Hypersomnia and Me

I have been sitting at home doing almost nothing; life seems to be going on without me. I feel lost but I am mostly pissed off. I woke up today after sleeping over 18 hours.

There is so much I could have done today but did not have the chance to start. This is a common trend with me. You see, I have gone through this my entire life. It seems this world is not a place for me. I am here but often wonder why.

Most people know what they want to do with their lives from the start and I am no different except, everything I wanted to do is now a distant reflection on what could have been. I am not saying that I am giving up, that is far from the truth. However, I am saying that things have become too difficult and it is so hard to continue with little to no hope in my future.

I often wonder if I am alone but know sadly that I am not. You see, I suffer from a debilitating sleeping disorder. It is called “Healthy Hypersomnia” and it has wrecked my life.

I have watch my friends and even my younger sister become a part of this world and move on in their life to achieve their goals. This is heart wrenching to say the least because I have not been able to keep up with my peers and have watch so many of them achieve great things, while I am too busy sleeping my life away.

Now, I am not looking for pity nor am I looking for encouragements. I am only looking for answers. I have gone through study after study, a total of three.

All the doctors can give me is I am sorry there is nothing I can do. I have been told, I am on drugs or I have poor sleep habits, neither of these are true.

Now, I will have to say I gave up on my sleep schedule a long time ago. I just go by what I have to do the next day by hoping and praying that I will be awake for whatever it might be.

This may make some people think that oh, I do have poor sleep habits but really, I do not. When you sleep for hours on end, you do not have a chance to create a sleep habit.

My sleep habit is I go to bed and I sleep. I get ready for bed like everyone else and sometimes I listen to music to calm my soul. I now believe that it does not matter what time I put myself to bed because that is not the issue. The main issue is getting up.

For years, I have relied on others and bought alarm clock after alarm clock but neither seem to work. People can wake me up but they become tired of me or just flat out give up. It is disturbing to watch everyone give up on me, even when I have not.

The alarm clocks do not work, they just continue to go off until the alarm clocks shut themselves off, or someone else gets pissed and shuts them off, or I shut them off myself by throwing them, which is one of the many reasons I have gone through so many.

Alarm clocks break things! Apparently, you should never throw them because one, they can break and two, they break things they hit.

Now, you are probably wondering why I would throw my alarm clock in the first place. Well I do not mean to nor do I remember doing so, it is just something that I do when I am in my Sleep Drunkenness.

Sleep Drunkenness is a nasty part of my Hypersomnia and can get me into a lot of trouble. You see, when I wake up in my Sleep Drunkenness, I can appear very awake or I can appear as if I am Sleepwalking.

During my Sleep Drunkenness, I am totally unaware of the things I am doing or saying. This is a very scary thought! To be awake but not to be is a very unusual thing in which most people do not understand.

People do not believe me when I tell them I can have a complete conversation with someone and never remember having it but it is just one example of my Sleep Drunkenness.

Another occurred last year, when I was staying with friends. I had my dog, Nova, with me. I had gone to bed and had been sleeping for about 5 hours before I got up with my dog attached to my ankle, which I do to keep me safe when I am asleep.

I went to the kitchen, cooked a whole carton of eggs, and then set down on the floor with my dog and we both had eggs. I am positive that she ate more than I did and was completely happy with my decision but that is not the point.

The point is that I cooked while I was asleep and have no memory of it. If my friends had not noticed it and watched out for me something could have seriously went wrong. The only reason I know anything about it is that they were nice enough to inform me.

My sleeping disorder is not only a safety issue but it is a life changing experience. It has made both going to school and working almost impossible. Most people have not heard of Hypersomnia nor do they understand the disorder itself.

How does it affect the people who have Hypersomnia?

Well, I will tell you, they become lost in this structured world and have to make drastic changes in their lives. It becomes a waiting game for the next episode to occur.

Sometimes, there is a sign and other times, there is no sign at all but always it has dramatic effects on the lives of those who suffer from Hypersomnia and similar Sleep Disorders.

Doctors have very little understanding of what exactly Hypersomnia is and every category that they have is so broad that it is like pigeonholing an ocean of possible diagnosis and cures. Until doctors fully understand each type of Hypersomnia, those of us with it are left to try to make it in this 24-hour society, which does not buckle to those that do not form to its concrete construction.

I sleep normally 12 to 15 hours a day but sometimes find myself sleeping up to 72 hours in one day, my day.

