Narcolepy, Truth and Consequences with a Side of Depression.

Today I've been thinking about what to write about here, and I have a few things I'd like to share.  I used to try to read, and research everything possible regarding Narcolepsy.  New treatments, New discoveries and anything new about Narcolepsy was on mind more than anything.  

This blog started out as a way to share what I learned along the way.  So, today I would like to share some things that I didn't really understand before.  They didn't require research, they required time; time to grow, and learn more about this Narcolepsy, just by living with it.

First what I know is this; even though I have been diagnosed for about 11 years, I still sometimes get to a place where I feel like people that are close to me disregard my illness or act like it is not a big deal.  It seems as if they expect things from me that are things that I may not be able to do. 

 Instead of being straight forward and reminding them in a direct and honest way that I can't do whatever it is at that time that they ask of me, I take the selfish route and begin my passive aggressive routine.  I except the task and complain to myself about how mad I am that they would even ask me do whatever it is in the first place.  Then comes the pity "celebration" about how no one cares about me, they don't believe my illness is real, they don't appreciate anything I do...and so on.  They even will ask me to drive somewhere when I feel sleepy!!  They don't care!!  And then like magical clockwork depression show up to make it worse...Thanks depression!

Here's what know is true; I am the one in control of my actions.  If I  know that I am not able to do what is required at that time, it is my duty to tell them that.  Yes, they know I have Narcolepsy, but unless I let them know how I feel, they will never know.  If I just do what they ask of me, when I don't feel that I can, or if it is not safe for me to drive, I am the only one to blame if I do it anyway, without letting them know that I shouldn't do it.

So, in a nutshell...tell people how you feel.  Do the best that you can, and if you can't do something, let them know that you can't.  It is so very simple, yet sometimes we make everything so much more difficult! Truth is, that there may be people the really don't care about how you feel.  But in my situation, most of the time, those type of thoughts are created only by me, and my actions. 

 I do have a lot of people that care greatly about me.  There are some that don't and yes, it hurts me to the core at times.  I am still so grateful for those that do care.  I am blessed.  Sometimes we need to check ourselves!  We need to give people more information and more chances.  We really have absolutely nothing to lose.

This Sleepy Woman Hasn't Had Too Many Adventures Lately!

Hola everyone reading!

I haven't written in awhile, and I am sorry for that, if anyone was wanting to read here. My dog died Aug 10th, and it has been a little harder than I thought it would be. He was 14 years old, but very young acting! In the last year he got Diabetes and it was really hard on him. He also went blind (overnight) this year, but adapted so well, and did a great job finding his own way anywhere.

I loved him like family, and after having him for 14yrs, he was my little brother. He died in his sleep at the vet. They initially had to give him lots of phenobarbatal because he was having seisures that wouldn't stop. By the next day, he still was having them in his sleep and died.

I want to write here again, I have been reading a lot, but it was just hard to write anything without losing it. As many of you already know, stress really messes with your Narcolepsy too! I am hanging in there, and I hope that all of you are too. For any of you that pray, please pray for my family and the grief process. We are doing ok, but without God, I dont even want to think about where I would be!

Thanks Mucho!!

This is my dog Leo. :)

Does Narcolepsy Make You Post to Your Blog Less??

Hola!

I have really been trying to write in this blog on a regular basis. I am guessing that it is quite apparent that I have not been doing such a fantastic job at it :(

My little cutie dog got sick, and it has been tough to deal with, but I am sure It might be most difficult for him. He went completed blind literally overnight. When we got to the vet explained it could be a illness caused SARD where pet go blind rapidly, without know why. Then, that same week he was diagnosed with Diabetes. After that, all sign are pointing to another additional diagnosis of Cushings disease.

My poor little guys has really been through some difficult times lately. If anyone gets a moment, would you please say a prayer for him? Thank you in advance!!

Long Term Effects of Narcolepsy - What Do You Think?

