YOU MIGHT BE A NARCOLEPTIC...... - If you've never finished anything you started - not even a sentence. - If the phrase "rest home" sounds like heaven. - If "let me slip into something more comfortable" generally means sweats. - If the lights go out in your office every 5 mins ever since the management had motion detector sensors installed. - If your mood rarely matches that of your environment. - If you praise yourself every time you remember something before it is too late. - If the people at your church think you're very spiritual because you spend so much time with your head bowed. - If you change your pajamas twice a day because you get so much use out of them. - if the last place your husband looks for his clean clothes is in the closet or the dresser drawers. - if you say "now what was I saying?" over 10 times a day. - if you get up to go to the bathroom and halfway there forget where you were going. - if you can fall asleep on a roller coaster. - if you need naps more than your toddler does. - if you have to constantly ask someone "did this actually happen or was I dreaming?" - if you are absolutely positive you paid that bill, you remember it vividly, you can even tell what check .. and everything only to discover that the check is still in the book and there is nothing on it. - if you can eat dinner and five minutes later have no idea what you just ate or if you ever did. - if your Brita pitcher has only had a half an inch of water in it for three days becuase you just don't have the energy to 'make' water. - If, in elementary school, your SAT scores started saying "post high school" in the 3rd grade, yet you were still being tested for special ed. - If the justice system has ordered you never to appear as a witness for the rest of your life (all those false 911 calls - "Yes! You've got to help me! There's a tall Caucasian man in my room with a knife and a rubber ducky! He's...oh never mind. He vanished."). - If "Huh? I'm sorry, what did you say?" is part of your regular vocabulary and you're not hearing impaired. - If you've ever said "I'm so exhausted, I need a nap" and your spouse replies "you've only been up for 5 minutes". . .or if the statement "I have so much to do right now I'd better go to sleep." makes perfect sense. - If you've ever been so tired that you can't sleep. - If your TV only has commercials. - If the first place you check for missing items is the fridge - If 2 + 2 = 22 makes sense to you. - If you remember 100% of what you studied in the textbook and forgot to go to class to take the final exam (you could swear you had class on Thursday, not Wednesday). - If one of your regular weekend chores is searching your house for randomly misplaced items. - If you answer the phone with "I um yeah um hello? Did I call you or did you call me?" - If your side of a conversation consists mostly of "And then...wait, I think I was...what was I going to say?" - If, when you see a spider on your wall, you envy his ability to keep moving, but realize he is probably really a figment of your imagination. - If you have a clock on every wall in your house and all of them are purposely set ahead to different times so you'll always think "It's time to go!" - If you have a 10 hour or more delay on memory retrieval. - If you have memorized or carry in your wallet a list of "Why I'm Late for Work" excuses for 250 days of the year plus one for leap year. - If you have to put lunch on your "to do" list. - If you've trained your dog to turn on the coffee maker, pull the covers off you in the morning when your alarm goes off, and prod you into the shower. - If you have more than 3 sticky notes on your bathroom mirror daily and one of them says "Don't forget to read your sticky notes". - If you've forgotten your own birthday. - If you feel like you're trapped inside an invisible time machine that thrusts you forward in time in random 2 hr spurts. - If "NIGHT is to DAY as SLEEP is to ____" sounds like an unsolvable riddle. - If you function better when you are under the influence of amphetamines. - If you can fake people out that you're bilingual by reciting the names of your medications. - If you can remember to call your doctor, but you can't remember why. If Santa Claus hits your house around noon on Christmas because that's when you're most likely to be unconscious. YOU LIVE MY LIFE AND I'LL LIVE YOURS by Lisa Hare Before you judge me or criticize me to all, Live my life for a week and then see if you have the gall! It irritates me, so I'm aware it must others, Narcoleptics struggle to be understood by their mothers! Just stop and think, just for a minute, How difficult this life would be if you were stuck in it. Nobody wants