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!