Okay now, you are asking how that is one day, will it is not, it is three days of sleep with no getting up to go to the bathroom, no eating, and no drinking, just total sleep. However, sometimes, my Sleep Drunkenness will allow me to be awake enough to use the restroom, eat, and get something to drink. There is no way to control my Sleep Drunkenness and usually I will end up back in bed, unaware that I have woken to complete any task.

This effects the body dramatically. I wake up completely drain of all energy. One would think with sleeping that long that you would be rested but that is untrue.

I have had people tell me that they would love to sleep as much as I do but I only tell them they just do not understand how bad it really is.

Your body needs to release the toxins that build-up and needs to have nourishment to continue to function normally. When you sleep for that long without food or drink, you become not only dehydrated but also malnourished.

To compensate, I tend to overeat, while I am awake. This is bad for many reasons especially for my G.E.R.D. In addition, it is hard for people with Hypersomnia to take their medications on time and staying on my G.E.R.D. medications is important.

G.E.R.D. can cause serious damage to your upper digestions system and is bad for your vocals. I often wake up with bad heartburn but mostly I wake up throwing up.

By the time, my stomach is together again, I have to eat or I will pass out from lack of food. I am always thirsty and cannot seem to get in enough fluids to save my life. My skin is always dry. I am constantly worried about getting enough nutrition and fluids in before I go back to bed.

The only problem is when I start to go to bed it takes me over an hour to fall asleep most days because I have to keep going to the restroom from all the fluids I pushed in me.

One of my major worries is the buildup of urea, uric acid, creatinine, and other toxins in my body. When I first wake-up, I need to go to the restroom so bad it is painful. I worry that these toxins are affecting my body and possibly making things worse.

Do I really need to be building up my ammonia levels in my body?

That would be a bad thing! I do not want to have my kidneys fail nor do I want any more infections.

I often wonder why, when I first wake-up is my body unresponsive. When I wake-up, I cannot seem to get up and it seems as if my body is not listening to my brain. Now, this does not always happen but it happens enough.

In addition, when I try to get up on my feet, I am not able to move and I just fall over. Sometimes I am so shaky it is hard to walk and I am running into everything. Lately this has been happening more often and I wonder why?

Another thing I have to worry about is getting bedsores. I have not had them yet but it is a matter of time. I already have pains just from being in bed so long. Since, I have worked in the health care field myself; I know exactly what bedsores can do.

Bedsores are nasty, painful, and debilitating to say the least. They require daily care, several times during the day, if you want them to heal. I do not have time to take care of them. If I were to get bedsores, I would be in trouble.

Because of my Hypersomnia, I have been unable to spend a lot of time with my family and my friends. My personal relationships have suffered. Even my relationship with my son has been affected.

I often wonder, if in the end, I will have anyone there with me because so many have just become tired and left me; not because of who I am but because of my Hypersomnia and people not understanding it.

All I want is to sleep normally. I hope that with my age going up and knowing that most people start to sleep less as they get older that I will become lucky and finally be able to get my life on the track I so desperately want.

My Hypersomnia has also affected my work life. I do not have insurance any longer. This causes another issue sense my only hope is going to a doctor and getting treatment. I have written doctors and have had no luck in finding one to help me. Therefore, I am now stuck trying to help myself.

I am currently, pushing for my future to be brighter by going to school and trying to find a job that will work with my Sleep Disorder. Mostly, I am trying to go to school but I am also working towards becoming a writer.

I have already finished my first book, “Where Love Grows Wild”. It is a starter book, which means I completed it to get my name out there and to show people what I have to offer. In addition, I am putting it out there in hopes of making this world a better place.

In this book, I have written about sexual abuse, physical abuse, war, and other topics I think may make some impact in someone’s life and perhaps to the world in general. I know one person cannot change everything. However, I also know, that just one person can make a difference and that difference, always means something, no matter how small it might be.

I am hoping that one day I will be able to afford to put my book out there more. I am not going to rely on others to do this for me because that might take the rest of my life to get anything out there.

I am currently working on my second book and hope to have it completed soon. I have never written a novel before but I am trying. It would be a lot easier to complete my writings, if I were awake more!

 

    

 

Lower Class Survival

Personal Note from the Author:

Hello, everyone! I hope everyone is having a great day. I am glad that you have stopped by my Blogger and I do hope you enjoy reading my Blogs. I hope that you will let me know what you think of them. Each blog will be different. Some will be about my life and others will be about things I enjoy or hate but most should be positive. I hope that you will return.

End of Note!

Lately, I have been wondering how the lower class even survives. There are very little jobs out there and none of them pay enough for anyone to live alone. However, living with others is tricky because most people are not good roommates. They either do not pay their bills on time or are complete slobs and will not clean anything.

