Episode 4: Can't trust your eyes (completed)

So the awesomeness that is narcolepsy does things to your mind that the best drugs around wish they could do. The dreams that I have are so vivid and real that it seems like reality, that is part of the problem. The other part is that when you are awake you have hallucinations, ain't that great too. So lets recap this, when I'm a sleep I feel awake and when I'm awake I hallucinate like I'm a sleep. It is so enjoyable to never really know if what you have experienced was real or a dream. Do you know how quick this can make someone crack up? I was so messed up before I knew I had narcolepsy, I was on the verge of taking myself to a mental hospital and being committed. I told you I was my own special version of crazy. With all this going on it's bad enough by itself then you add the falling, the excessive tiredness, my body constantly aching, and brain fog. I was pretty tore up. I don't know about you but when I'm in a rough spot I turn to my family for support. Looking back at the situation and seeing how they huddled around me and kept me from going over the edge, I'm so thankful, the only thing I can think of that I would do different is, I probably would not have divulged so much information about my condition to my family. As you probably notice my family likes to pick and play around, call names, and generally mess with each other. We all seem to have this sadistic side that thinks pain and violence co insides with humor, as long as its not done to be mean or harmful. Having said this you can only imagine how I was messed with when they found out I hallucinated and thought my dreams were real life. Overtime I would remind my wife of something she said, she  would say "babe are you sure I think your narcolepsy is acting up." It was a never ending joke, if you didn't like what you told me just  change it, what could I do. I thought I was bat  crap crazy anyways, why not mess with me, I  know I sure would have, if this had been one of  them. Well eventually I started keeping a  notebook so that I could catch them in a lie and  that ended that reign of terror. With that nipped in the bud, I still had to deal with the hallucinations. The worst ones were always the same and freaked me out at first, but you know my saying "laugh it in to submission". The first ones I really noticed happened at night and always appeared in the same places, in my  bedroom of all places. I know right, my cave of solitude, my haven of softness, how dare they. Well they dared, I would see a little boy and a little girl sitting across the room from one another dressed in old fashion Sunday best attire. Now some of you believe in ghost , me on the other hand I believe in Jesus. Not that  you can't believe in both, but that's not for me  to decide. Back to my new little friends, they  didn't move, speak, nothing, it was almost like  looking at a 3d   pictures, one on one wall the other on the opposite wall. How can you fix this with laughter, I mean they come at night, they are in my room, it is dark, and they look like the should be in some horror movie to warn you about something ominous in your house. I did what came natural and decided to name them. Cletus and Lupita, my little friends, why those names?  Well its funny to me when they appear to say "oh my goodness Cletus and Lupita you scared the crap out of me." How scary can it be with names like that. With that mess dealt with I started thinking of how to combat my craziness of the man on the porch. At the house I was staying at there was a long porch that ran three quarters of the lenght of the house. My favorite chair sat opposite the window that looked out onto the porch. While I would read or watch TV I'd see the man's figure walk up and down that covered porch. Here again people are going to reference ghost, my wife believes in ghost and from earlier post you can see she's not the best judge of natural stuff much less the supernatural. So I had to do some thinking on who and how could I keep this hallucination from winning the battle for my sanity. I mean the odds are already  stacked against me, with my family pulling hard  on the "one more and we get a floor at the nut house to our self." So first I needed the who, the wife drew the short straw but I decided otherwise, and why not that double scoop of padded room material was on edge already from the kids. Adding this to that rocket's fuse would be all it would take to send it just high enough to explode its psycho neurotic rage all over me, no thanks. Then I came to the  teenager, he's young and has to do what I say,  why not pay him back for the times when if it were not for child abuse laws and Zoloft he would not have survived. You might think I am exaggerating, I'll let you be the judge. The teenager, lets call him "Huh" for the time being. Huh as I said before in other post likes to make noise, and not good noise if there is such a thing, but annoying, drawn out, horrid noise that make you want to shove pencils in your eardrums. Then there is the bodily noises, not only are they loud and smell like burnt hair plus burnt plastic put inside a dead skunk set on fire and put out with chitilen(pig intestin cooking) water, they are frequent. Huh has more gas than the middle east, and its not like he excuses himself to do this, no he does it right near you, long and drawn out, sometimes it sounds as if he is changes gears midway through. Another fun fact about Huh is this brain mouth filter thing or the lack there of in his case. I stopped letting him use the phrase "stupid question" before his random out burst that involves a question but the question is not about any conversation anyone there has had that day. You see how Huh adds to my insanity and that's just the tip of the iceberg that is Huh. Well to make me feel better and to get Huh out of his own little world, plus he was grounded and sat under me like an extra hemorrhoid just being a pain in my rear. Every time I saw the man on the porch walk by, I'd tell Huh to go tell him to get off the   porch and laugh my butt off when Huh would   walk to the door open it and tell the invisible   man to get off our porch like he was really   there. See there are solutions to every trail you   face some are hard some are easy, but only you    can find a way through. Try to at the very least   to grin and bare it, and if you can laugh and   share it. You might give someone else that little   push to help them on there way.                    #narcolepsy #cataplexy #sleep

