What is support? Everyone is looking for it in one way or another. But what are they looking for? Is there one size fits all type of support out there? In my opinion no and honestly that is a good thing. That means that you don't have to find that one place that everyone goes to. That means that maybe your support is just that one person that understands your plight and has a sympathetic ear. Maybe it is something more, but it is what works for you.
When I was first diagnosed my support was my wife. I did not know much or really anything about Narcolepsy and my first doctor painted a pretty picture. I left the appointment thinking things would easily be controlled. Alas he was wrong, but he was a good painter. As things started to go down hill my wife and I found some support groups online. Honestly my wife found more than me. These groups were not a godsend but they helped. You could at least see that other people understood what you were going through. In some cases you could share stories or have some small conversations. These groups are a good place but they have their limits. First of all many people with Narcolepsy are not going to be able to follow all of the posts and/or concentrate on them. Second, some of the conversations are out there, like any group there are fights, random discussions, etc. But they can help. I was also instructed to go see a counselor. I went to this counselor for a bit. Overall he was pretty good but I think that has to do with the fact that he has a rare disease himself. Overall we really just talked about my symptoms and how they affected me. Now I am a people person in general and I am pretty open with what is going on with my symptoms. So if anyone asked I would tell them what was going on. My wife also got some out of the appointments which helped her understand a little bit more of what was going on. The next support I received was a support group that I was able to attend in person. This was great because I could see others in person that have the same disease as me. We could share stories, ask questions, and sometimes just be goof balls. For instance we discussed adult coloring books for quite a while one day, this one pops up now and then. You can feel like a normal person just doing normal things. Plus the more you went the more you form friendships with these people. I was also luckily enough to be invited to a weekend retreat. At this retreat I was introduced to many people that had rare diseases. We were able to mingle, learn, and create friendships with many people. This retreat helped put some of my symptoms into perspective and really helped me understand that there are people that have it much worse than me. These people had to fight every day just like I did and they fought just like I do. I still communicate with some of these people and consider them friends. I truly hope that I get the opportunity to attend this retreat again as I felt it was a great expierence. I myself also find support in writing my blogs. I can share my story with others and hopefully help them. To me it is very helpful to receive comments that what I have written has helped others. To me it helps me to know that while I can not do everything that I have done in the past I can still do important things now. Ultimately my biggest support is my family. I have been very open an honest with my wife and children. I have not hidden anything from them nor do I plan to. While they might not be able to understand everything that I am going through they at least know what I am feeling. They know that I am doing everything in my power to do as much as possible with them. On the days that I can not do as much as I want they understand. They might not relate or understand everything but they know what I am going through. There is one last place I have heard is AWESOME, the Narcolepsy Network Conference. I hope to attend this year. But can our imagine being around hundreds of people that can truly relate to you. Can you imagine swapping stories with hundreds of people that not only care but really understand. The key though is just finding the support that works best for you. If it is one person that talks with you and simply listens, GREAT, that is what you need. If it is an in person support group, go with it. No matter what works best for you, stick with it. If one thing does not do the trick try another. There is not one size fits all answer for everyone, you just have to find the size that fits you.
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Well I finally got good news in my life.
Tomorrow I will be going to see a new Neurologist/Sleep Specialist at UW Madison. I really like to stay wth Dr. Freedom in Chicago but alas my insurance will not allow me. I have been fighting to even get in to see a new doctor at UW and finally I got in. It might have something to do with the fact that I actually sent a complete to the patient service group, but I don't care. I have not heard anything about this guy but I did find that he is doing research on hypocretin so he at least has some interest in Narcolepsy. I am hopeful that he can at least get the pre-authorization to go through for Provigil and Xyrem. The second set of good news is that my disability claim is moving along. A week from Tuesday I have an appointment with a doctor representing Social Security. I am not real worried about this as it is supposed to be a two hour appointment. As I cannot stay awake for more than a couple minutes with out putting in quite a bit of physical effort this will be a breeze. Seems strange but I am actually happy with these two pieces of news. Movement is better than nothing! As promised I will now finish up my three part trilogy, (I had to try to be funny!) on how Narcolepsy affects me.
The concluding episode covers sleep. Media portrays a person with Narcolepsy as a person that falls asleep while talking to you and someone that sleeps all day, all night, everyday. That is not really the case. I can fall asleep very easily but t is not immediate. It is very quick, normally within a minute or two of not enough activity I start to fade. My eyes will start to droop or close, I will fight it but they will close. My head will start to shake even more than it was to begin with. If I am sitting in anything other than a recliner I will start to sway front to back and side to side. If I am standing I will sway front to back even more. If I do not something very quickly I will start to crash. What this means is that there are very few things I can do without starting to fall asleep. Even the things that "keep" me awake are really only a mirage. I have to be completely engaged in them and even then I still fade. For simplicity sake, let's say that I give in and decide to go to bed. This can be an adventure in itself. Pretty much every time I go to sleep the moment I close my eyes start moving like crazy. The only way I can stop the movement is to open my eyes, alas that does not help so much in going to sleep. So I try to force them to stop, it never works, but I try... Next up, the majority of the time I start to dream even before I am sleeping, (strange as most times I am sleeping with in minutes). I can have multiple dreams before I fully reach sleep. There have been multiple times where I have opened my eyes, told my wife about a dream, closed my eyes to enter the dream again. I have also been basically sleeping in a car, but yet aware I was sleeping. For instance my eyes are closed and I am visually seeing the car I am in driving into a brick wall. BUT, I know that this is not happening because I can feel the car moving on the road, hear the sound of the highway, but visually the car is repeatedly crashing into a wall. The above are the good times going to sleep though. The bad times my stomach feels like it is resting my mouth and I want to vomit. I get shooting pains in my eyes, through out my body etc. I kind of curl up into a ball and hope I fall asleep instantly, (again it is minutes at most but it feels like forever). The next issue I can run into is that I will randomly wake up sweating buckets. My entire body is on fire. Of course I take he blankets off and I am freezing, (something about being all sweaty and a cold house). Cover back up and back to being hot. Again this only takes minutes but feels like forever. Then we have insomnia. Sounds odd, that a person that can sleep when ever has insomnia but alas I have that some nights also. Some nights I don't fall asleep in minutes, I can not fall asleep at all. I will lay in bed for what feels like forever. I can close my eyes and they will start moving but I won't actually fall alseep. I can change positions, move, whatever but not fall asleep. In most cases on those nights I am up into about 5am and then I start to crash. Other times I can make in bed until say 2:30 and back up until 5 or 6. Many times experience insomnia multiple days in a row. So now I have fallen asleep it is time to wake up in the morning. This has been an interesting trick lately. I might get out of bed but I am still basically sleeping. It normally takes me 1 to 2 hours to actually "wake" up. I literally have to fight to keep my eyes open and normally I lose that fight. I might get one eye open but it will close pretty quickly. Even with me fighting to keep it open, it will slowly close. I can see it gradually close, kind of like on a horror movie as the close out the seen and fade it out. Other times even when I fight I can not get them open. I can get my eye lids to start to move but not open. On top of that my legs are jello and my knees buckle at the thought of moving. I pretty much sort of open one eye, place my hand on the wall so I know where to go, and walk real slow so I can hopefully catch myself. My wife normally falls closely behind me to try and make sure I don't hit the floor. Once I get to my chair, I zombie out because I can't keep my eyes open log enough to do anything. Lately I get up for a second time around 9 and start the fight again. But at least this time I can normally win and get my eyes to finally stay open. Unfortunately with an hour or so I am hit with the overwhelming urge to sleep again, (not that I am every real awake before that) an urge that there is not much resisting. If I try to fight it I am about as mobile as I am when I first get out of bed.... WAHOOOO! So the media really has it all wrong in terms of how Narcolepsy affects my sleep. It is not all fun and games. The need to nap is not nice, it sucks when you have no choice. Narcolepsy is no joke, plain and simple! No matter how bad it might be, I still wake up each day! No matter how bad it is, I still fight the fight! Why? Because not fighting is not an option! Because I will not give up, there is to much to fight for! I have said many times that if something is worth having it is worth fighting for, (normally in terms of marriage but it applies here also). My wife, my kids, my animals, myself, my family, all of it is worth fighting for! I will continue to fight every day because Narcolepsy will not beat me! It might win a battle here and there, but it will never win the war! I went basically three nights without sleeping through the night. Two of the nights I was not able to go to bed until 5am and one of the nights I kind of slept until 2:30am and then I was up.