What does a lower class person do, if they do not have someone they can trust to be a good roommate?

Well, here is what happens. They have very bad rental history and live paycheck to paycheck praying that this paycheck will be enough to cover everything, most of the time it does not even cover the rent, let alone the electricity or food.

Yes, there are food stamps and even people to help you out with your rent but most of the time that money is already taken or never enough. Therefore, they put their stuff in storage, try their best to keep their job, and not be forced on the streets.

They live with friends and/or family until they think they have enough to start living on their own or they are kicked out, whichever comes first. Once, your friends and family are used up, you have no other choice but to live on the streets.

How do I know all of this?

Well, I am one of those broke souls. I have tried to make it so many times but have failed each time. Whenever I think I am going to be okay and I am finally going to make it, something always happens to push me down.

I am currently back there again. I am afraid that I may end up back on the streets.

Yes, I could live with my birth family out in the middle of nowhere but they are so benighted and callow that I just get frustrated. In addition, they do not let me use the car when I need it. This is going to cause issues, since I am now employed inside the city. In addition, I am going to college.

Sorry, I cannot tell you where because one, I don’t want people just showing up, saying I read your Blog, and two, I have a crazy ex that wishes my family and myself harm. Therefore, I am just going to put the city, meaning San Antonio for now.

Anyways, if I go live outside of the city, I will not be able to improve my status nor will I be able to make it to any of my current obligations, which I have committed too. I have used all the friends I have that would let me live with them, so I have nowhere to go at the moment.

Now, you see I do not know if I am really going to lose my new place or not. My sister helped me out, so I am not mad at her but I am upset, because I was counting on her to help me out.

I lost my job at Jim’s Restaurant, not, because I was a bad server and not, because I did not do my work. It was because I did not show-up. I called occasionally when my body would let me, but I did not show-up.

The reason I did not show was that my body was just too tired to go to work or to do anything at all. You see, I could have been in the middle-class or even made my way in this world but I suffer from what is known as "Healthy Hypersomnia".

Yes, it is called “Healthy” but to me it is not that healthy. You see I sleep most of my life away. Yes, I am up most days and yes, I am capable of working, it is just that I cannot wake up for the life of me.

I can sleep 12 some odd hours and be up for 6 to 8 and then my body wants to crash again for 12 or more hours. I have slept up to 72 hours before which is scary in itself.

I have gone through three different sleep studies and no matter how many I have gone to, no one can give me any answers on how to make it stop. I have heard it all, you have to be on drugs, or you just have poor sleeping habits.

Even if I go to bed at the exact same time every night for weeks on end, I can guarantee everyone that I will never wake up at the same time. It does not matter how many alarm clocks I set or who I have wake me up.

Now, there are people who have an easier time waking me up like my twin sister, my son, and even my dog, Nova, but that does not mean I will wake up or that I will be fully aware of the things going on around me.

I also have bouts of what is called Sleep Drunkenness. This means I appear awake to everyone except me. I have no idea what happens during my “Drunkenness” and I cannot tell you, if I yelled at you or if I told you, I was awake and would be somewhere or do something.

This has caused many issues in my life including losing many jobs and affecting my schooling. It also has affected my relationships with friends, family, and my romantic partners of the past.

I am even afraid of start a new relationship because I do not want to rely on anyone and I have seen what it does to my past relationships. Most of my past partners, do not understand my disability, they think I am joking or lying.

Even most of my family does not understand, I cannot blame them for not understanding but I am sick of having my heart broken repeatedly because of something I cannot control.

I have lost things that mean a lot to me, my jobs, my friends, my son (whom I have not really lost but feel I have not been there enough for him), and so much more.

I want to be a writer because I feel like I have a lot to say. I have finished my first book and I am even starting on my second. The thing is I do not have the money to publish my work with my own company, Garbhog. If I took it to other publishing companies, I doubt I would have much success because I could not go to any schedule book signings or anything.

I just do not do schedules very well. I am much better at an unstructured life but this world does not exist.

I also want to be a singer. I have a good voice but because of my sleeping problems, it would be hard for me to actually schedule concerts and meet deadlines. In addition, singer professionally, requires a lot of fluids, which I sometimes miss because I sleep so long.

I could accomplish both and perhaps, even make a good living at it but my sleep keeps me from doing anything. In addition, I cannot take a second job or even work more hours, if I want to continue to go through school but I have to figure out something and quick.

I cannot keep living like this because one day I will not be able to bounce back. I keep telling myself, if only I could get some sort of brake, then I would not have to continue to worry. All I want is to stop worrying about where the money is going to come from.

