December 18, 2005

Your Limitations Are Not Weaknesses!

With me having Narcolepsy, one of the biggest struggles is accepting my limitations. At first, it was knowing what my limitations were. Now it is accepting them. In a world where most people have no idea what is going on with you, by having Narcolepsy, it makes it more difficult; for me anyway.

When you can't wake up, and are late to work. When you fall asleep while talking to someone on the phone. Things like this I am sure make it really hard for people without Narcolepsy to understand why these things happen.

Now, to be honest, some of these things that happen, I just do not have control over them. But some of them...I do. If I am not doing everything that I can to take the best care of myself, then these things can become worse.

Knowing your limitations, and adhering to them are two very different things!

Sometimes I will stay up way too late, because I feel awake and can do things that I want to do, and then, the next day, I pay the price.

Your limitations are not weaknesses. Everyone has limitations. You and only you know what your limitations are.

On the other side of the coin, Never let other people decide your limitations or capabilities.
There will always be people who will say you're not good enough, smart enough, healthy enough, etc. to accomplish your goals. Don't listen. Remember, you can accomplish anything you set your heart and mind to accomplish! Just do it in a way that doesn't exhaust your resources.

Know and adhere to your own limitations!

December 16, 2005

The Effects of Sleep Deprivation

Hola all!

Any of you feeling sleepy? Even if you do not have a medical condition that may contribute to poor quality sleep, or lack of sleep, sleep deprivation is so common in our fast paced, get it all done now, society.

Do you know how sleep deprivation can effect you? So many people don't realize just how important sleep is to your well-being. Fact is; you gotta sleep. You cannot survive without it. Here are some of the effects that sleep deprivation may have on you!

Sleep deprivation can cause:

Depression: This is common sense, isn't it? When you don't get sleep, you feel like crap. If you consistently don't get your Z's, you feel like crap everyday. And then, the grand prize for your efforts...Depression!

Heart Disease: Yes, it is true. Regular sleep deprivation can cause heart disease. Don't believe me? Look it up for yourself.

Difficulty with social relationships: This is another one that just is easy to figure out. When you are sleepy, you don't really feel like being the life of the party, or even thinking about any kind of party. With continued sleep deprivation, social relationships can become severely damaged. Isolation is just natural when you feel so tired. It is also common with depression too.

I am not trying to depress anyone reading this, so I will tell you, there is something that you can do!!

Relaxation techniques, pain management, exercise, and avoiding caffiene and alcohol are just some things that you can do for starters on your own. Sometimes though, these things are just not enough.

If doing your best to create the best sleep that you possible can does not prove to be successful, you may have an underlying condition causing a problem with your sleep. If at all possible, this is the best time to see your doctor, and discuss your symptoms to see if you may have a sleep disorder, or another condition effecting your sleep.

OK, people I know this may sound like some public service announcement, but it is really serious! For more interesting effects of sleep loss, check out these following articles. Some of them are amazing, and some are just plain scary!

Sleep Deprivation: Causes and Consequences

Sleep deprivation as bad as alcohol impairment, study suggests


Brain Activity is Visibly Altered Following Sleep Deprivation

Scientists Finding Out What Losing Sleep Does to a Body - This one is scary!

Ok, why are you still here? Go get some sleep!

December 10, 2005

Man With Narcolepsy Receives New Horse Buggy After Crash

On Friday November 25th 2005, A man was hit by a car while in his horse driven buggy, and the person that hit him did not stop at the scene. The full story can be found here.

Steve Litzkow, was the man driving the horse and buggy. He suffered a broken vertebrae and ribs, and his horse was killed by another driver. So not only was this poor man hurt severely, but he also lost his horse, and his only transportation; his buggy.

When I first read this story, I felt so sad for this guy, and for his losses. In the article, I could tell that the horse wasn't only part of his transportation, but also his companion. The police were looking for the 18 year old man who caused this accident, and I was glad that they seemed to know the identity of this criminal.