So yesterday once I was "up" for the day, around 10, I decided to not nap or doing anything to keep me awake, (no caffeine, nothing but what I ate for food). It was a LONG day, I was dragging all day but had to do try something different. Then when I went to bed I did not take my Baclofen. Low and behold I actually slept until 5am. By 7:30 I was back in bed until 10 but I actually slept through the night. So today no naps or anything extra to keep me awake and no Baclofen. Hopefully I get some sleep through the night again. I really need to string together a couple nights of sleep. My eyes are killing me. Not only are they burning, think when you did an all nighter and your eyes were on fire from lack of sleep. On top of that my eyes simply hurt. When I dry my face after showering even light pressure on my eye lids hurts. Sometimes when I look to far in any direction again I feel pain. My guess is that when I am sleeping I am not really getting out of REM sleep. I say that because pretty much the moment I close my eyes, they start running a marathon. They move in every direction almost like I am trying to track 30 toddlers in a play ground. I don't think my eyes are ever resting, hence the pain. I guess if I keep this up I will have larger eye muscles than average bear! :) So here is to getting another another night of "sleep". I guess it could be worse, I could not have to worry about sleeping because I did not wake up at all. That and my average hours of sleep is down for the week! :) I was averaging close to 12 hours a day and this week I am closer to 8.... If you would have asked me a couple years ago if I would be writing a blog, I would have told you no. I did OK writing for school, I always received good grades and writing was easy for me but it was not something that I really enjoyed doing.
I also did a fair amount of writing for work. Some of the writing was in E-Mail form and some was in reports. I was normally very detailed and normally I did not need to follow up with any clarifications. But yet again this was not something that I enjoyed doing, it was just my job. Fast forward to late last year and my wife kept telling me that I should start blogging or some sort of writing. I kept looking at her like she was some sort of crazy woman, why would I want to start blogging. On top of that sitting still was NOT a good thing for me. Well I decided to follow my wife's advice and I started blogging. Initially my blogging was very sporadic, I was writing but I just could not get the feel for it. Fast forward to January this year and something clicked. I had decided that I wanted to try and help others any way that I could. Since I did not have resources to help or any other outlet that I could think of, I really started blogging consitently. My hope was that if my blogs could at least make others feel like they were not alone it was something. Now that I am blogging more consistently I really think it is a good tool for more than just other people. It does help me to. I can not say that when I blog I feel better, I can not tell you that when I blog I forget everything, but it does help. When I blog I do feel like the "old me" a little bit. I don't struggle to find words like I do when I speak. I don't lose my train of thought when I speak. While I have typos, (I did before any major Narcolepsy symptoms so that is nothing new) I feel like I am able to write intelligibility. Blogging helps me remember that I am still me, it helps me remember that I have not lost my skills or my mind, on really bad days even my "down" blogs help perk me up. The next best part of my blogging is that I think it helps others. I have received multiple messages from people thanking me for blogging and saying that it helps them. That helps me emensly because I know I am helping others. I want to be able to help others more, but this is a start. I am going to keep blogging as much as possible as it helps me and others. It is crazy how things change in your life. Not that long ago I really did not like writing, now it is something that I look forward to. How man times have you heard someone say I will wait until next year? Or how about the aged old we can do that when we are financially stable? Or we can do that when the kids grow up?
Everytime someone says this it is said with all of the best intentions. It is said because something else is deemed more important at the time. But does it really make sense to wait until later.... One thing that Narcolepsy has taught me is that we should not always put our wants on the back burner. Why you ask? You might not get to that back burner. Then you have regrets because you really wanted to do something but now you don't think that you can ever accomplish it. The thing being back put on the back burner can be something as small as going out to that fancy restaurant just once, or middle of the road like buying that new car, or maybe that week long trip to Europe. Everybody has things that really want and they put off. Narcolepsy has taught me that maybe we should put just as much effort into making our wants happen just as much as we fight to take care of ourselves or our family. We might not be able to go "all in" but we can make a version of it happen. For example maybe you have always wanted that fancy sports car. You wanted to feel the power of the car as it takes and how tightly it holds you in the seat. Maybe you wanted to buy a Harley and feel the wind in your hair and the vibrations run through our body. How about instead of purchasing these items you rent one for a weekend. While you might not be able to have that feeling everyday you can at least say that you still experienced it. You don't want to end up like way to many and never get to that back burner. You never know what curveball life might through at you. Maybe your health will fail you, you will unexpectedly lose your job, unexpectedly lose your loved ones, or old age simply catches up with you to soon. I for one fell into that same trap that many do. I always thought that when the kids grew up and it was just my wife and kids I we could do so many things. There are countless places I would like to travel to through out the US and a couple outside of the US. There are a couple of experiences that I have always want to done. Unfortunately me and my wife's health has caught up to us. There are the obvious things that Narcolepsy has done, but that is not all. I have lost my job and my earnings are less than 50% of what they were before. My medical bills have piled up quite a bit even with insurance. But all is not lost! I have not lost the chance to get to that back burner it has just changed. My items are smaller and probably more realistic but they are still there. The key is to make sure to not lose sight of them. The key is to never say never. In some ways it is better to make your wants happen and sort out the what ifs later. If that means you have to sell what ever you purchased at least you can say you had it. Never lose faith in your own abilities to make something happen. Don't wait until the perfect time, make it happen when you can! If you wait too long life might pass you up. In my previous post I described how Narcolepsy affects me in getting up and moving around. This time I will cover how it affects my memory and my speach.