I do not want a lot. I want just enough to pay the bills and have food on the table. I just want to feel safe and know that things are going to get paid, but with the way things are right now, it is hard to have any hope.

My only peace in this world is my son’s smile, my family, my writing, and most of all my music. When everything seems hopeless, I turn on the Indigo Girls, Caroline Aiken, Danielle Howle, Bonnie Raitt, Dolly Parton, Heidi Hensley, Joan Armatrading, Martine Locke, Melissa Ferrick, Michelle Malone, Rachael Sage, Melissa Etheridge, or even Brian Ashley Jones.

There are so many good artists out there to listen to and none of them ever get their dues. I listen to so many types of music and I enjoy so much of them.

Music moves my soul in ways other things cannot. I guess it is my only true comfort.

It does not matter who you put on, as long as it has a beat and you can understand the words if there are any. I love all music but I guess I am steered more towards the girl bands and the genres of Folk, Rock, Country, Blues, Celtic, Pop, and Punk.

I guess I am saying there is not much in this world to make me want to stay here except for my son, my twin, my family, my writing, and music. I guess I am really lost, I just do not know what to do.

No doctor has the answer, no person really. I am just trying to make it through each day alive and thankful that I woke up even if I do not know what day it is or how long I have slept.

I know that, if I try to keep faith that good things do happen to good people and that we do not have to always struggle for the simplest of things such as food and doing our laundry, outside of a bucket. One day, things will turn around and I will not be lonely forever.

Peace,

Jalopy

 

    

 

What A Day

Hello folks!


I really hope that everyone is doing so much better than I am today. It’s been such a horrible day. It started with getting home late from work at 12:30-ish this morning. After getting off work, I walked home about two miles in the dark, cold night. I ended up right across from my old work before I almost past out. I walked over to Jim’s, you know the one that fired me illegally. For some reason employers seem to think that you need an update on a life-term condition covered by the Disabilities Act. As if Healthy Hypersomnia goes away, I wish! Anyways, that is a different topic. I crossed over to the other side of the street and went into my old work. My best friend Jennifer was working and another good friend Greg. Well both Gregs’ were working, the dishwasher and the server. I am talking about the server but I guess both can be considered friends. I was friends with everyone there! I did love my job so much.


Again, off topic! Oh,well, opps! Anyways, I went straight to the bar and plopped down. Greg, the server noticed me right away and gave me a slice of chocolate marble cake he had made. Yummy! However, I was not really in the mood for it, which is very weird because I am the girl who can eat her weight if not more in anything that contains massive amounts of sugar. I eat it anyways and he refilled my Dr. Pepper but put ice in it, which I hate, but I was too tired to say anything. I just sit there! I did talk a bit! Okay, so maybe I bitched about how I did one and a half tubs of silverware and then being told I could not go home before I rolled more but I had to wait for the dishwasher to actually arrive in an hour to wash them first! I was pissed even after walking two miles home in the dark! I told both Jennifer and Greg about it and I told them that I of course was not going to wait for someone to decide to come around and wash dishes! I was finished with all my side-work, was pissed off, and did over two tubs of dishes myself which, included a little over a tub of silverware! Then, I rolled them and walked my butt home. Well maybe not home yet! I sit there for a good while and had some Canadian Cheese Soup with Captain Crackers. Which was very good by the way!


After that, I went home and washed my uniform in an empty trashcan because the laundry room was closed and I was supposed to be at work at 3pm. Of course, this did not happen. I had to go to school, get my schedule and go by the food stamp office, give them some paperwork. I am supposed to start school next week on the 8th but this may not happen now! Oh, I am getting ahead of myself. After washing my uniform and hanging it to dry. I went upstairs and gave Jennifer’s boyfriend my keys so that someone could come and wake me up at least by noon the next day. They told me, my neighbor Joe was looking for me and that he was moving.


I started down the stairs to find him standing at his front door. I told him he was just the man I was looking for and that I had just heard that he wanted to talk with me before he moved. I talked to him a bit and found out that he had only stayed for me. Yes, me! Folks, this guy is in love with me and I’ve done nothing! My friends keep telling me it is because I am beautiful but I do not see it! Okay so maybe I am pretty but I not that pretty. Why is it that I keep braking all these straight guy’s hearts and why in the world are there so many. This is the seventh in less than a month. All I have done is try to be friends. I know I have a bubbly personality and all but, I just do not understand. I hate breaking anyone’s heart and to have this guy say that he only stayed in his apartment for me was shocking and slightly disturbing. I really like him as a person and only in a friendship way. I do not understand where I have gone wrong or even if it is me that is making a mistake. What is it that keeps these men doing this? I am starting to think it is only my boob size! Not my personality! Are men really that shallow or am I just doing something to attract them that I am completely unaware of? I am starting to think I will never know!