I have seen many articles lately about Narcolepsy, and it's symptoms and general information regarding this illness. One of the interesting things, to me anyway, are the differences in opinions about Narcolepsy and how it effects it's target. I have collected some opinions from various websites, and posted them below, with links, to see what you think.

Do any of these explanations seem accurate in your life? How does Narcolepsy effect you? I am so interested in the opinions of others on how Narcolepsy has changed your life. What is different since you have been effected by Narcolepsy?

Here are some snippets from various sites on the subject. The link to the actual website is included. Let me know what you think, OK?

Long Term Effects of Narcolepsy

From the website of Narcolepsy Network - Click here to go to site.
...The consequences of narcolepsy may be many and far reaching. Sleep attacks and cataplexy in public are embarrassing and can cause serious social and economic difficulties. Cataplexy may interfere with physical activities, and efforts to avoid emotions may lead to social withdrawal. Inability to work and/or drive may result in loss of independence, financial difficulties and a multitude of other problems. In these situations, a person can easily lose touch with others and become depressed...
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The following text excerpts taken from SleepFoundation.org - Click here for the exact page
...The symptoms of (and some of the drugs taken for) narcolepsy may affect your sex life. Sexual problems, such as low sex drive and impotency, may result from severe sleepiness, depression, medications or cataplectic attacks. These problems, especially any resulting from a new medication or changed dosage, should be discussed with your doctor....

...Narcolepsy symptoms can also result in a change or loss of employment, physical restrictions and social withdrawal. Loss of self-esteem, learning difficulties and depression can result...
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Below are a few words from the Aurora Health Care site, from an article intitled "In his own words: living with narcolepsy". The whole article is good. You can check it out, click here.

...I've had to make many lifestyle changes. I had to give up my military career and change jobs. I only swim in shallow water. I'm still a heavy coffee drinker, just not three pots a day. I take regular naps, generally after lunch, around 4, and after supper. I can regulate when I need a nap. And by taking naps, I don't have to take as much medication. Since emotions can trigger cataplexy, I have to walk away from confrontational situations or I may fall over...
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At the website of Health Central, here is what they have to say about the emotional and social effects of Narcolepsy. Click here to go to the website.

...The patient suffers emotional and social difficulties from the uncontrollable sleep episodes and cataplexy. Studies have reported rates of depression in people with narcolepsy ranging from 30 - 57%. (In the general population, prevalence of depression is 8%.) Studies have shown severe emotional and social dysfunction in all areas, including work, relationships, and leisure activities. One study reported that 25% of men with narcolepsy suffered sexual problems. Some experts believe that the psychological and social effects are more serious than those caused by epilepsy (which narcolepsy can be mistaken for)....

There are many opinions about the effects of Narcolepsy on one's life. We all have our own unique experiences and opinions. How does it effect your life? What area in your life that is effected by Narcolepsy do you find the most difficult to deal with?

I am really interested in hearing different experiences, and I would like to post some of them here, with your permission.

Well, everyone, have a great rest of the week, and oh yeah, have any of you seen the film "90 Naps a Day" yet? I got some interesting opinions from some of you who have seen it, and I hope to write a little about it soon. I haven't seen it yet, I am in the U.S, and I haven't found a way to see it, I have only been able to see some clips.

What do you do after you have tried everything?

What do you do after you have tried everything?

When your health is getting worse, and nothing that you try works?

Narcolepsy is so tricky, and I guess just like everything else, what works for one person, may not work for another. Anyone out there with Narcolepsy, have any advice? I have taken Dexedrine for about 5 years now, with no increase in dosage. I worked full time, up until approx. one and a half year ago. First I went down to part time, then I was let go. I got the award for employee of the year! How could they just let me go??? Even after all of this time, it is like it happened yesterday. I guess my job was my life. It was the only stable thing I had.

I am sorry if this a a depressing post. I just am letting it out...the cats out of the bag. I am not the "together" person that most think I am, and I am at a loss when it comes to what to do. I lost my job, my apartment, my car. I work part time now.