First off my speach. To put things into perspective when I was working I was a Quality Manager for a machine shop. I dealt with internal quality issues, supplier customer issues, and customer quality issues. I was pretty good speaking with our customers. I never lied but I was able to talk my way out of or around situations because I was quick on my feet and knowledgeable enough about what was going on you could not pull the wool over my eyes. One of the best examples was when I went to a customer and they wanted to return over 200 parts. I knew there was a high probability that the parts could have an issue but the customer had not completed the proper testing to justify a return, (the parts would work no problem it was a visual issue). I went to the customers facility to discuss the issue with there team. I ended up on their production floor with a high level buyer, engineer, quality person, and a couple low level engineers. By the end of the conversation I had the high level engineer cussing mad at me because their team agreed with me and decided they needed to complete testing on the parts before they could return them. In the end I only ended up taking back a handleful of the parts and the rest they used with no complaint. I was able to do this because I could think very quickly on my feet, maintain my call, and talk very confidently. Now, I struggle in basic everyday conversations. No stress, no consequences, and yet I can not find the words that want or keep my train of thought. Sometimes I feel like a complete goober because I spit and sputter and just stop talking. It is amazing how quickly things changed! My memory is also way off kilter. I have always struggled remembering personal things, but I could remember work stuff, school things, and random facts with the best of them. It was quite canny really, I could remember things from two jobs previously better than the people that were still there. Now I struggle to remember how to basic things around the house. I know how to do them, but I will forget a step or do it wrong and I am done. My stress levels goes through the rough and I have no chance at remember what to do next. Then my temper flairs and I should quit. But then I refuse to quit because I don't want it to appear Iike I can't do something. My memory issues just send me into a downward spiral. In the past if I could not figure something out or I ran into a road block I would just figure it out. I did not get frustrated I just figured it out. Then would retain how I did it and if I ran into the problem again I was golden. Now I am lucky if I can figure out a solution none the less remember it later. The plus side is I still get up every morning and hey I get to face new challenges EVERYDAY! Next time I will write about how Narcolepsy affects my sleep. It is really wrong to dread everything in your life!
I dread going to bed because I wake up sweating most nights now, my eyes hurt, I wake up not knowing reality, ect. I dread getting up because I am don't really wake up. Most mornings I can barely make it to my chair because my legs are so unsteady and I can barely keep my eyes open. My wife has to follow next to me to make sure I don't hit the floor, my escort. I dread doing things with my kids because it drains me like nothing else and that is with me only paying partial attention. For instance Alex had the opportunity to take part in an actual Opera. I attended but the entire time I had to play on my tablet because if I didn't I would fall aslseep. Unfortunately even using my tablet I was passing out. My head was on a swivel... We got home for me to promptly go to bed for over 2 hours. Tomorrow we have pizza bingo, I want to go because Alex has a blast but I don't know how I am going to make it through the event. It is fun but you are stationary in a gym full of people for hours. Needless to say that does not work so well for me these days. I dread going to a store because within a couple minutes I will be walking like an 100 year old man. Walking real slow and careful. That way when my knees buckle I don't fall. Of course when I get home I will have to nap, no choice. Pretty much anything I do comes with a price. Everything I do I have to be extremely careful. It is just nuts! The worst part is all of this could be improved if I could get a doctor in UW to give a crap. At a minimum if I could get back on the meds that I use to be on I could manage much better. I could not stop moving but it worked. I had options, I could make it through things. I did not have to use my tablet all of the time. I really don't understand how doctors can seem to care so much. Yes, they have other patients, but they can at least give a crap. I am not sure how they think it is OK for someone to not have the proper meds for months. How would they like it if they did not have their pay for months, in my opinion that would be the same thing to them. All I can ask for is for them to care a little, so that I can enjoy things again. I want to go back to moving, at least I felt some what normal when I did it. Yes people looked at me funny but screw them, I felt like a normal person. Here's to hoping ether a doctor at UW gets their head out of their butt or my insurance allows me to go back to my old doctor in Chicago! Tomorrow's another day, I will wake up to fight the good fight again. Maybe tomorrow I will get the call that says your one prescription is ready and your other will be delivered tomorrow! My wife woke me up this morning and then played a song. The funny thing is that I actually listened to the words of the song. This is funny because normally I listen to the best, the rythms, the sounds of the instruments, (probably because I was a drummer). I hardly ever listen to the words... But today I not only listened to the words but I heard them.... They resonated in my mind, over and over again...
The song was "Fight Song" by Rachel Platten. I think this song needs to be the battle song of Narcoleptic and/or anyone with a hidden disease. Why..... Very simple reasons.... First the opening stanza: "Like a small boat On the ocean Sending big waves Into motion Like how a single word Can make a heart open I might only have one match But I can make an explosion" Why you ask? Again simple! To me this means that any small thing can be the start of a new beginning. Now matter how small the change, no matter how small the gesture, no matter how small the improvement, they all can become big changes. We need to stop focusing on the large improvements that we want and to start focusing on the small things. Think about that how much easier would it be to focus on one very small thing verses a very large thing. For example is it easier to find one Lego for your next project or to find every single piece before you begin. Now look at in terms of Narcolepsy or what every hidden disease that you might have. For me it is easier to focus on being able to walk across my living room with out my knees buckling than to try and stay fully awake for an entire day. If I focus on the an entire day, every day, the task will be daunting and never achievable. Now if I simply focus on trying to walk across a room, I might fail, once, twice, three times, but it is a very small attainable goal. Even if I fail I will have a chance to succeed again very quickly. We need to relize that the small things are probably more important than the large things. With out those small obtainable tasks we can not meet those large long term goals. Second is the chorus: "This is my fight song Take back my life song Prove I'm alright song My power's turned on Starting right now I'll be strong I'll play my fight song And I don't really care if nobody else believes 'Cause I've still got a lot of fight left in me" This applies to anyone, but really resonates with those with hidden diseases. We have the power to take back our lives, we all have the abilities to take back our lives, and we all will take back our lives. All we have to do is start with one small thing and move on from their. We might fail once, twice, heck even one hundred times, but we will keep fighting. All we need is one success and then we can build on it. All we have to do is fight and we will WIN! KEEP ON FIGHTING, ONE SMALL BATTLE AT A TIME, ONE SMALL WIN WILL LEAD TO ANOTHER WHICH WILL LEAD TO ANOTHER! My wife has found my song, it may not be my favorite song, but it is my song. It will be what drives me, it will be there to remind me to keep on fighing, one battle at a time! There is a lot of literature on what Narcolepsy is and what it feels like. The most common example used is that to feel like someone with Narcolepsy is to go 4 days without sleep and then trying to function as normal. This might be a good example but some what short sighted. It really does not cover everything.
