What it feels like to have Narcolepsy

This is from a speech written by Edward Renaud, and presented to Congress & the National Commission on Sleep Disorders Research.

"As a teacher, I would like to give a short lesson in practical things you can do to help you understand Narcolepsy. As an experiment, try all of them for a week."

"You may wish to try:

1.) To learn about disrupted nighttime sleep, set your alarm for every ninety minutes and stay awake for 10 minutes each time it goes off.

2.)To learn about daytime excessive daytime sleepiness, alternate suggestion one with periods of 48 hours without sleep. If you fall asleep accidentally in those 48 hours, start over again.


3.) To learn about living with Narcolepsy, explain it to at least 2 people each week. Politely ignore responses such as "I get sleepy sometimes to," or "I know someone who had that but they were cured." and "I'm sure you will get better soon."


4.) To learn about cataplexy, collapse on the floor (not moving for several minutes) each time you are angry, scared, surprised, laughing or upset. You can eliminate this symptom if you can live without these emotions.


5.) To learn about excessive daytime sleepiness, sleep for 1/2 hour before you drive anywhere, sleep for 1/2 hour when you arrive, sleep for 1/2 hour before you leave for home and sleep for 1/2 hour when you get home. That's 2 hours extra for any trip, but it's worth it as you may avoid getting lost while driving, being lost i stores and falling asleep during work or social engagements. You will eventually learn to avoid going most places, you won't have the time.


6.) To learn about Hypnagogic Hallucinations and Sleep Paralysis, have someone tie you to your bed, gag you, then have a friend phone you, pound on your door, scream your name, set off your smoke alarm and break down your front door. You won't be in real danger, but you'll start to believe you are.

Thanks to Kat of the Southpawcats for lending this info!!!!!!

Invisible Bracelet Medical ID

The Video Says it all. Visit InvisibleBracelet.org for more information!

Visit msnbc.com for breaking news, world news, and news about the economy

The Spoon Theory: by Christine Miserandino

THIS IS A GREAT WAY TO EXPLAIN THE EVERYDAY HARDSHIPS OF SOMEONE WITH NARCOLEPSY, OR ANY OTHER CHRONIC DISORDER.

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

A bit of Narcolepsy Humor...Kind of...

YOU MIGHT HAVE NARCOLEPSY IF...

...the first place you look for missing items is the refrigerator...

...you often wakeup with strange indentations in your forehead (like the keyboard)...

...you remember 100% of the material you studied...but forgot to go class for the final exam...

...you begin a phone conversation with "Hi! Wait, did I call you or did you call me? Who is this?"...

...your side of a conversation mostly sounds like "I was...um...wait, what was I gonna say?"...

...you see a spider on your wall and envy his ability to move...

...you realize the spider on the wall is a figment of your imagination...

...people tell you to sit down before they give you GOOD news...

...you've never seen a full-length feature film all the way through...

...you've watched all your DVDs 100 times each, and still don't know how they end...

...you make your husband check for monsters under the bed and in the closet before bed...

...even though you were told it's just a story, you still believe Sleeping Beauty was real...

...you have more than an hour delay for memory retrieval...

...your wallet contains a card with a list of 250 "Reasons I'm Late For Work Again," plus one for leap years...

...you have more than 3 post-it notes on your bathroom mirror and one of them says "Don't forget to read your post-its"...

...you have ever forgotten your own birthday (or how old you are)...

...you've ever felt like you were in a time machine being transported two hours into the future at a time...