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.

Episode 5: Insomnia, are you freaking kidding me?

How in the world can someone that is pretty much tired all the time have insomnia? Welcome to the absolute psychotic world that is my life. You fight sleep all day and when you finally get to go to the place your body has yearned for, the absolute utopia you have trudged through this day filled with sleep attacks that have drained you like a teenagers cellphone battery, you lay down and bam, you can't sleep. Your laying there, beyond tired, I mean like stay awake for two days and drink a bottle of NyQuil, beyond tired and you can't fall a sleep. It is a vicious cycle of excessive tiredness and can't switch your brain off, then when you finally fall a sleep you wake up every couple of hours and the cycle begins again. It is beyond me how and why my body plays this sick joke on me. You would think that after dragging myself through a day of complete and utter agony pushing myself past the bounds of complete exhaustion, my body would shut down before I hit the pillow. Most people sit in bed on the computer or phone, catching up on the days general events. Not me I turn my phone on vibrate. Shut off all lights, LEDs, anything that has a glow. My room is pitch black, and I lay there with everything off except my brain. That daft thing in my head starts running through the last 29 years of my life. Things that have nothing to do with anything pertinent in my life to date. It literally makes me want to have a primal scream fit of rage and crack myself in the head with a roofing hammer. I get so tired mentally that I tell my doctor about it and guess what they have a medicine for insomnia. Well not just insomnia but insomnia and rem sleep problems which is why narcoleptics are so tired, even when they sleep "normally". My body goes to dream mode pretty quickly, 5-7 minutes. That's like charging your phone till the red light stops blinking then getting right back on it. Most people don't go into rem/dream sleep for sometime after they fall a sleep, like hours after. So to help me not dream so quickly and also to fall a sleep faster there is a drug. But not any ole drug this stuff make NyQuil look like koolaide. Its a syrup that you dilute and it taste like seawater, but it puts you down like giving benadryl to a baby. So for 2 to 6 hours you don't dream you don't wake up, your out cold. This seems healthy right? This is just a long line in the stuff I have to take to be a functioning human being for 4 hours of the day. Oh the madness, but the best thing ever has happened to me and its because of narcolepsy. I now have the opportunity and more ambition to spend with my kids. I only have those limited hours of not being a zombie to really focus toward my children's upbringing and well being. My challenge to you is to really think about what is the most important things in your life and make time to spend on them. All the wealth and fame in the world will fade  but love and charity go along way.

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