In terms of my fatigue and tiredness I guess the four day think might apply, but what does that really mean. For starters when I get up after sleeping all night I am more tired than I was before I went to bed. Most mornings I literally can not keep my eyes open. I get out of bed and it is almost impossible to keep one eye open none the less both of them. The best comparison would be to think of your eye lids as your legs. To get your eyes open would be the same as standing up. Now think how hard it would be to stand up with a couple thousand pounds on your shoulders. That is what I have been dealing with in the mornings lately. The next area my fatigue and tiredness hit me is when I stand up from my recliner. Now I sit in the recliner because that is pretty much the only place I can sit comfortably. If I sit on the couch or a normal chair my head will move none stop and my body will sway front, back, and side to side. If I want to feel like I have any resemblance of control over my body I have to recline in my chair. So now it is the to stand up. Once I have convinced myself to get up it is time to actually get up. Once I get in an upright position I have to wait a couple moments to compose myself. The first thing that happens is it feels like every bit of energy is drained out of me. Think a water faucet, when I stand up the faucet turns on and all my energy drains out. Once I get over that feeling the next thing that happens is that my head feels like it is going to explode. Think having a bad head cold and you bend over to pick something up. I get this feeling standing. The last thing is to steady myself as my legs are weak. While my legs are probably the fittest part of my body, if I don't stop and allow the weakness to pass I won't be walking anywhere. Good news, I am up. So what to do now. My mind says, go to sleep, my body says go to sleep, but that is not an option. I have to go to the bathroom. This can be a fun chore. Mind you it is probably less than 30 feet to my bathroom but I have to take the trip slow. I have to do this because their is a good chance my knees will buckle. Sometimes it is one knee, sometimes it is both knees, sometimes it is just a subtle buckle, other times my knees buckle enough that I have to grab something to ensure I don't fall. Now if my legs are feeling weak also this can be all kinds of fun, (hence why I have to collect myself before walking). This is the case for pretty much everywhere I walk. I have to be very careful, make sure I am always aware of my surroundings so that if my knees buckle to much I know what to grab. Now that I have used the bathroom it is time to get some food. Walking there is no different than going to the bathroom but we already covered walking. The next thing I have to tackle is standing in place. You know you can't walk around and pour yourself a bowel of cereal. Well once I stop moving I almost immediately start swaying front and back. Think those old school punching bags for kids. Our know the ones that you blow up and that are weighted on the bottom. You hit them and the sway back but then rebound and come back to you. That is a bit of an extreme example but that is basically what happens when I stand in place. I feel myself swaying but I can not seem to stop it. Normally you lift your toes or contract your abs and that is why you don't sway. For some reason I can not seem to do that until I have already moved past the tipping point. I have a couple options; make an exaggerated step forwards or backwards, hope I can move my feet and other body parts enough, or grab something to stop from moving. Some times I am able to stop from going to far and I go back to my natural standing position, of course only to start to sway again. Some times I am able to stop the sway but not enough to get back to my natural standing position. It is kind of like I am stuck, to me it feels like a movie when someone is trying to grab that person that they just can not reach. Many times I need someone to give me a nudge to get me back in the right directon. Other times I have to grab something or I am going to fall. Just today my wife wanted to take a picture of me and the boys outside. She was trying to go quickly so I did not have to stop moving but she was not so successful. I had to grab the closest thing I could find, in this case it was my middle son. I grabbed his shirt and pulled him to me hoping he provided enough support to stop my movement. He did but he was quite freaked out. BUT I stayed upright. OK now it is time to do something. If I am moving enough this is probably the best time for me. When I move fast enough or exert enough physically my knees don't buckle near as much, my legs don't get as weak, my body does not wobble, and my head does not shake. All good things, right? Well yes except I can't slow down, if I slow down I start to crash pretty quickly. Kind of similar to a movie that had Jason Statham in Crank, I move or pay or it. Today was a perfect exampe, it was a beautiful day outside so the entire family went outside to play. We played soccer and football for quite a while. We had been outside for a while and things started to slow down. PROBLEM, my knees started to buckle and the faucet opened up again. I was crashing and crashing fast. I very slowly and deliberately walked back in the house and plopped in my chair to pass out for a couple hours. I pretty much had no options to do anything else. Thanks is enough for one day. But put this in perspective, what is outlined about is just me moving around the house and doing basic things. This does not account for my sleep issues, memory issues,ect. My next blog I will expand on those items. BUT, all is not lost. I DID wake up today! I DID play outside with the family and enjoy the weather. YES, I have issues, but I am still me and I CAN have FUN! As many patients with Narcolepsy know getting diagnosed can be quite a chore. My diagnosis journey was kind of the middle of the road; it did not take me years once we started looking into it but it also was not immediate.