Reading this story also reminded me of how fortunate I am. I have Narcolepsy, and still am allowed the privilege to drive a car. Wow! I can't imagine how difficult it would be driving a horse and buggy during the winter months, or any season for that matter. And I imagine that this man feels thankful too. To be able to just wake up in the morning, with shelter, is such a blessing! People, I am so blessed! Thank you God!

Sleep Disorders effect everyone differently. Sleep Disorders may not be easy to see with the eye, but they can be devestating.

Today, I found an update on this story, which is a happy one, because of the kindness of a stranger in this mans community. The following story was published at the website for Channel 5 eyewitness news in St. Paul, MN, on Dec 1st. You can read it there to, just click
here.

From the Channel 5 Eyewitness website:

The Wisconsin man whose buggy was hit and horse killed last week is getting a new trailer from a sympathetic stranger.

Steve Litzkow was hit Friday evening by an 18-year-old driver traveling at 50 miles per hour. He suffered a broken vertebrae and ribs, and his horse was killed by another driver.

Cliff Larsen is giving Litzkow a new buggy that he did not have the opportunity to use."If something good comes of this, if something good comes of something bad, we're all winners, aren't we?" said Larsen.

Litzkow watched from his kitchen as the buggy was delivered. "It's just wonderful. I can't believe this," he said. "It's just unbelievable."Litzkow drives a horse and buggy to get around St. Croix Falls, WI because he suffers from narcolepsy, a condition that causes him to fall asleep suddenly.
---------------
My prayer go out to you Mr. Steve Litzkow, and I pray that you have a quick recovery. Thank you Mr. Cliff Larsen, for your kind act, and also reminding us that kindness is still alive in this world!

I know that the world can seem so cold sometimes. People can seem cold, and careless. But there are still people out there that care, that want to help others.

We have got to be those kind of people! Remember, one little kind act to you, may be the biggest gesture of love to someone else!

Update: According to twincities.com, Mary Linehan, an organizing member of the Taylors Falls Lighting Festival, said she will open a fund Monday to benefit Steve Litzkow, using money from the recent sale of her own horse to get the fund started.

Donations can be sent to: The Steve Litzkow Fund, c/o The RiverBank, 2183 U.S. Highway 8, St. Croix Falls, WI 54024.

To view this info, and the story from the twincities.com website click here.

December 7, 2005

Myths and Facts About Narcolepsy - With a Little Personal Experience Added For Good Measure!


It's time to get to the facts! There are facts about Narcolepsy, and there are Myths. Let's see if we can make some of the facts about Narcolepsy clearer.

No
, I am not like one of the characters in the movies "Rat Race" or "Deuce Bigalow".


I have Narcolepsy.


You will not find me standing in the middle of somewhere asleep.

No
, it is not contagious.


I know that I had practically no real knowledge of what Narcolepsy was until in the process of being diagnosed with "whatever it was" that I had. It took 14 years to come to a proper diagnosis.

Today, I would just like to give you all a few important facts about Narcolepsy, as well as clear up some of the myths. So, stick with me, don't fall asleep, and read on!


First let's start with the basics:


Narcolepsy is a chronic sleep disorder with no known cause. The main characteristic of Narcolepsy is excessive and overwhelming daytime sleepiness, even after an adequate night's sleep. A person with Narcolepsy is likely to become drowsy or to fall asleep, often at inappropriate times and places. Daytime sleep attacks may occur with or without warning and may be irresistible. These attacks can occur repeatedly in a single day. Drowsiness may persist for prolonged periods of time. In addition, nighttime sleep may be fragmented with frequent awakenings.


This is a very basic description of what Narcolepsy is. There are so many
other "classic" symptoms that can occur with Narcolepsy, and I will discuss those further in other posts, but above is a very basic idea.

So now, on with the Myths!


Myth # 1
Narcolepsy effects each person in the same way.


