Soma

Sorry for the "Brave New World" reference, but since the word also refers to sleep, I thought it was a good title for today's post.

If you have never read Huxley's novel, you may not know that "Soma" is the fictional drug that makes everything better with no side effects. 

Every time I talk about taking a nap or being tired, people ask me, "Doesn't your medicine work?" And every time I explain, "Yes, but it's not perfect. It doesn't cure Narcolepsy, it just helps a lot. Plus, I still get tired like everybody else." 

I am not sure why people expect me to be instantly "normal" as soon as I take a pill. No drug works perfectly. Even when I read BNW in high school, that was my first criticism of the book. No, I can't imagine a pill that fixes anything perfectly. That's part of the reason that most medicines need to be taken repeatedly.

Not to mention the fact that Narcolepsy and hypersomnia are not well-understood. Scientists don't even know what causes them - especially in my case, that's why my extreme sleepiness is called "idiopathic." Why do people expect that my life would be perfect with this pill?

I know this is probably not true, but sometimes I feel like people say things like that because they think it's not a real problem. Like they think its a made-up disorder or that I am just lazy. Perhaps the real answer is that they don't know how intense these disorders are. Maybe since they have never experienced it, they have no way to know exactly how strong the symptoms are.

In any case, the diagnoses, treatment, and continuous education on the subject have definitely changed my life for the better. I used to come home from work at 4:00pm, fall asleep, wake up around 8:00 or 10:00 for 2 hours, go back to sleep for the night, and have a great deal of trouble waking up for work before 6:30 am. Every single day was like this. Except the weekends, then I would replace working with more sleep. I knew I was sleeping my life away and there was nothing I could do about it. Now I sleep 8 or so hours per night, nap a few times a week for about 2 hours each, and otherwise actually live my life. This result is nothing shy of a miracle to me. 

So, I may not be cured, but at least I am better enough to actually be living my life! I can now have an active social life, the quality of my work is improving, and I can actually see the floor of my room. That's good enough for me!

I'm tired tomorrow...

Last Friday I was asked to help someone out on the following Saturday. I responded with, "No, I'm tired." 

The person gave me a funny look - "Get some rest tonight, and you can help tomorrow." To which I responded, "I'm tired tomorrow."

To most people, "I'm tired tomorrow" makes absolutely no sense. But to me, it made perfect sense! 

I am tired every day - that's no surprise. Most days I make it through just fine. Sometimes I get so tired that my brain seems to be a little glitchy. I will feel like I'm dreaming, become clumsy and forgetful... Usually I can prevent this by going to sleep at a decent hour, but sometimes even that doesn't help.

Occasionally stress will cause me to be overly tired. Most people recover from extreme tiredness with an ordinary good night's sleep. It's not the same for me. Every so often, I can feel the kind of tiredness coming on that requires an entire day (24 hours) of rest - most of which is sleep. Without that, the extreme tiredness persists endlessly, making me cranky, weepy, and altogether a mess.

I am starting to become more aware of the feeling that indicates I should sleep a day away and "reset". So feeling like "I am tired tomorrow" is no joke. 

The school year just ended, and this is exactly how I feel. Luckily, it is Saturday, so I plan to take a nap lasting at least 4 hours. I am hopeful that will help! Otherwise, I am definitely tired tomorrow.

Fun with Narcolepsy! (Quote Edition)

Yesterday, I was decorating my bedroom with this really adorable art that I found (DeGrazia).  I was using frame-type things that were like those vinyl decals that stick to the wall.  Pretty cool (butchandharold.com - I don't work for them, they don't pay me, but I really liked their sticker frames).

Anyway, since one of the vinyl stickers has dry-erase qualities, I decided to write a quote over the bed:

"The best way to make your dreams come true is to wake up."
-Paul Valéry

I know that might mean something different to people without sleep sidorders, but to me, it encourages me to get out of bed when all I want to do is sleep.

That's the only quote I have so far.  Anyone else have inspirtional quotes for those of us who are extra-sleepy?

(Blogger Side-Note)

I just discovered that I don't always receive an email when people write comments.  I apologize for my extreme delay in responding to your comments.  Now that I know, I will have to check with some regularity, which is a challenge, because my iPhone doesn't get along well with comments.

Also, Please forgive me if I missed a comment that you wrote.  Hopefully that won't happen anymore.  Thanks for your patience!

The All-Nighter...

All-nighters are different for those of us who have sleep disorders.  All through college, I wondered why I was the only person I knew who had never "pulled an all-nighter."  I could never stay up for an entire night studying.  As a matter of fact, my roommate used to joke about my studying consisting of opening up my books and falling asleep instantly.

Surprisingly, this wasn't far from the truth.  Reading is one of the easiest ways for me to fall asleep.  I have found that if I have insomnia (which is torture for people with narcolepsy), all I have to do is pick up a book, and by the third page, I can't keep my eyes open.

Unfortunately, this poses some problems for a student.  If my automatic response to reading is falling asleep, studying becomes nearly impossible.  When I was working on my Master's degree (which I graduated with officially last week), I tried everything to read those long books originally written in another language, translated into English poorly.  I would spend all day at the school's library - far away from my bed.  I would go somewhere where I knew the AC was way too cold.  Or I'd have soda and snacks with me, just to have the stimulation to keep me awake.  It didn't usually work.  I almost always fell asleep anyway - I'd find the couch in the library, give up, and snuggle into my sweatshirt, or even fall asleep sitting at the desk with my face on the textbook.  Back then, I had not been diagnosed, so I didn't know what made me different from everyone else.  I just thought I was weak or lazy.

Anyway, it occurred to me the other day that I have pulled all-nighters, but when you have a sleep disorder, sometimes it takes a different shape.  I am now a teacher, and I stayed up until 1:00am grading papers when I had to get up at 6:00am the next day.  For me, this is an all-nighter.  Normally, if I am up until 11:00pm, I am exhausted and non-functional the next day.  Staying up until 1:00 made me practically delerious.  For me, that was an all-nighter.  For most people, they wouldn't think twice about staying up that late once in a while.