Monday, April 28, 2014

Episode 8: I'll be okay just let me lay here for a bit.

        In the 29 long years of my life I have come to the conclusion that I'm not getting any younger. Wow, I know a real revelation, right. Tell you what, I still surprise myself sometimes, it makes me feel like a real rocket surgeon when I get these sparks of genius. Back to my epiphany, we all know what goes along with getting older, that horrible four letter word PAIN. You know how you use to make fun of your dad and his friends when they were grunting and groaning after some labor intensive task and how they were sore and stiff. Now I always knew that the age of pain would eventually sneak up on me but I thought  I'd be in my forties by then if not older. Well no dice, that horrific four letter word rings my bell on a daily if not hourly basis. That's another thing about narcolepsy, the non restorative sleep coupled with exhaustion and fatigue causes your body to just ache and be sore all over.
     I remember when I was a younger, nothing could stop me, or even limit me. Now if I don't watch for the signs that I'm near my limit, not at it or over it, but just near it. Boom I hit the floor like a big redwood falling. It blows my mind how quick I went from 20 and unstoppable to 29 and elderly. Some times I get depressed and think why did  I get this disease. I'm still young and have alot of things I need to accomplish. I don't have time to be tired, I got 4 boys that need an active and present dad to help them find their way into manhood. So I push through the sleep attacks as best I can, I try to be alone or atleast in a place where no one will notice when I have a cataplexy attack. I don't want them to see me struggle, it's not their burden its mine. That why when my little buddy told me about how he'd take care of me it put me on the floor emotionally.  It came from my 8 year old aka speedy  a daddy's boy through and through. Let me set the scene for you, I had the twins and the human hormone with me in my Jeep headed home and the conversation turned to who was gonna take care of me when I was old.
    Like any other self involved teenager good ole "head in rear boy" says "I'm moving to California so y'all can't live with me." That's pretty good I feed, clothe, and shelter this walking odor factory cause that's what the law requires. But not only do I do that I buy him things, show him affection, try teach him things, and I even go so far as to not beat or kill him for all the junk any other  normal human would have done him in for. Here's some examples of things I think he should be tack hammered in the head for: #1 incessant blurting out ( The kid acts like he has touretts, I'm not making fun of that disease when I use it to drive a point home. Sometimes its a word sometimes just a random noise. Most of the time its a random fact he supposedly knows, which 98% of the time is wrong, and not only is it wrong, it is beyond dumb and not even part of the conversation we are having. #2 an over abundance of bodily noise (you probably think I'm referencing his robust flatulence supply, nope what I mean is his ability to turn himself and mostly everything around him into an object of annoying racket for which to drive me even more crazy. #3 complete lack of focus and attention.( I always heard teens are spacey and kinda float around oblivious to their surroundings. But this kid is slowly destroying any hope I have in him surviving after he moves out. I don't know how he makes it through school without going outside and walking straight into traffic. What's worse is I visited the school he goes to and have seen alot of the other kids, and it's scary how most of them are just like him. The level of self absorption in these kids is staggering. At that school you could fill the main hall with poisonous snakes, let the bell ring, and at least 40% of the kids there would walk right tge snakes and be bitten. What's more hilarious is guess who would be right in the middle of them, yep, the walking hormone oblivious that he's surrounded. The only positive about this is at least all the snakes would die after bitting him from all the germs he collects in him or on him.
    Sometimes this kid is amazing. He does his chores without being told to. He'll even do other stuff he knows we like done without being prompted. That's when sit there and wonder did it happen, did he finally grow out of this stage of making me wanna beat him and myself in the head with roofing hammers. Then the other shoe falls and wham he reverts back only this time its worse. But his mom and I keep pushing through just trying to make it to 18 so he can move to California and it'll be their problem then. Lol.
      So the teenager doesn't want me, no surprise, I still got my little athlete speedy. He wants his daddy to live with him. What this kid lacks in intellect he doubles up in athletics and undying admiration and love. That's why it killed me to hear him tell me about how he was going to take care of me. I love the fact that he wants me to stay with him and be around him but he also said something that really knocked me right in the gut.
    My little buddy said "daddy when you come live with me you can sleep all you want and take a nap whenever you have an attack." Wow, its hard even to write that. The kid is almost 8, does he really think that's what I do all the time. I know he is more inclined to focus on me and how I feel, but in all honesty is that his image of me. I know I can't help being tired or rundown but I try not to show it and have really tried to limit myself to only 2 or 3 naps a week and then its when he is in school.
     I sat there, driving, trying not to let him or his brothers know how bad that made me feel. He wasn't saying it out of meanness, it was one of the things he thought I liked doing a lot. Really though it hit home at how my kids see me and how I thought they saw me. My idea of myself in my kids eyes was that I am Super Dad not Sir Napsalot. Well there is always a silver lining to any situation. Take a minute or two and write down what you think of yourself and how you spend your time. Then ask the people that are around you the most, what they think of you and what you do a lot of. You might be surprised at some of the responses. I sure was but at least now I have an idea of what I need to try harder at. So my kids see me in a better light than just the guy who sleeps all the time. Now I can strive to be Super Daddy. Remember there is always someone watching you, you might not see it but they are there and looking for something. Try to give them something good they can hold on to, instead of something negative that will only be burdensome.