This statement could not be any further from the truth! Each person is effected differently. Some will say that their worst symptom is daytime sleepiness. Others will say that Cataplexy, (which I will talk about more in the future) is the most debilitating symptom. Among all of the symptoms that can occur with Narcolepsy, some will have all of them, and others, maybe only a few. Some people's symptoms will be very severe, while other will only have mild symptoms. Each person is different.


Myth # 2
If people with Narcolepsy would just get more sleep, or go to bed earlier, they would be ok.


NOT!
I know that sometimes, when a person has an illness that is not easily
seen by simply looking at them or talking with them, it can be difficult for one to actually realize, or believe that they are really ill. With Narcolepsy, the amount of sleep is not the problem; it's all about the quality of sleep.

According to JEROME M. SIEGEL , professor of psychiatry and a member
of the Brain Research Institute at the UCLA Medical Center. "People who are not narcoleptic begin their nighttime rest with non-REM sleep, with REM sleep following roughly 90 minutes later. But narcoleptics frequently go straight into REM sleep. Because of this trait--and because narcoleptics experience loss of muscle tone and dreamlike hallucinations that normally occur only during REM sleep--researchers have hypothesized that these symptoms of Narcolepsy result from the inappropriate triggering of some aspects of REM sleep."

So in layman's terms; People with Narcolepsy have sleep cycles that usually are quite screwed up. This being true, Narcolepsy can cause a person's sleep quality to be extremely poor and non-refreshing, regardless of the length of time they sleep. Let me just say, I could sleep 20 hours, and might wake up to feel like I never slept. Again, everyone is different, and each day is different too!


Lastly
, for now, so I don't put anyone to sleep,


Myth # 3
There is an established cure for Narcolepsy.


Research being done today for Narcolepsy looks quite promising, but, currently, there is no cure for Narcolepsy that has been found....yet. There are many different medications used for treatment, and many people do well with these therapies. I have even heard of some turning to alternative medicines to treat Narcolepsy, with some positive results. Again, everyone is different.


I know some people with Narcolepsy that work full time jobs, with a family and even actually have extracurricular activities. Others that I know are in wheelchairs, or a full disability income, and cannot work at all. And then there are the many others in between.


Remembering that we are all different is a key element. If you know someone
with Narcolepsy, or have it yourself, it is a waste of time to compare them (or you) with someone else who has this illness.

If you know someone who has Narcolepsy, and want to know more about how they feel or are effected by this illness, then why don't you just ask them? They are an expert. They know themselves and how they feel, better than you or anyone else, just like you know about you better than anyone else. If the person wants to share knowledge with you, you will most likely gain a wealth of information, and a better understanding of the person themselves.


I have Narcolepsy. People who ask me questions and don't just assume they know how I feel or how the illness effects me are a breath of fresh air! People like that make me feel accepted. It feels like they really do care.


Click Here to go to the first page of this blog - "The Adventures of a Sleepy Woman".

November 30, 2005

The Adventures of a Sleepy Woman...Who Happens to Have Narcolepsy.

Welcome!

My name is Ja, and I have Narcolepsy. It is my intention to create a blogspace that will inform you, assist you, and yes, maybe even humor you about all things Narcolepsy!
Also, I wish to assist those who would like to learn more about other sleep disorders, and the myths and facts about sleep, itself. Many people think that Narcolepsy is a very rare disorder. Narcolepsy is not that rare.

Narcolepsy is an often unrecognized and under-diagnosed condition. It took 14 years and countless diagnoses for me to find that I did in fact have Narcolepsy. 

Living with a chronic illness is not an easy road!  The ups and downs of Narcolepsy can effect every area of one's life. By sharing my experiences and opinions, it is my hope to help people understand more about Narcolepsy from my own adventures, and to remind those who also have Narcolepsy that they are not alone! Thanks so much for visit my little corner of these interwebs!
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