Episode 2: Reactions and Reality

  I was diagnosed with narcolepsy and cataplexy in September of 2012. Narcolepsy for those who have not seen or experienced it in their lives includes, excessive daytime sleepiness (EDS), sleep hallucinations, non restful sleep, possible sleep paralysis, cataplexy (lost of muscle control, like fainting with full consciousness, eyes open but can't talk or move), brain fog. The closest thing I can relate narcolepsy to and its still not that close is staying up for 2days straight then chugging a bottle of NyQuil and trying to function for the rest of the day while doing your normal routine. Basically it stinks. A narcoleptic may or may not have cataplexy, I have it but know people who don't. Cataplexy is the fun one, not really, cause there is nothing like laughing to hard or getting stressed out and falling in the floor. You know whats fun about it is that you see yourself falling and you can't move to brace yourself, call for help, or anything, fun right? This might sound like I'm a Debbie downer but I just wanted to let you know ahead of time what struggles most narcoleptics face. Some have worse problems and more symptoms than I have listed. But like I said in my previous post, you can't let it beat you, and if all else fails try to laugh it into submission. I try to laugh at my predicament, but most of the time I laugh at the reactions to my narcolepsy/cataplexy. Like when you tell someone you have narcolepsy and they're like "oh so you sleep all the time" hahaha that's hilarious. I wish, but when you got 4 boys aged 16, 8, 7, and 3 even at night when your suppose to be sleeping you don't have time. Usually cause one of them, most of the time the teenager (aka the one who makes me wanna beat my self in the head with a bag of hammers), forgot he had a 57 page project due tomorrow and he only has 2 pages done. He has to have magazine clippings, pictures, 10 pages of research written up on 6 different subjects, all typed and prepared neatly. This would be great and fine if you would have known about it when he was suppose to start it 7 weeks ago. So yeah that's gonna be goodnight sleep. Or when my 3 year old falls a sleep for 20 minutes right before bedtime, that's just enough time to recharge him so he can keep you up till 3am. Then you would think "he's a stay at home dad, he can sleep late with the baby",oh that makes me chuckle. The problem with that is ,I have 3 other boys and 2 of the listen to their mom as good as I listen to a vegetarian on how to cook my steak (not at all). So she has to come wake me up at the but crack of dawn to make the twins mind and not wake Mater up, that's usually unsuccessful. So yeah I get to sleep a lot, right? Another reaction I get well not really a reaction more of a generalized assumption is "he's just lazy needing naps, having to use the little carts at the store, using a wheelchair". Honestly I might get to take a nap once a week and that's like hitting a beehive with a bat. I go to bed with everyone calm, cool, and collected, I wake up to my fiance ticked off, I mean on the verge of needing a padded room. The twins have destroyed their room, the hallway, the living room, pretty much anything that was neat or anything that can light the rocket of madness their mom keeps stored up inside her, for just these occasions. Along with this baby hulk has decided that he doesn't like the way our 70 pound pit bull looks and is trying to pull off his ear, lips, tail, or anything else that protrudes off the poor animal. Luckily the Pitt loves him and lets him do whatever he wants, but still this is grading on his mom's edge of sanity. Then there's the teenager, aka I hear everything you talk about that's not my business and blurt out random comments that have nothing to do with the conversation, but I can't hear you call my name when I'm 3 feet from you. That kid is tapping, beating, singing, pretty much anything that can add to the noise and madness. Then there is my beautiful, amazing, wouldn't trade her for the world fiancee, she is the best when i nap, in the kitchen cleaning or sitting in her chair reading or doing homework. The whole time yelling right by the door to our bedroom, "y'all better be quiet your daddy is sleepin","Mater knock it off stop hurting the Pitt" ,"hey tapper, hey TAPPER, HEY TAPPER ANSWER ME NOW". "SORRY MOM I COULDN'T HEAR YOU I'M IN THE BATHROOM"( aka his favorite place in the house, the kid literally camps out in there for hours). Back to the fiancee, "I'm gonna go wake your dad up if y'all don't be good". So yeah I get a nap, in between the squealing, the banging, and screaming. Then I get to wake up to that lit fuse and tiptoe around the rest of the night trying to keep the nuclear missile from launching. See the perfect environment to nap and wake up in. So naps are usually out of the question. Then there is the stares I get from using a motorized cart at the store or a wheel chair cause I'm lazy. Honestly I feel like crap having to use them, the stares only make those people look ignorant. Narcolepsy is a very debilitating disease, it stinks but I don't want people to pity me. I just want people to have understanding for others that have diseases that are unseen. I feel like  wearing a sign that say "I'm not lazy, the store  doesn't have a crane to pick my big tale up  when I fall in the floor from a cataplexy attack".  This is the tip of the iceberg of reactions, just  remember it could be you or someone you  love with problems out of their control. Have  compassion, don't be to quick to judge, and for  those with non visual diseases keep your head  up and be an inspiration for others to lean on.  #narcolepsy #cataplexy #sleep