Sunday, April 20, 2014

Episode 7: Waking up to go back to sleep.

It has come to my attention that this post my sound mean or hurtful toward my wife and kids. It is not meant that way and my family reads and approves my post before I publish them. This is meant to be funny, they all laughed at it and did not want me to change a thing. Hope you enjoy.

My not so typical morning...

At 6:30 my alarm goes off,  I don't know why its my alarm I don't have to get up my wife and older boys have to get up but its my alarm that goes off. The truth is I know why its not her alarm, because apparently my wife doesn't know how to set her phones alarm, or at least that's what she says. I bet if candy crush had an alarm clock setting level she'd know how to set her alarm. Well what does she do? She lets the guy with narcolepsy  set the alarm and make sure she wakes up.
      So I turn my alarm off and shake my wife to get up. I am rewarded with the growl of a ferocious grizzly bear, that is about to kill an unwanted pest for waking it from hibernation. She finally vacates her position in dreamland after my sixth attempt to rouse her. The reason I make sure she gets up is because if I fall back a sleep and let her and the boys be late, it's gonna be a long day of the nag-o-meter chewing on my butt, like pittbull on a bone. As she trundles from her refuge of down comforters, I nod back off but its just a nod for I know all to well the beasts of instant chaos are being awakened. That is when my house fills with psychotic hysteria mixes with non medicated adhd children of devastation, like a Walmart right before black Friday begins.
      With all this calamity unfolding right outside my bedroom door, I try to sleep, between ignoring the yelling and screaming mostly from my wife, the beating and banging coming from the twins of destruction, and finally with out fail the living gas chamber, meandering into the living room, farting and sneezing like an old beat up car skipping and backfiring after it has not been cranked in years. Which makes me wonder as I lay there, what is this kid's deal, its like he confines himself to his room all night consuming anything that is partially edible that would increase his flatulence, body odor, and mucus production. Then storing them up for him to release this homemade, bacteria tainted, vomit inducing, poisonous gas into my living room. Its as if he is an alien that has to spew pollutants in to the air, to change the atmospheric toxicity level to make it more habitable for itself. By more habitable I mean make it smell like a mix of rotten cabbage, decaying skunk, and burnt plastic. Which must be the fragrance he has for rooms air freshener. I thought when we bought the plug in scent things it would help to put one in every room, and it did everywhere but his room I think the thing either killed itself from over work or from not being able to handle the stench. Back to the living room with it full of this chemical nerve agent, the green fog starts seeping into my room getting sucked into my cpap and finishes destroying the tiny bit nasal senses I have left.
   All this anarchy culminates with the human fogger coming into my room to tell me my sweet, little, triple scoop of  psycho, lollipop of a wife is on the edge of murdering one of our precious demons and she needs me to bring my dragon of wrath and sleep deprivation personality out to corral and motivate the little neurotics into getting ready quicker.
     After spewing fire and threats of annihilation at the little life drainers, then shoving the kids and my wife out the door, I drag myself back to bed and try to erase the morning events and pass back out. Only to be awaken by the 3 year old either laying on me, or at the very least touching me. Now when I say touching me you might think aww he's got his hand on you, or his back against you snuggling , he must really is love you. Hahaha you are as wrong as drag queen at a Billy Graham crusade. He is sprawled across me, either hitting, kicking, or digging one or more boney limbs or digits into my back, stomach, or face. Ignoring the pain I lay there trying to get some sleep, as a battle commences between baby bam bam and I. The battle is over space in my king size bed. Bam bam has decided that since I have left the bed it is now his, the whole thing, and will only allow me to have a nine inch section to lay on. You would think I could just push him over and have more room, I use to try this but he's got his mom's morning demeanor. So I huddle in my alotment of bed and fall a sleep. Usually this is when I drift into that hard good sleep.
       That last for a good bit, then the wild one starts to stir. First its 'Dada I want some tea", I lay there trying to fake sleep praying it goes back to sleep, to no avail he calls again "Dada get up I want more tea". Still I lay there begging God to make him fall back asleep, that's when he takes matters into his own hands. He grabs my cpap mask yanks it back and lets it go, so that it hits me in the face so hard it makes my eyes water. Guess what I got up.
    This is just the start of my day. But you know what, atleast it's another day. I'm alive and have another day to share with someone to encourage and help them. Always remember even if you wake up worse off than when you went to sleep, you still woke up. Their must be someone out there that needs you in some way. Otherwise what would be the point of this life. Let it be all about you helping others and not about only just you.