to waste half their life asleep, Being alert and active every day are only memories I keep. I'd love to live your life, just for one week, You live mine at the same time and then call me a freak! Try it, go on, be brave, and have a go, I'd love to be the first to say "I told you so". I'm not boring or lazy or stupid by default, A cure or a remedy for years I have sought. I'd pay any price to have the energy that you do, My house would be clean & polished, my car would too. To take my children to the park, first requires a nap, If we stay just two hours my energy will sap. I'm tired of disappointing them, I'm tired of it all, If I could just be normal for a day, I'd have a ball. Falling asleep in conversation is just SO embarrassing, Being home alone and isolated is much more my thing. "Have I passed it on to my kids" is my biggest fear, They are my everything and all that I hold dear. It would kill me to think I had cursed them with this, For them to have a full and happy life is all that I wish. If you think I can change this, you are terribly wrong, None of us can fight it, no human is that strong. It's out of my control, I'm helpless to beat it, While depression looms like a deep, open pit. It won't pull me in because I'm not alone in my nation, There are thousands like me, living a life of limitation. We reach out to each other, offering love and support, Feelings that more of this world should be taught. Despite all we suffer, a sense of humour we keep, I'm going to pause now because I must have a sleep! We laugh at ourselves and at each other too, Before we get laughed at by people like you. Trying to be understood is our life-long struggle, while family, friends, jobs and sleep we juggle. We can't cause you any harm but falling asleep, So your undeserved criticism you can keep. If you don't like what you see then simply stop staring, Instead use the time to learn to be more caring. If you want to understand us and know what we are, We are rare and more compassionate than many, by far. Always taught not to laugh at those less fortunate than myself, To appreciate how lucky I was to have good health. To offer help to others and always have empathy, are the tools that I use to live with narcolepsy. I rise above it all to offer you some advice, If you think it could never happen to you.......you'd better think twice! God and Jesus are my rock. My family is also awesome! My husband is a precious gem of a sweetheart. We began dating in high school (8yr. ago) several years before I onset with N and C, etc. Well, the gentleman he is, he stuck it out like a trooper, when I began to onset, before I knew what was wrong, through all the SP, crazy HHs, cataplexy, and chronic sleep attacks. He understands N so well because he actually listens to me, instead of forcing his own explanation for my Symptomology. Last June 11 we married and he is great. We had waited so long to get married because he wanted to be able to get a job with health benefits for me. Tragically ironic, in September, his employer cancelled major medical insurance! This year has been hellish in terms of accessing affordable health care (poor clinics, Prescription Assistance Programs, etc.). The system in America is sooo very messed up! I can't drive or work, so it’s hard to feel worthwhile sometimes. However, Kenneth is so wonderful and reminds me how special I am to him that I feel better. Kenneth and I lived between my parent's house and a Motel 6 for the entire month of April 2006, because our crazy upstairs neighbors threatened us with violence. They thought that we were the ones who complained to the apartment that they have an unauthorized dog, a pit bull over 20 lbs., and making a muddy mess by pouring water over their balcony daily. We never complained about them, ever, but refused to believe us. The man waited for Kenny to get home from work and threatened him by saying,” If we get anymore complaints, I'll be out of jail, before you're out of the hospital!" We immediately called the apartment and the police. After the police left, he angrily yelled, "Wrong move, now I'm gonna get your A** !" Needless to say, we were freaked out and decided to hide out at our parents for a few days. We'll take the rest from there. The hateful ignorance which poisons so many is appallingly needless and nerve-wracking! Well it seems we have no choice but to move, yet once more since December! We simply do not feel safe at Hunting Ridge and are looking to purchase a home in the DFW area. We don't know how we are going to physically and financially afford it, but we need to, so please pray and offer any help you can for us. No more fluff, life sucks right now! I really wished