FDA's Narcolepsy Patient-focused Meeting - Your Input Wanted!

The FDA is conducting a narcolepsy patient-focused meeting on September 24th, both in-person and via the web.

Why is this important to me, you ask?

This meeting helps educate decision makers at the FDA, and will shape the future of narcolepsy treatments.

Narcolepsy will only get more attention and better treatments if all of us give our input and show that not only do we need better care - we are willing to do what it takes to get it, too!

Unite Narcolepsy is spearheading the initiative, and is inviting both people with narcolepsy AND their loved ones to participate in an anonymous, confidential survey to capture the variations in patient experiences. Your input can help capture this very important information!

Every little bit helps! Please take a moment to contribute your information toward this very important opportunity to get our collective voices heard.

Working, narcolepsy, and life

First, I want to apologize for having dropped off the face of the blogosphere. This post will explain why, if you bear with me.

Second, I wanted to share with you all that I have come to the realization that a typical 9-5 office job is no longer something I am capable of having over the long-term. I've also realized that I want to go back to school for a computer science degree. Computer programming is something I've not only a newfound passion for, but something I can do from home.

Third, the reason being for this is that the demands of an office job are simply too much for me to handle being a person with narcolepsy. This is why.

I simply cannot tolerate the stimulants that are given to most people with narcolepsy. Auto-immune disorders and their symptoms are exacerbated by stress, and stimulants can exaggerate the stress response, and even lower the stress threshold. Xyrem helps with the excessive daytime sleepiness, but I still find myself struggling to maintain mental clarity and focus during some parts of the day.

Like your typical office, we suffer from the 10% of the workers doing 90% of the work affliction. Guess who is in the 10%? Yup, yours truly. My supervisors have me doing the work of 3 people. And no matter how hard I try, I can't get things off my plate without having new things added. Worse, normal people could probably handle this, and would do so by simply adding more work hours to their day. But I can't do that. Why?

Here is my typical day.

6:30-7:30 am: Wake up. This time depends on how stressed out I am, and how well I slept that night. Early is good, later is usually a bad sign.

8:30-9:30 am: Arrive at work. I have a hard time being able to be in by 9, but I'm lucky that my office is somewhat flexible.

8:30-10:30 am: Spend a couple hours easing in to work, clearing the cobwebs of sleep from my head. Mornings are not my strong suit, so I use them to catch up with whatever's landed in my inbox.

11:00 am ish: Eat lunch at my desk because I use the half-hour I get for lunch to take my nap. Even though the federal government recognizes my disability and accommodates it to a certain extent, I must use my lunch time for naps. If I go over half an hour, I must use my own vacation time to make up for it.

Somewhere between 12:00 and 1:00 pm: Head starts to get fuzzy, concentration goes out the window, I get cranky and listless. This means it's nap time. I go downstairs to the small clinic we have at work, set up the cot I have been allowed to use, and hope that I can generate enough body heat to fall asleep in the frigid clinic within the half-hour allotted.

Half an hour later: Wake up and go back to work.

2:00-5:30 pm: This is the most productive time of day for me. I'm at the peak of alertness, and I get more done during this block of time than the rest of the day combined.

6:00-7:00 pm: Arrive home from work. Honolulu traffic can be atrocious sometimes. I usually focus on taking care of dinner for myself and my family as soon as I get home.

8:00-9:00 pm: Either go to the gym, or do some chores around the house. My boyfriend has teenage kids, and it gets a little crazy around here. If I'm lucky, I get enough time to pack myself lunch for the next day.

8:30-9:30 pm ish: Start getting ready for bed. I shower at night so I can get ready faster in the morning.

No later than 10:00 pm: I'm in bed, and I've taken my Xyrem.

1:30 am: Second dose of Xyrem.

6:30-7:30 am: Wake up again the following day and do it all over again.

Where do I have ANY free time in here to give to work? All my hobbies have pretty much laid in neglect. My friends are constantly hounding me because they never get to see me. I can't sacrifice sleep, because to do so would mean endangering my health.

When I lose even an hour of sleep, my immune system suffers. The one and only time I've gone to bed 2 hours late, I was out sick for 3 days afterwards because of it.

Can you see my dilemma? The delicate balancing act I perform every day? It is draining, and I'm losing the battle. I have no vacation time on the books, in fact, I'm in the red.

My boyfriend is away for work for a little while, and being the single parent to his teenagers is an additional stressor that I bear out of love for him and the kids. They are awesome people, but still teenagers, and it's not easy having to keep after them to help around the house, or do their homework, or even just communicate with me.

I'm not losing the battle with narcolepsy though, I just need to change the battlefield. Going to college as a 30 year old is going to be interesting to say the least, but thankfully, I have the GI Bill to help me pay my way through. It's going to be tough losing that income, but it's not something I could have kept anyway. I can't live in fear of change.

I can live in gratitude for the support I have in my family and friends, and I can live in hope for the future.