Intially I went to a sleep doctor because my primary care physician, (PCP) felt I needed to see a specialist because he felt I might have sleep apnea. The specialist ordered a sleep study and the results were inconclusive. Nothing real bad but also not great. On the positive side he said I did not have sleep apnea but beyond that he did not have much to say. He went over the stand sleep hygiene stuff, (keep a good schedule, no phones/TV for bed, work out, ect). Then his parting words were, "Nobody cares if you sleep except for you and maybe your wife." Well thanks, that did not help much. Based upon those results my PCP decided to try me on the basic prescription sleeping medications. They really did not make me feel much better and I had quite the hand over. In many cases I was still loopy until after noon the next day. In one case my wife and I were in line to get lunch at around 12:30pm and I was stumbling around because I was still under the influence of the meds. My PCP decided to try me on Trazadone and refer me to another specialist. This specialist started off really good. After going over my symptoms and what had been tried for treatment, he simply said I think you have Narcolepsy. He told us that I might have to take meds during the day or at night but overall Narcolepsy is managable. We were hopefully, he thought he new the problem, and he seemed to have a plan. The first thing that he wanted done was a sleep study. He just wanted to confirm that I did not have Sleep Apnea. There was no concern there because my previous sleep study said I did not. Off to the sleep study I went. The plan was to complete the over night study and then complete the MSLT. I completed the overnight study and the nurses were kind of quiet. They said they were in discussions wth the doctor. So impatiently I sat in the testing room all wired up, really wondering what was going on. Eventually the nurses came in and said that we were not going to complete the MSLT and to go home as the doctor will contact me. The doctor contacted me to tell me that the reason we did not compete the MSLT was because I had Sleep Apnea. He said that during regular sleep my apnea was not to bad but during REM it was pretty bad. That was a bit of a surprise but hey maybe that was the problem. So off to take another overnight study study to determine what settings my CPAP should be put on. As I could and still can fall asleep any where I was not overly concerned. I completed the study and scheduled a time to see the CPAP guy. I got my CPAP and asked how quickly I should start to see some improvement. The guy tod me that in reality I should see some improvements very quicky, he himself has a CPAP and it worked wonders for him. Again hope.... That hope ended pretty quickly. I had no problems using the CPAP. I could go to sleep in less than a minute, it did not bother me one bit, other than not being able to sleep on my stomach it was not an issue at all. Unfortunately I had almost no improvement. It was just like before, I would go to sleep, and still feel like a Mack truck ran me over every day. Back to the sleep testing room I went again. This time I not only made it through the overnight but I also managed to complete the MSLT. My doctor told me, that had Narcolepsy just as he had initially thought. He mentioned Xyrem but he wanted to start with stimulants first. Initially the stimulants seemed to have worked but they quickly lost their effectiveness. Undeterred the doctor decided to put me on Xyrem. Again as with the stimulants, Xyrem seemed to work in the beginning and then it became less and less effective. Also my symptoms seemed to be getting worse. Almost as they were progressing, which seemed odd as from what read Narcolepsy was not supposed to be progressive. The doctor seemed to be listening so he told me he wanted to complete a Maintenance Wakefulness Test, (MWT). Basically very similar to the MSLT but instead of going to sleep with out fighting you were supposed to force yourself to stay awake. Well that did not go so well. Picture this, a guy that can fall asleep sitting in a fully lit room, with kids running around, and the TV on. Well they stick me in a dark room, except for one night light, and have me sit still on a bed. Then they do their calibration tests, close your eyes for 30 seconds. REALLY, I am telling you I am falling asleep every where and you want me to close my eyes and THEN stay awake. Well as it was we began the test. At the beginning of each "session" they completed the calibration and I started to fall asleep. I fought as hard as I could for every "sessions", (you complete 5). I only stopped fighting when I could not physically make my eye lids move any more. I tried so hard each time that my eyes hurt straining. At my next appointment the doctor went over my results. He started off by going over all the things had issues with in terms of the test. Nothing I did just things that he did not like about the test. One of them was that they were having issues with my delta waves, (if I remember the correct name). In doing my research the waves that they were struggling with are the ones that they use to determine if you are sleeping. This made sense to me as I was and still am always pretty much on the edge of sleep and awake. Anyways, the next thing he said ticked me off. He told me that this test is really tough. Some people take it so that they can keep their jobs and they try very hard. He followed that up with he did not think that I tried very hard. That did not go over so smooth with me. I thought that I did a good job to contain my anger but my wife told me that not really. Apparently he actually moved back a bit as I was "talking", mind you this guy was at least 6'4". I honestly felt I was keeping calm and not yelling, oops failed there. He finished the appointment up with a couple other things that set me off. The first statement was that there was nothing else he could do medically to help me out. The second statement was that I could go somewhere else but they were going to have to start over. This almost felt like a threat, but I was mad. Well I chose to go somewhere else. He provided me with a referral to UW. The one positive was that my sleep apnea was essentially gone. Doing research, I found out that UW was actually one of the better places of sleep in the Midwest. In many places people thought UW was better than UW. The head of the sleep clinic at the time, Dr. Benca, was actually suggested to be the person to see by Stanford Sleep (the gold star of sleep clinics from what I have read). The problem was I could not get an appointment for like 3 months. This was not really an option as my symptoms were getting worse and I was working in a factory. I could not keep getting worse for 3 months. I tried to get my current doctor to see what strings he could pull but he could not help. I ended up at a cardiovascular doctor who felt my ticker was all good but he said he would see what he could do. Well this guy was good, by the time we were in the parking lot UW was calling me to make an appointment. By the time I got to my UW appointment I was having all kinds of fun. My head was wobbling front to back, side to side. I could not stand in one place or I would start to rock. My EDS, (excessive day time sleepiness) was on over drive. I was getting nasty migraines, random shooting pains, I was a wreck. Again my first appointment at UW was hopeful. The new doctor brought the pharmacist with and we had a good appointment. She seemed to have a plan and we started on it. As with my previous doctors trip went this followed. Her ideas in terms of medication were not doing the trip and I was still getting worse. One appointment I actually sat on the floor in the corner to try and not fall asleep but if I did I was in a corner so I could not go very far. So, we did another sleep study. During this study I was dreaming like crazy. I was having 3 or 4 dreams during each nap. I was giving the nurses huge amounts of details about each dream. During my last visit with this doctor we reviewed the results of my sleep study. The first thing that they had wrong was they thought I was on Lexapro even though they told me I had to be weaned off all of my medications. I did stop all medications and I was paying for it, we told them that but they seemed to gloss over it. The next thing we were told was that I still had some sleep apnea but only when I was in REM sleep. Finally the doctor followed up with, I did not dream at all. I quickly asked her how that could be as I provided lots of details about each dream. She said yep that was noted. So my wife asked if he was not dreaming what was he doing. The doctor said that I was probably dreaming but I did not meet the "criteria for REM". Maybe my eyes did not move enough, maybe I did not stay in REM long enough, maybe I did not have enough brain waves. We asked well is it possible that we woke up from sleep apnea as you said I had it when dreaming and she said yes. She followed up with, she did not want me to take Xyrem anymore because maybe that was causing my head movements and swaying and she wanted me to try another stimulant. She was also not going to change my diagnosis. She also suggested that I see another Neurologist for potential help. Unfortunately the new stimulant was denied so she prescribed me Belsmora. Well, I had stopped googling my symptoms as I found some really nasty possibilities for my head movements. Because of that I trusted her opinion and did not research the medication at all and started taking it. In the mean time I was given the name of another doctor in IL to try as he was treating any people in a support group that I am part of. After about a week of my symptoms being worse than they had ever been I stopped taking the Belsomra. Then as my wife and I were pulling into the new doctors parking lot on a Facebook group someone posted about Belsomra. You know that if you have Narcolepsy you should not take it. Well that did it, I was done with UW, I could not fathom going back to a place that would prescribe me something that could potentially harm me. The new doctor in IL was quite surprised that I was prescribed Belsomra as he knew quite a bit about it. He presented me with a plan on where to go next and how he was going to get there. He told us that he knows all about the appeals processes for medications and he had went through most of them. Wheww... More hope! His initial plan did not work but he had more tricks up his sleeve. He put me back on Xyrem which while not a God send it did reduce my knee buckling greatly. Based upon that information and what he had seen in house office he changed my diagnosis to Narcolepsy with Cataplexy. He went on to say that my head wobbles could also be cataplexy. Finally, I had at least a name for the majority of things going on with me. I might not have the answers and they all might not be fixed but at least I knew what was going on. Unfortunately even with his treatment my symptoms progressed to the point that I can no longer work. But he at least was able to give my family some clarity about what was going on. So, that is my very long winded story of how I finally got the correct diagnosis, (I hope). What does it mean to be in control?