someone would help us get a safe place, but we will have to manage and risk it for now. Imagine ... Now Open Your Eyes to Discover It's Real! Part 1 Current mood: depressed Category: Life Imagine you're in college, tasting independence for the first time in your life. You're an awesome student, an exceptionally intelligent and hard worker with a keen savviness for social issues. You're able to finally drive and go wherever, whenever you like. Still, there isn't much of any time for true fun if you want to keep up your grades and reputation. You pull several all-nighters each month just to prepare for class and exams. You're one of those everyone expects to provide an awesome and meaningful contribution and inspiration to society. Far beyond your physical age in level of maturity: intellectual, emotional, and spiritual, the average coed activities of your peers seem completely juvenile and unproductive to the matters of the real world at hand. You take your first job working as a lab assistant, but your boss and coworkers always catch you often fall off you're stool in a sudden attack of sleep. You may work for only 3 to 4 hours each weekday, but you are seemingly constantly stuck in a never-ending prison of sleepiness all day long. Now, it's the year 2001, you're a Junior in college, a week after 9/11, and you still cannot fathom how someone would not only be willing to commit suicide, but also kill hundreds of innocent others who have little direct control of their government all in the twisted name of your religious beliefs. You have nightmares each night: feeling the burning pain of fire and fear of atomic world warfare. Many times you hear it, the intruders in your home; the whispers, footsteps, and the tinkering with your door knobs and opening windows. Many times you see them; black shadowy figures, and feel them torturing you. Meanwhile, you are paralyzed unable to move, speak, and terrified for your life. What the crap is going on, you wonder as you are shaken and often literally shaking in a seemingly endless trap of terror. No, you cannot cry out for help or run away form the stronghold of sleep paralysis and hynogogic/ hypnomyoptic hallucinations. A month later you begin to feel the oddest, most uncomfortable sensation in your knees when you laugh or feel angry. It's like you feel your knees giving out, wobbling like you're going to fall down as the sensation of pins and needles sprouts throughout the lower portion of your body. So strange, you fret what could be wrong, but have no earthy idea what the crap could be sucking the health and livelihood of your youth from you like some demonic parasite. It's December, and now your body often goes into a complete body collapse of conscious complete body paralysis, much like a puppet having its strings cut. Please, you warn your family and friends, don't tell me any jokes, I will have cataplexy. You try to explain to prepare them, but nothing can prepare you or them for the ridiculously dramatic panic they go into when witnessing cataplexy, esp. the first couple times. They're like, what kind of fool word is Cataplexy? You fall asleep while opening Christmas presents, riding in and driving a car, watching TV, and even during discussions. By this point in your hellish disaster, you discover online that cataplexy is indicative of Narcolepsy and that you have its life destroying full tetrad plus of symptoms: Excessive Daytime Sleepiness, Cataplexy, Sleep Paralysis, and Hynogogic/ Hypnomyoptic Hallucinations. Not to mention the other lesser symptoms Automatic Behavior, Disrupted or Fragmented Nighttime Sleep, and Chronic Fatigue. It's the finding an insurance policy that covers sleeping disorders and a doctor willing to order a sleep study that's the even more challenging problem. Our future sister-in-law is 5 1/2 months pregnant with our niece. We saw her last night at Cody's 5th birthday party in Desoto, TX. What breaks my heart the most is knowing that I really shouldn't ever have children, especially naturally due to my Narcolepsy, because I have a much heightened (8 X's More) chance of genetically passing down a sleep disorder with excessive sleepiness, 2 times more likely for Narcolepsy, and due to the severity of my symptom I must always remain on drug therapy. Due to the nine medications I must take daily, their combined tetrogenic effects on an embryo/fetus could be potentially devastating. Its really depressing being a Narcoleptic, no one, not even your family (rarely) comes to see you or help you. I'm 25 and can't drive, I can't even go outside. Thank God for Kenneth and Nephews! I would definitely rather be dead than have to live with out drug therapy or Kenneth.