Episode 3: Falling is funny

When my narcolepsy/cataplexy first hit me, it hit hard like a weight watchers convention going to a buffet on cheat day. I would just be walking and all of a sudden fall, and I don't mean stumble and catch myself, nah that would have been manageable. When I say fall I mean hands at my side and timber, whichever way my body was leaning. Everything goes into slow motion and your looking at the ground trying to get your hand, arm, pretty much anything that can brace you for impact to move, and your bodies like ha ha think again. The hilarity of this, at least to my sister is she got to give me a new nickname "Baby Tumbles". So now not only do I fall randomly but my family also think its hilarious to use my new nickname enough to where my kids start calling me Baby Tumbles. So with this new trick of mine in my life, I have to start making sure I have something that is stable enough near me to help myself up. Cause not only do you lose all muscle control, you feel like you just completed a marathon. Going along with me needing something to help me up, apparently my sister is not that sturdy, it doesn't help that I am a big guy either. One of the times she tried to help me up, in between laughing at me, we both take another tumble and end up laying in the floor cackling. Most people have an emotion tied to cataplectic attacks, me not so much. The only emotion that I can think of is stress, it does make my symptoms worse, but I'm a parent when am I not stressed in some way. This emotion would make sense tho because my sister, wow, she really know how to bring the pain in that category. I love her to death and think the world of her but there are times that if I wasn't on meds I'd be writing this from behind bars. She likes everything nice and neat, which is great, but she is only gonna straighten it up once or twice. After that she is going to start the nagometer and slowly tear away at your soul with it, till a little part of you dies, usually its part of your sanity. Luckily my cataplexy attacks would hit me part way into one of the tirades and she'd flip her crazy switch off and come racing to my side concerned for her baby brother. See she's not all bad crazy she has her good crazy side too. I just got to find out which voice in her head make that side come out, just kidding, my mom is gonna fuss at me for that one. Speaking of my mom, her reaction to me falling was concern followed by bursting out in laughter after she saw I was fine. She is my Inspiration to keep pushing myself, the person I can talk to and know she is gonna listen and try to understand. The voice of reasoning when I am completely turned around and upside down. She has her own set of health issues but she keeps her house spotless, her family fed, her grand kids happy, and all the crazies from having complete meltdowns. Whats bad about all that is she is starting to develop some of our tendencies. What do you expect she's been doing this for my dad for 33 years. Well while talking about my dad I guess I should give how he deals with my situation. I have the best dad ever, and that's not me blowing smoke that is the truth. He is the epitome of manly, with the compassion and heart of a saint. He cares about me and my family so much it almost runs him ragged. He didn't finish high school, but he has the know how and drive to do pretty much anything. The only downfalls my dad has is that he is a lunatic sometimes. Not like mean and hurtful but like making random noises, not under your breath mumbles no I'm talking shout and yells. This does not bode well for my cataplexy, because sudden excitement can trigger an attack. Which brings me to his other issue, no matter how many times me or my mom tell him about the different symptoms of my narcolepsy, he forgets them two seconds later then freaks out when I have an attack. Then he'll baby me for the rest of the day, which I'm not complaining about, and worry him self into a tizzy till he goes to sleep and resets. I know it sounds like we might be two  scoops short of a banana split but that is how  we make it lots of laughter, at myself and at my  family. No one is hopeless or worthless, the  only person that can stop me is me. If you feel  like you have no one to lean on or no one to  help you, go out and find someone to help or  be that shoulder to lean on. It just might make  you a little stronger, and help you forget about  your issues for a little while.                 #narcolepsy #cataplexy #sleep

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