The Punch Line Of a Narcolepsy Joke

Frustration

Lately, it seems that narcolepsy has been affecting my body in ways that I have yet to get used to. On Saturday I celebrated my birthday. I took several naps during the day to ensure that I could stay up later than usual and hang out with my friends. I had a great time! I stayed up until 2 am, longer than I had stayed up since starting the Xyrem regimen.

I paid the price the next couple days. Sunday I was incapable of doing much but laying there and recovering. Monday morning, I was still so tired that I had to call in late to work because I was not rested enough to drive safely. The cataplexy also made it difficult to walk, and my knees almost gave way several times.

My life now revolves around the necessity to sleep. This is a fact that I can not afford to ignore. It just frustrates me to no end.

Help us bring Sleep Disorder and Sleep Health Awareness to the White House!

The Obama administration has added an interesting new capability to the whitehouse.gov website - the ability to add petitions. I am petitioning the Obama administration to raise awareness of sleep disorders and promote sleep health in America. Please help me by signing the petition!

https://petitions.whitehouse.gov/petition/raise-awareness-sleep-disorders-and-importance-sleep-health/hQgWnNqM

If you have narcolepsy, insomnia, sleep apnea, shift work sleep disorder, or just want to be able to give every day your all but can't because of society's demands on your time, this issue directly affects you! Let's work together to get a good night's sleep for everyone!

I swear, I'm not stupid...

Some days, having narcolepsy and working is one of the most frustrating things in the universe. Today was one of those days.

As of this writing, I have been waiting for a place to take a nap for over 3 months. So the daytime naps that I'm supposed to take haven't been happening. This makes the afternoon a difficult time for me at work, but our leadership likes to schedule meetings at this time, so I can't just sit idle.

Imagine for a moment that you haven't slept in 24-48 hours. How are your cognitive abilities at this point? Probably similar to when you are drunk. You would probably forget things that you normally have no trouble remembering, right? Absolutely! If your colleague told you they hadn't slept in that long, would you blame them for not being able to perform at 100% capacity? Certainly not.

As I went and did a dry run of a brief I am supposed to give tomorrow, I start to get very sleepy. As I finish, I can't remember the name of the person who is supposed to go after me. My boss gives me a quizzical, slightly disapproving look that says he expected better of me. I don't want to sound whiny or make excuses, so I just sit down. I sit through the rest of the brief, trying desperately not to fall asleep. Finally, the meeting ends.

I find the colleague who went after me, and apologize for forgetting him. He gives me a sarcastic "Sure you are." and walks away. I am positively mortified. I wish there was some way to show people how tired narcolepsy makes me sometimes. I wish people would stop giving me weird looks when I park in the handicapped stalls because of my cataplexy. I almost wish I had an illness that others could see so that people would better understand.

Days like this only strengthen my resolve to continue to write in this blog. Continue to raise awareness in any way I can.

I will.

The Science of Sleep - article by The New Yorker

I was reading this article this evening, and it makes so much sense to me.

Our society as a whole supposedly places a high value on productivity, but proves itself wrong when it alienates normal sleep hygiene. I have been advocating an adult nap time modeled after the Spanish siesta for years, because it actually increases productivity!

To that end, look at the Google campus and the way they run their company. High-quality, free meals on demand. Gyms and nap areas on site. No mandatory work hours. On-site healthcare. And Google is one of the most productive companies in the United States.

I think we should all take a page from the playbooks of Google and Europe. Bring back nap time!

Being in class is pretty awesome!

I'm pretty happy this week, because I am taking a work-related class. The best part about it is that I'm only 5 minutes away from home! So, during my lunch break, I have been able to go home and take naps. It's such a wonderful feeling! I can't wait until I actually get a place to nap at work!

When you sleep well...

...it's amazing the things you can do!

Things that other people take for granted every day.

I can wear contacts. I couldn't before Xyrem, because I would be too tired to remember to take them out before falling asleep.

I can pick up around the house a little bit every day, instead of taking one whole day to clean just one room. Sleeping well and avoiding caffeine gives me a constant level of energy throughout the day, instead of fits and starts.

At work, I can focus on one task, and manage my time effectively. This got me nominated as the Tradecraft Superstar for the month of February! Just two short months ago, I was terrified that I was going to lose my job because of medical absences and falling asleep at work.

I can start paying attention to my hobbies again! I had been so exhausted just trying to make it through the day that all the hobbies I love fell to the wayside so that I could survive. I'm not just surviving anymore. I'm living.

America does not value sleep the way it should. We reward those who rob from themselves, and give their time, energy, and life to work. But this is a classic example of robbing Peter to pay Paul: the only one who loses is ourselves.

This sacrifice is not necessary! In fact, by taking care of one's self, we are able to contribute more to society than we would if we stumbled around every day in a haze of sleep deprivation fueled by caffeine binge after caffeine binge.

Next time you feel the urge to deprive yourself of sleep for something that can in fact be done later, stop yourself. You can do it tomorrow, and you will do it better, because you will be doing it with a clear mind and healthy body. And if you can't? Ask yourself if it is really worth taking from your future to pay for the present.