Monday, April 14, 2014

Episode 6: Dr OZaphobia, Oh no, I do that too.

If you think you have a disease or illness you should consult your doctor. Don't watch Dr Oz and diagnose yourself or Google or Webmd your symptoms, go to the doctor. Keep in mind emergency rooms aren't free but they will see if your dying, before they will bill you. The reason I say this is the more I talk and share what it's like to have narcolepsy with cataplexy, the more I have people respond in these same ways."I haven't been diagnosed with anything yet but my problems are way worse than being sleepy" Or "I do all that too, do you think I have narcolepsy?" or I get "I don't think I have narcolepsy but do you ...?" The ... represents some random off the wall thing like "my big toe twitches 6 time, then I sneeze and fart 2 times each and get sleepy". You probably think I'm joking but a good bit of that scenario was an actual question I was asked. Don't get me wrong I am very appreciative when people ask me questions, I'm glad they want to know. The thing is, first I'm not a doctor, second narcolepsy can manifest itself a couple of different ways to different people, and third why in the world would you divulge crazy information about yourself, that would make even your significant other would shake their head. I guess its cause I'm such a people person. (Read that in a voice saturated in utter sarcasm.) These people are fine asking questions, other than the mental pictures and the taste of vomit in the back of my throat, from where I threw up a little in my mouth. The second group of people are okay as well, my sister is one of them. I call them the Dr Ozaphobics. Its hilarious how easy they go from being fine and fully functional to I need to sit down, I think I caught what you have. Case in point, my sister is so susceptible to suggestion my mom will say vague health related comments and before long my sister is about to die. She can't watch Dr Oz because she either has everything or is afraid of getting what he shares on his show. These people aren't so bad to deal with, they're actually pretty funny to mess with. Its the first group of people that are my kryptonite, their the ultimate one uppers of despair. When I share the effect narcolepsy has on me, in a conversation, I try to do it in a non "woe is me" type of way. I don't want pity, I want awareness. Before my diagnosis I was looking for answers from anywhere. This disease is scary, especially if you have no clue you have it, or know nothing about the possible symptoms associated with it. This group of joy sucking vampires on the other hand, they not only want pity they need it. There's one Vampirette in my circle of relatives, I say relatives because if you knew them you wouldn't want to call them family either. This particular person is in my book the conductor of the pity train express. I try to not share anything about how I feel or what my day to day problems are around this person, my wife on the other hand I guess likes to see me suffer. Every time we see Vampy, my wife tells them all about how I am doing especially the bad stuff, then sits back and enjoys watching the life being drained out of me. I'm sure you have a person like this in your circles, or at least I would hope so. Unless God really has a grudge against me I don't think I'd be the only one blessed with this syphon of vitality. You are probably thinking of this person right now. That one person that when you see them you try to have as little of a conversation with as possible, then one day you let those famous last words slip out, "How are you doing." Then its on like a fat kid on a box of twinkies. You spend the longest 45 minutes of your life, hearing them tell you how sick and dying they are. Just standing there listening, not daring to comment, other than a "yep" or the occasional head nod. Knowing if you say anything else it will only prolong the suffering. The whole time hoping for a phone call, one of your kids to say something, anything to pull you out of their pool of despair as they bankrupt your soul of all joy and happiness. Finally they finish their dismal exaggeration of how their life is all doom and gloomy, only to leave you an empty shell of a human being void everything, and in a pit of hopelessness. See pure kryptonite, able to bring any person with ears to the brink of self destruction. I am not a heartless person, I try to have compassion for all, because you never really know what is going on in a person's private life. That's what bothers me tho, I know I talk about my disease but I try to not be all melodramatic "Shall this bitter turn ever be complete." Well maybe when I'm trying to get my Dad to baby me. From what I've seen this is also true for most people I meet that have health issues that take their toll on them daily. I guess what I'm trying to say is, if you focus on all the bad its hard to feel even a little good. Try to find anything in your life that makes your daily routine more tolerable, if not better. Then focus on it, don't be a syphon on others that are there trying to help. Life is hard enough as it is, try to uplift and encourage. Be a reservoir of hope and contentment in a world of decency executioners.