What is the source of your joy?
August 17, 2008 11:54am
A message for all those who would hear...
Goal Completed on Aug 3, 08
elKabong
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About Me
elKabong
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About Me
I've struggled with narcolepsy for 20+ years, and I can't remember what it felt like to stay awake naturally. While the meds do help, they simply can't eliminate the daily attacks. Of course, this is supremely frustrating, as the things that I truly enjoy (music, study, intellectual and creative pursuits, etc.) are most adversely affected in that they so often involve sustained focus and concentration w/little physical activity. I often have to put in an incredible amount of effort - more than most folks - to get things done. Most people don't see this and simply don't understand. Imagine being intensely involved in some task, you know - "in the zone" - such that you effortlessly tune-out everything else because you're in your element, doing what you love. You're mind is razor-sharp, and you sense that you are cruising along making amazing progress. Suddenly, you feel yourself slipping; and, in a few moments, you're focus shifts from the object of study to the act of studying itself as you fight like hell just to rub two neurons together. As you look in front of you, what had been the most interesting and captivating piece of music, literature, etc. just a few moments earlier has become mere unintelligible ink on a page. You see the notes/words, and realize what they are; but, for some reason, you just can't make sense of them - it's like you're receiving the signal but your brain stalls just short of processing it. That's kind-of what it's like. Now imagine having to repeatedly explain this to employers, professors, etc. who just don't/can't 'get it' because they see only the surface of someone who looks otherwise 'normal'. Yeah. Discouraging, depressing, all that... I've learned to deal with it over the years, but; sometimes it just really gets to me. SOOOO... in spite of the seemingly insurmountable challenges, I just finished my degree in guitar performance; now I'm trying to figure out where to go from here.
I've struggled with narcolepsy for 20+ years, and I can't remember what it felt like to stay awake naturally. While the meds do help, they simply can't eliminate the daily attacks. Of course, this is supremely frustrating, as the things that I truly enjoy (music, study, intellectual and creative pursuits, etc.) are most adversely affected in that they so often involve sustained focus and concentration w/little physical activity. I often have to put in an incredible amount of effort - more than most
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Interests
Music, theology, stimulating conversation, techie-stuff (I'm a let's-take-this-apart-and-see-how-it-works kind of guy.), historical philosophy... I'm fascinated by language, and would probably learn several more if I had the time. I'd like to learn Gaelic (cuz it's just so weird w/all those consonants - or maybe it's just the Celt in me...), Latin (great for historical studies), Greek & Hebrew (for deeper biblical understanding)... you get the idea.
Music, theology, stimulating conversation, techie-stuff (I'm a let's-take-this-apart-and-see-how-it-works
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Recent Activity
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Journal
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Lame format...
August 6, 2008 4:06pm
Does it bother anyone else that you can't create paragraphs in the 'about me' section of the profile?
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It's official
August 4, 2008 2:33pm
Just heard back from the advising office. I was right - there IS a glitch in the computer-generated degree progress report. Apparently, it happens …
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It is finished!!!
August 3, 2008 10:42am
Or, at least, I presume so... I'm still waiting for the official word from the advising office. There seems to be some discrepancy on my …
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Home stretch
July 26, 2008 3:39pm
Gotta crank-out a couple of papers today and I need to go see two live gigs and report on them this weekend. Kind-of difficult now that the car is …
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Photos
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Goals
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Support Groups
Close Narcolepsy
Diagnosed at age 16 and it completely turned my life upside-down. I've fought like hell to claim some kind of life for myself over the years through various treatments, depression, jobs, relationships, self-confidence issues, etc. and all but gave-up for a while. I took an opportunity to go back to school, and just recently finished my degree. It's been a difficult road, but my faith has been strengthened along the way, and God has been so good to provide all that I need.
Treatments
- Cylert Somewhat Helpful
- It's been a long time since I used this one. I only used it for a short time, and I don't remember it ever working very well. Nevermind the concerns about liver failure...
- Dexedrine Working / Worked
- I took the sustained-release form, and it just seemed to be either too much or not enough - like the buzz-crash effect after too many caffiene energy drinks - there just wasn't much of an even-keel middle-ground for me. That said, I'd take it over Ritalin any day if I couldn't get Provigil.
- Provigil Working / Worked
- Works well. This stuff is light-years ahead of the rest of the treatments for narcolepsy. Now, nothing's perfect, but this stuff is as close as we're going to get these days.
- Ritalin Working / Worked
- Yuck. It worked ok, but... I don't know how to describe how it made me feel other than... "yuck".
- Xyrem Working / Worked
- The Provigil+Xyrem regimen is [IMHO] the best treatment I've ever had. I used to have terrible problems sleeping through the night, but this stuff makes all the difference in the world and is probably the only way I'll get recuperative sleep.
Open Depression
Treatments
- Support from Friends & Family Working / Worked
- Wellbutrin Working / Worked