After talking with him, I went inside and went to bed. I was woken around noon by my friends, went upstairs, and had coffee and top roman. I talked with them a bit before heading back downstairs and putting my clothing in the drier because it was not dry yet. I then hopped in the shower and got ready to leave to do my running around. After retrieving my cloths and getting everything together, I took off and headed to the food stamp office first. This went smoothly and I was off again on the public transportation to my college. When I got to my school, I went straight to the financial aid office and talked to them to find out when I will get my money. Come to find out I have to wait a month to get it. I am pissed. I am trying to get them to push it through but I do not know if this is going to happen. In order to get my money I have to stay in school but without it I cannot do school. Now, I have to come up with part of the money by Tuesday or be dropped the next day. I do not have the best GPA right now because I have gone through a lot the last few semesters I was in school. I did start off with a 4.0 but have dropped down to a 1.8 which sucks but I want to turn that back around and if they do not work with me I do not think I can for a long time. I was so happy to be going back to school and now I may not be able too! I am devastated.


Right now I am sitting in a McD’s trying to think about my future and hoping that somewhere things will turn around. I have made so many changes over the past year or so and I want everything just to fall into place but it seems that no matter how hard I try I keep being pushed back down and struggling just to breathe. I am afraid I will end up back on the streets so to speak. I was not actually on the streets but I was living with others out of the kindness of their hearts. I do not that many friends that will let me live with them and I believe I have already used all my resources and maybe back in that same pit of shame again. Okay so maybe it is not shameful but to me it is. I have tried but the world seems to knock down the poor every time they finally find themselves making progress. I wonder if anyone cares. I know some must or we would not have groups out there doing so much good work for people. I guess some of us just fall through the cracks and I am one of them.


I am hoping that my book will help me start to get my head above water. I am finished with it but cannot seem to find the simple $35 to get it copyrighted. Every time I come up with the money, something always comes up and it is gone. I really want this book out there because some of it I really think is good. I also think that a few of the proses may make great lyrics to a song. I have some friends in the music industry that I really want to show them these few and see if they can help me write the music to it. I tried myself but without an instrument, I cannot be sure how it sounds or even if it is right at all. I wanted to put out my own record but I do not even know if that would happen. One I do not have the money and two I do not think I can play an instrument well enough to pull it off. I use to play the violin but I sold it to make rent. Big mistake let me tell you because now I do not have an instrument and I was pretty good. Now, it will take me a while to learn it all again. Anyways, I am now reworking on my second book and hope to be done in a year or so. The second one is coming to age story unlike my first one, which is only a mixture of poems, proses, and other literary work that I am not sure what it is. I thought the first one would be easier to put together because I had already finished most of the work over the years, it was more putting it together and typing it out. I was upset when my ex-girlfriend Sindy, destroyed my computer and totally ruined my hard-drive. I thought I lost it forever but was able to get the first book back through my friends who had my work on their computer but the other three books were lost so I thought. I found my second book but not the rest. The only problem was that the second book was not the whole thing and I had to retype it all but at least I had it right.


Anyways, I hope to somehow come up with the money for school or get them to work with me somehow so I can get this all done because I only need three classes to transfer and have to retake one I already past, my math, if I want to go onto the next level. In addition, I hope to have my book copyrighted soon so I can start putting it out there and I am hoping my friends will at least help me write the songs I want to write. Maybe even sing them for me or let me sing with them or even help me put out some of my own. For those that do not know my vocal abilities, I have song sense I was little in church choirs, school choirs, and just for fun. I am scared to death of singing by myself but can do it but shaky and scared the whole way through. I guess I am uncertain about how I sound because I use to be what is called a universal singer, which can sing with anyone high, or low does not matter but I have lost a lot of that because of GERD. I have tried lately to become more comfortable with the sound of my own voice and not having others sing with me, which I prefer all together. I have been told I am sort of a cross between the following, Joan Armatrading, Bonnie Raitt, and Patsy Cline. I take this as a compliment. I want to make my proses into music that sounds similar to this sound so I can sing to it. Anyways, it is just a hopeful dream and I do not even know if anything in my life will ever come to fruition as so much in my life has not already but one can only dream. I guess I am a big dreamer.


I hope again that all of you are doing well and I hope to be blogging soon again. Peace to all and please feed my fishes, they get hungry.


The one and only,


Jalopy