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".
10 comments:
This sounds like it is going to be a interesting blog. I look forward to reading more.
Adios,
Gilbert
HI, I found your blog & I was wondering if I could ask you a few questions about Narcolepsy for my Health Project! My email is, hime_hime@ymail.com
hope to hear from you!
Thank-you!!
P.S Don't worry, I won't ask any personal questions or anything like that it's strictly only for my school project
I have narcolepsy also and I found your blog while researching possible jobs for narcoleptics and healthcare we are elligable for. sorry about the spelling it's about my nap time. nice blog btw. (:
Hi,
It's so good when I find others who can relate to what I'm going through.I have narcolepsy as well and it can so hard throughout the days! I'm glad to have come accross your blog because it's all true with everything you wrote about people being different and how they know themselfs.I can't stand when someone who knows NOTHING about narcolepsy judges me or has the nerve to laugh and crack jokes.I wish more people knew about the struggles we go through on a daily basis.Were not alone in this world but people try to make it feel this way.It's so nice to have found your blog,I will be reading.
Thanks
I am in a training to become a certified NJ trainer and I have chosen my lesson plan to be on sleep disorders. I have chosen this b/c i am in a class with 12 other workers for the state of New Jersey and we are seated in a u shape position. As soon as I saw the layout of the chairs I became mortified and even though some of it may be in my head I have fallen asleep during the training several times and have woken up to see others staring at me. So again I am doing my lesson for the class on sleep disorders starting with things such as insomnia and sleep apnea and ending with Narcolepsy and explaining that I am not just tired or lazy but that I was diagnosed with narcolepsy with cataplexy about 15 years ago and explaining the ordeals of dealing with this diagnoses. I love your blog and would love to talk and share stories. My email is jenniferarcher08@comcast.net
Hello!
I enjoyed reading your post and discovering more about Narcolepsy! I am currently in a Sleep and Wakefulness course, as part of majoring in Psychology and Brock University in Ontario, Canada and would absolutely love to establish contact with you to potentially ask you further questions or get first hand clarification from you on anything that confuses me as I do research for my paper. Would you be willing to help me out? My name is Benjamin MacMillan and would love to hear from you ASAP through my email benjamin.macmillan@gmail.com. Best regards,
Benjamin
Hi, I just came across your blog today and found it very interesting. I know you listed several myths about the disorder itself and you said you would explain cataplexy later on. I suffer from narcolepsy with cataplexy, it is one of the most frightening experiences I will ever have, and it's for life. Having the feeling of knowing you're going into a sleep attack as your body slowly becomes paralyzed in your speech becomes very slurred. No matter how hard you try to fight it you can't. Thankfully I have several friends and a great boyfriend and kids who understand that I go through this and I cannot control it. And I'm grateful for that. One of my worst experiences, was I was driving my son to school and you have to cross a bridge and I could feel it coming on, I was so scared and I tried not to scare my son. I had to pull over to the side of the road and allow my body to go through this process. As a result my son was late to school, it was unexcused. Another experience I had was in the lobby waiting for my appointment with another doctor. I had a sleep attack come on, when I came out of it, people around me thought that I was on drugs. So for all of you people who read this blog keep in mind that if you ever see someone just all of a sudden look like they are high on drugs, theres a high possibility that they could be having a sleep attack.
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