I know I am blessed. I just am getting to the point where I cannot imagine living like this for the rest of my life. I don't want to die, I just don't want to live like this. I have been independent for most of my adult life. I think when one loses this independence, it can truly wreak havoc on your self worth, or your perceptions of yourself. I want to be a active part, a useful positive part of this world again.

I know God knows what is going on, I just can't figure out what he wants me to do...

or not do.

Xyrem, and Jazz

So....What do you people think about this lawsuit against Jazz Pharma? I tried taking Xyrem at one time and I think that it was probably the scariest time in my entire life! I am glad that it has been such a blessing to so many with Narcolepsy! It just wasn't for me.

just a cartoon I appreciated....sorry about the quality...

Why Me? Depression and Narcolepsy - What I Have Learned

Why me?

Have you ever thought this, or said these two words?

I am a person who has Narcolepsy. When I was diagnosed with Narcolepsy, at first, I felt so much relief. I felt like finally, I know what it is! Finally, I knew why I fell asleep so many times when it wasn't normal. I knew why I couldn't focus on one thing for very long. I knew why my knees would buckle, and why all of the sudden I just couldn't talk! Wheew. After 14 years of wondering what the heck was wrong with me, I'm not crazy, or lazy, I just have Narcolepsy! WOOHOO!!!

And then came the hurricane. Why me? Why me? Why didn't the doctors test me for this 10 years ago? Why didn't they listen to me? Why did they just say "you have depression, that is why you are so sleepy." And all of the people in my life, they got so mad at me. They told me I needed to get more sleep and eat right. I remember people telling me everything from how selfish I was for not doing things that I should have been doing, to someone asking me if I had a drug problem. errrrrrrr. I got so mad. Mad at the whole world! Mad at God for giving me this illness!!

Today, thank God, I am not mad anymore. Ok, I admit, I still have my "not so pleasant" moments, and sometimes I do feel depressed, but I stopped blaming other people for just simply not knowing. I stopped the inner hate that I had for myself for not being able to live up to other people's standards. I started living again. One thing that helped was finally admitting to myself that I have Narcolepsy. I have limitations. I still am working on that one, but I learn more each day.

The really strange thing is that even though Narcolepsy is not my friend, it has been my teacher. I don't believe that God wants anyone to be ill, and some illnesses are caused by the way we care or don't care for ourselves. I don't know why I have Narcolepsy, but I don't think about as much anymore. If I ever start thinking about how bad I have it, it takes just a few minutes to remember how much worse it could be and how many other people in this world have so much less than I do. So many people suffer with so much, and I know that I am so fortunate.

I have learned that having an illness that is not easily visible to the eye is not easy. I have learned that someone telling me that they care and that they understand means more to me than anything anyone could ever say to me. And here's a little tip, If you ever want someone to know you really care, flowers and gifts are nice, but telling them is by far the most incredible, healing gift anyone could ever give and receive!!

I now feel that my illness has allowed me to relate to others with more compassion and empathy. And let me tell you, when I have a day that I feel awake, I mean really alive, I appreciate that more than you could ever know.

I ain't gonna lie, I do have day where I don't as if I really want to live. But, at the same time, I certainly don't want to die. I just want my life to be different, and I know that that is something that can only come from within.

I drive, I live independently. I can care for myself, and I am free make my own choices. I am not sick, and I am not crazy or lazy. I am blessed. I am not only a survivor, I am a conqueror!

Of course, if I had the chance right now to get rid of this Narcolepsy, I would jump and jump and jump at the chance to be Narcolepsy free!! But until that day comes, I thank God for everything that he has taught me, and teaches me from having Narcolepsy.

If you have gotten this far in reading...Thank you. I just want you to know, whoever you are, you can find good in the rough things in life. God loves you. There is a reason for everything...just do your best to use it all; It is a struggle, and we are all human, just do your best, change it around and turn it into somethin' good. You are loved. You are a living, breathing, human being. You have a purpose, and life is the journey in which the many purposes unfold.

Go easy,
Ja:)

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!

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".

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!💟💕