Not that long ago I thought be in control was being in control of some pretty superficial things: - When and I how I got to work (maybe a little late, maybe a little early, maybe rushed....) - How long I was at work (stay late, go home early, or go home on time) - What I ate - When I ate - What I did for fun - ect All pretty superficial items that really had no bearing but none the less that is what I felt was being in control. Today I wish I could worry about those superficial things. Today I wish I had control of myself. Today I wish I had control of: - My head - I no longer can keep my head from wobbling all around unless I lay down or completely recline in my chair - My legs - many times my legs are shaky, weak, simply a mess (the sad part is my legs the fittest part of my body) - My knees - my knees randomly buckle with no warning - most days this happens more than it doesn't these days - My eyes - many times when I go out sleep once I close my eyes they move around like they are running a marthon, nothing I do makes them stop - My eyelids - many times I no longer have the ability to keep my eyes open, no matter how hard I try they close on their own. I look like some physco as my eyes slowly drift shut or one eye closes and kind of looks like Popeye - My energy levels - countless times the simple act of me standing up takes every bit of strength and energy that I have I could go on, but I think you get the point. It is important to have "control" but make sure you are worried about the right things. Don't get angry about things that don't really matter. Don't fret about things that don't really matter. You might find one day that the things that really matter you no longer have control of. Also remember that you still woke up today. Remember that you still have a chance to fight everyday and to worry about the right things.... Many people complain about their lack or loss of memory. I am for one do very often. But what are we really worried about, what are missing out on?
I think that the biggest concern is that people that are losing or at least think they are losing their memory is that they will forget their loved ones. They are concerned that they lose enough of their memory that they will not know the ones that they love. In the grandest sense that is potentially true, but that is only the worst case. I honestly think that you will always know your loved ones. Even if you don't know their faces you will still know them. You will know that feeling you had when they were around you. You will know the joy that they brought to you. Even if you can't recognize their faces there are still other ways that you can remember them and those ways are much more powerful than sight. Think about this.... When your favorite song comes on you might not remember the name of the song or who wrote it but as soon as you start to hear the music a smile comes to our face. Many times that very first note is all that you need. Another thing to think about is smell. How many times do people hold onto pillow cases or loved ones favorite shirt. It is not because those things are so memorable but because their loved one's smell is on it. Those people can simply walk into the room where these items are and they are flooded with great memories from their loved one. It does not have to be pillow cases or shirts, it could be cologne, perfurme, ect any scent that was unique to our loved ones. What about our sense of touch. You might think that you can't recognize the touch of your loved ones but I am guessing you are wrong. Your loved ones tend to have a certain spot they touch you or a certain way that they touch you. You may not be able to see them but their touch can bring back memories that you thought you had lost years ago. Now let's put the entire picture together. You think that our have lost all of your best memories. Someone walks into the room, you can not see them but that smell, oh that smell, you know it. Your mind starts filing through things you have not thought about for years. Next you feel a touch, maybe on the base of your neck, real slight, but it sends shivers down our neck. Again more memories flood your mind. While our have no idea who has entered the room but you have more memories flooding through your mind than you have in the past twenty years. Next this person says your name or starts playing your favorite song. At this point you have some man treasured memories flooding through your mind that you don't want to open your eyes. You are enjoying all the memories that are flowing through your mind that you don't want to risk losing them. You are replaying so much of your life that who is in the room does not matter..... Yes, memory loss is real. Yes, many Narcoleptics experience it. But not all is lost. You just have to find the right triggers and it will all come flooding back. Once you find the trigger you want care who walked in the room either! Well, I knew it was going to happen, I knew I was going to be very tired today after sledding.
Today I got out of bed and stumbled to my chair. Laid back, covered up with a blanket, and zombied out for a while. At 12:40 I am still struggling to keep my eyes open. I have 50 pound weighs pulling them shut, my head is on a swivel except it is moving on its own. All I want to do is sleep, sleep some more, and sleep a little more after that. BUT, I would do it all again. I would drag my tired carcass out the door and go sleding again. It will wipe me out all over again and I would be OK with that. Having fun with my family is a must. I don't do near as much with them as I should so when I get a shot to do it again I will with out question! As Narcoleptics we are always tired. Many times it everything that we can do to simply stay awake none the less do anything else.
Rightfully so, many of us complain that we are not productive and that we can not accomplish anything. I know I have had that complaint a lot latey. With all of that said some how we need to save a couple spoons for our family. Some how we need to push through and have some fun with our family. It is just as important for our family as it is for us to remember what it feels like to have fun together. Well, today I took my own advice. I LOVE sledding, it is a great time. Last year I did not sled at all, not sure why, and so far this year we have not really had the right snow to sled. Yesterday we got about 3 inches of snow on top of the hard packed ice we have had for weeks. As the snow came down yesterday I told me wife we ARE going sledding tomorrow. This is probably our last chance to sled the year and we are doing it. Today the boys came home from school, we bundled up, and we went SLEDDING! It was a BLAST! We went down as singles, doubles, and even triples at once. We went down in groups with three sleds, we just had fun. It felt good feeling like a normal family, it felt good being a kid. Am I paying for it now, YEP! But it was well worth it. I will probably pay for it tomorrow and that is OK. I would do it again. I might try again tomorrow if we still have enough snow. I can not lie acting like a kid, not a care in the world, flying down the hill was one of the best feelings! We all need to remember, that while we have our issues, we have to do what needs to be done to have FUN with our families. It is worth the effort to be a kid and just have fun with family. Even if it lays you up for days, the benefit to you and your family fair out weighs those consequences. WAHOO, for being a kid again and flying down that snow hill! What is Valentines Day all about? Is it about the candy, the cards, the "dates, etc?
