people, but everything is focused on when I can go to bed. Having narcolepsy – I’m already prone to being depressed and narcolepsy can bring that out. I’m not an anxious type of person, but one of my medicines brought that out.
   When you’re tired, you don’t care.
   With narcolepsy, the dreaded anticipation of being medicated for the rest of my life can weigh heavily on my hope to function normally – just to be happy. I don’t wanna take medicine for the rest of my life!
10. In what ways has narcolepsy positively impacted your life?I’ve been able to develop a laid-back demeanor. I’m more deliberate and observant. On good days – which may be few and far between – I prioritize a lot more. I do what needs to be done. If it doesn’t get done, then I don’t do it, because I’m tired.
    Being diagnosed was a surprise, but it was also a relief. I thought it was just me. It gave me an explanation for why I’m always tired. It helped me want to make better use of my waking hours.
11. What aspects of narcolepsy bother you life the most? The automatic behavior is downright scary because I have a pretty long commute. There was also an incident at work where I was able to complete a task and not remember ever doing it. Waking up, gasping for air, feeling like I’m choking is even scarier.
    The thing about narcolepsy is, even if I can sleep, the time I spend having unproductive sleep could be spent playing with my daughter or reassuring my wife of my love for her.
    With the hallucinations – the only time I have them is when I’m driving. It sounds funny but when I’m tired and on the road, it’ll look like the road curves but it’s actually straight. If I didn’t have meds, it would be very scary.
12. How do your family and friends feel about your illness? Everyone other than my wife may not understand it fully, but they do have concern. I don’t know. My family, it’s somewhat of a relief to them too, because they know now why I’ve been the way I’ve been in the past.
13. How do you cope with knowing you have an incurable illness? I cope by focusing on my spiritual health. My wife helps me cope a lot.
14. How does narcolepsy affect your romantic life? Adversely! It causes me to be very selfish – emotionally selfish.
15. How does narcolepsy affect your parenting and/or work skills? It affects me in that I do have to take frequent breaks. If I’m not careful, I can get very irritable or moody. But other than that, with the parenting, I do my best not to let that affect how I treat my child.
16. What medications have you taken for narcolepsy? What do you currently take? I’ve tried Provigil, Adderall, and currently I take Nuvigil.
17. What lifestyle changes have you made to deal with narcolepsy? I’ll have to get back to you on that one.
18. Do your medications or lifestyle changes have any side effects? The current medication I take does give me headaches. That’s pretty much it.
19. If there was one thing you could get someone who doesn’t understand narcolepsy to understand, what would it be? I would get them to understand the need for frequent breaks and that having caffeine is not helpful. I can’t just drink a cup of coffee and be fine. I will get sleepy again.
20. In a perfect world in which you would not have narcolepsy (or any health problems) what would you like to do that you can’t do now? I’d enjoy a good night’s sleep – as much sleep as I’m supposed to have. I’d sharpen my focus on my wife’s needs. I’d really enjoy time with my family. I’d enjoy the freedom of not being sleepy all the time.
21. Is there anything else you want to say about narcolepsy that wasn’t included in this interview?
    The other bad thing about narcolepsy is the lack of counseling for those who need to make life changes to cope with it. I also don’t like the negative media stereotypes. Like Beetle Bailey always being asleep in a tree... to me it's not funny.