On the surface yes, it is about the above, but I really think there is a deeper meaning to the day. I think the day is to really meant to help you remember those that you care about. To help you appreciate those closest to you. You don't need a fancy diner or meal. You don't need a big box of candy. You don't need a fancy card. All you need to do is spend the day with those that you care about and let them know how much you care about them. You can tell them in person, you can write them a letter, or you can just be with them. Anything else is simply "icing on the cake"! Keep that in mind as the day comes to an end. It is not about how big the gift you get or the sweets you get. It is about you and your loved ones. Don't hold it against someone for not getting you that "fancy" gift because in the big scheme of things their gift of loving and caring is more important. The day is about the people in your lives not things that can be purchased! I for one don't know what I would do with out my wife and kids. They are my everything! Make sure that you have communicated to your loved ones how much you care for them and how much they mean to you! I know I have written on strength before but I feel the need to touch on it again.
For the majority of my life I viewed strength in a very physical manner. The strongest people were those that could take care of themselves and take care of what was needed. While there is obviously a much broader interpretation of that statement I always thought of muscles for strength. Well as Narcolepsy seems to be settling in on my mind and body and I struggle to get the proper meds that physical strength I have seems to come on go. There are days when my my knees almost knock together because my legs are weak. There are days when I can barely walk across the room because my knees buckle. There are days where just the act of standing in place my legs shake because of weakness. That physical strength I could always point to in my legs is not always there anymore. But I am still a strong person. This summer when I went to a Wellness Retreat, (thanks Caring Voice) I saw more strength in more place than I ever had previously for my entire life. There were so many strong people at the retreat and most of them did not have physical strength. They had mental strength, they had the will to push through even though they face terrible odds. They were truly strong. The strongest physical specimen in the world has nothing on these people. These people fight everyday and overcome overwhelming odds. Today I saw even more strength. I very nice elderly woman that my family knows was robbed. While she is shaken and hurt she is standing strong. She is not giving up. She is questioning why someone would rob her, but she is standing strong. I am happy to say that I no longer view strength as just a physical thing. Honestly I think that someone that is physically strong is completely different than a strong person. Never let your loss of physical strength make you think that you are no longer a strong person. More than likely you are an even stronger person because of your loss. Stay strong and remember that you woke up today, it could have been worse. I really struggle with what this world has come to. Today a very nice lately that my family knows was robbed. This women just lost her husband of 29 years and now someone has the gall to rob her.
Is it not enough that this woman has already lost her husband? Why is it that someone has to stoop to level of stealing from her? What happened to people working for what they want? What happened to caring about others? I don't care what anyone tells me there is simply no justification for stealing from others. There is no justification for taking things that someone else has put their blood, sweat, and tears into. There is no justification for taking something that holds so many great memories from someone else. If you need money for your family, get a job, apply for help, ask your family, do something other than stealing for others. There is always a way to get what is needed and that way is never of steal from others. It pains me to see this kind woman hurting. She is hurting not only because she has lost things but she also feels bad because she "allowed" herself to be conned. You should not have to feel bad because you are a trusting person. You should not have to feel bad because you want to see the best in everyone. We all should have enough respect in others that you can do that. Even in the worst of times there is no justification to hurt others. You have to WORK for what you need. NO one OWES you anything. I am just appalled that there are people out there that think it is OK to take advantage of others for their own gain! I have seen many people asking about services animals. I understand the want for a service animal but I think sometimes people forget to look beyond what they already have at home.
For instance we have two cats and one dog in our house. When I am having a really bad day my dog won't leave my side. If I take a nap on my chair she will either sleep under the foot rest or sleep with me on the chair. If I go to the bathroom, kitchen, frig, anywhere she falls me there and then back to where I am going next. On top of that one of our cats will firmly plant himself on my chest when I nap. There is no need to call him over. He sees me lean back and here comes the freight chain purring machine to need me for comfort. While neither of these animals are "trained" service animals they sure do the trick. You don't have to worry about me on those days because both of them will take care of me. Even on normal days our dog follows me around. She wants to be as close to me as possible. As my symptoms have increased she seems to be even more aware of me and what I am doing. I swear some times she will wake up from a deep sleep if a move. On top of that she has become a top notch watch dog. If anyone comes to the door you would think that we have a pack of 800 pound man eaters in our house. She makes enough racket to wake the dead. There have been times when she has shut the door on people because they were not in the house yet and she is making sure we are all safe. With all that in mind maybe we should stop looking for how to get a service animal and just get a pet. I would be willing to put money on them providing he majority of services that a service animal can provide. They might not be able to go to the store with you but other than that they can perform the same duties as a trained service animal and in some cases probably perform them better. It is not the training that makes the animal, it is the heart. I have yet to find an animal with a small heart. 99% love their owners unconditionally and that is what you really need! What is hope? Some people say their religion give them hope. Others say that hope is meaningless. There are also some that say there is no such thing as hope.
To me hope comes in many different ways, but to me the most powerful hope is that hope that you create in ourself. While that might sound like a strange thought it really is not. Think about it this way, hope is believing that you can return to something that was. Think about that carefully... "Return to something that WAS"... That means that you have been there, you have felt that way before, what you want to happen has happened before! If it has happened it CAN happen again. Now you might not be able to recreate exactly what had happened, it is in the past after all, but you can come close. For example, many times after people have lost someone close to them they are heart broken and feel destroyed. They hope for the past when they were happy and their hearts were filled with joy. Yes, they are right in the fact that their loved ones are gone in a physical sense but they are never gone in your heart or your memories. Their loved ones are still there, but they have to focus on the positives, that past that they are hoping for, because it is still there. Also they still have other loved ones that want nothing more than to fill their heart with joy again. Something as simple as playing a game with their remaining friends and family, and reminiscing can not only fill their hearts will joy but overflow it with joy. Yes there might be tears, but they are good tears. The joy never left their heart it simply needs to be released again. Another example is someone that has some form of disability. Take me for instance. I am no longer capable of doing everything that I did before, but that does not mean that I have lost everything. Yes I can no longer work a full time job. Yes I probably should not cook unless someone is home. Yes I have limitations now, BUT I have not lost everything. While I can not work a full time job if a friend needed help I am capable of pushing through and helping them. While I should not cook alone, I can still cook. I have not lost the ability I just need to adjust how I do it. I have hope, because I can still do many of things I did in the past I just have to modify how I do them or do them in moderation. Hope is not lost because all is not lost, just changed. I have down days but I have hope. If nothing else if you need hope look to me. My life has change dramatically in the couple years. I went from being able to do anything that I put my mind to. I worked full time, went to night school, and was I was active in my kids lives. I burned the candle at both ends. If need be I worked 16 hours in a day. I had the ability to pull random thoughts out of thin air. In my opinion I was fairly successful in life, my boys were thriving, and I was kicking tail. Today, I can no longer work, I have many limitations that I never had, most days I struggle to stay awake at all. BUT, I still have hope. Their is no cure for my disease, but it will not take my life. I will push through everyday, with every part of my being, because I have hope that at a minimum I will still be able to resurrect glimpses of the past. I know I will not return to the "old me" but I am still ME! Have HOPE! Not all is lost! You are still YOU! Focus on what you can do, not what you can't do! Remember the good times and do your best ignore the bad. Today is another day, don't fret yesterday! Be greatful that you woke up today and remember that you CAN do it because you have DONE it before! Today I was introduced with a new little bit of fun do to Narcolepsy....
My head already wobbles side to side, back and forth. While standing I sway forward and backwards because I am no longer able to maintain my balance when standing. Today while using he bathroom I decided to add one more layer of fun. So picture this, a man going to the bathroom doing the following: 1. Head wobbling back and forth - think shaking your head yes 2. Full body swaying forwards and backwards - think a teeter totter 3. The new one.... My hips started swaying side to side So not only is my head in constant motion, my body started moving in two directions. Please tell me how you cope with that. And they say Narcolepsy is not progressive.... So far mine has been, progressively worse. On the bright side I made it to Alex's conference and helped with the book fair. My guess is tomorrow is going to be rough as my legs are already cramping, but I still did it. I pushed through and was part of my child's life! How do you define someone as being a parent? For me there are two types of parents, the first are DNA donors. These are the people that partook in making the child but really have no clue what being a parent is. The second are not necessarily blood relatives but the people that stood by and raised the child.
As a parent of a now 18 year old son and two younger sons it sickens me how many "parents" really fail at the job. In my opinion a parents primary job is to raise their children, help them grow both mental and phsically, and ultimately help them become upstanding people. This does not mean that their children have to be rich, have the best jobs, live in giant mansions, they just have to become good people. For a parent to do this many times they have to put aside their wants for their children's needs. Many times they have to push through hardships to support their children. Some times they have to be the "mean parent" and discipline their children to help them learn how and why to do the right things. Other times they have to provide the shoulder for their child to cry on even though they have no idea how to fix the problem. No matter what a parent ALWAYS has their children's wants and needs at the fore front of their mind and it drives many of their actions. Today, I think our societies greatest failure is the parents. To many are to worried about being the friend. To many are to wrapped up in their own sorrows to focus on their children. To many blame their parents for their short comings and never put the effort in to becoming the parent they can be. If we are ever going to fix what ails this world, parents need to step up and do their jobs. They might not be able to fix the world today but their children's children can foster the next generations of upstanding people and start fixing the wrongs of this world. We all need to stop blaming the past and others for our mistakes! It is time to step up and do the right thing. Stop worrying about what we want and start doing what we have to! There is no book for being a good parent. There are no guidelines to follow. But if you always keep your children's need in the forefront the majority of the time you will do the right thing. You will make mistakes but a mistake is fixable. Why am I writing about parents???? Today I wrote a letter to my father and I outlined why I feel that he is more of DNA donor. His life has always been focused him and what he wants. Shortly I will be doing the same for my mother. I could easily fall back on the age old adage, "I don't know any better look at my parents". But I refuse to do that, my children are my legacy and I want that legacy to shine. I have made many mistakes but my focus has always been to help my boys to grow up to be men. I my opinion my oldest has done that, he still has many things to do in his life and lots of life to live. But when people talk to me about him the common thread is that he is a good person with limitless possibilities. I believe his brothers are following in his footsteps. I was able to overcome my donors, with hard work and dedication I think everyone has that abilitly. Let us all put that work in, raise good people, and naturally the issues we now face will fix themselves. Or we can all sit back, complain about how bad things are, and change nothing. Which option do you think will have the most success? I can go to sleep in point two seconds, not literally but pretty close. BUT many times while I am asleep extremely fast the act of going to sleep can be quite the experience.
Lately going to sleep at night has been quite an adventure. I take my meds, put my CPAP on, put my ear buds in, lay down, and then close my eyes. Once my eyes are closed the fun really begins. Almost the instant I close my eyes they start to dart around. Think the light rays on a disco ball, the lights go everywhere in every direction. Well that is what my eyes are doing, they are acting like a disco ball in my head. With all of the movement and me trying to stop them from moving, (it is annoying at best) my eyes start to hurt. Great fun right... Finally I start to feel myself falling to sleep. My eyes finally start to settle down, my head starts to feel heavy, my body starts to relax..... BOOOM! I am awake... I get a feeling like my head is falling.... And BAM I am awake. Only to start the process all over again. Major eye movement, eye pain, starting to drift away, BAM wake up do to a feeling of falling.... I don't know how many times this happens but it happens multiple times. On top of that my body temperature control has been way out of wack. Our heat is set to go down to 58 at night. This is not a huge deal because by the time everyone is up, (except me) the house is back up to 68. With that said you would think I would be cold and need to be covered up. Lately this is not the case. I feel like my entire body is on fire and I am burning off. I have actually ended up taking the covers off multiple times because I was so hot. My wife has checked and I am not burning up, I just feel that way. Great fun! BUT, I still get up in the morning to fight another day. If nothing else I should have some significant eye muscles... :) It pains me to admit but I use to struggle with people that had hidden diseases. Being a reasonable person I always thought I understood but there were times I did struggle with understanding why some people parked in the disabled parking spots or got special treatment.
Now having Narcolepsy and not having the proper medications I truly understand what those people were going through. For those that may think that there is no way that Narcolepsy can be disabling I want you to think about a couple things: 1. You had to sleep for 13+ hours because there was no way that you could physically stop yourself from sleep. 2. Your eye lids feel like there are weights attached to them and your eyes hurt because you are struggling to keep them open. If you do not make a conscience decision to keep your eyes open your eye lids close and even trying they are still closing. 3. You can not take more than a step or two in your house without your knees buckling and our having to grab something to keep ourself upright. Because of this you walk very slowly and ensure that you have a wall or something solid to hold on to. 4. You are not able to play a game with your child, even though our promised, because you can barely find he energy to stay awake none the less focus on anything else. 5. Your significant other does not want you to get out of your chair unless she is there and as much as it pains you, you do not disagree. 6. You experience some slight facial ticks. 7. There is no way you are leaving the house because the car ride would put you to sleep and try to walk to or from your car is not the safest proposition. In my opinion at least talking about one day, the list above would definitely say you are facing some sort of disablity. Would you disagree? Those listed items are what I was facing Sunday. Today has been slightly better but I am not in tip top shape for sure. Never judge those that you don't know or judge what you do not understand. If you had to walk in someone else's shoes you might be surprised about how hard they might have it. I might have lost the battle on Sunday, but I am still fighing! I still woke up this morning and I still had the chance to keep trying. The war is not over! |