Narcolepsy: Idiocy vs Actuality
Today I was reading an article that a very special person took the time out of her life for. She took the time to let strangers see what it is like for her everyday living with Narcolepsy. It was not something she had to do but something she wanted to do in an effort to increase awareness. Being PWN's, (persons with Narcolepsy ) we already know there is a stigma attached to the disease. Yes, it is officially classified as an auto-immunological disease as well as a neurological disorder. I digress. Anyhow, after getting my official diagnosis, I began hearing all the want to be doctors give their assessments and opinions of what I needed to do and I just brushed it off. Reading some of the comments that I read this evening though were just on a whole other level, especially coming from complete strangers, so I am going to clarify some things.
Where should I begin? I think I will start with weight gain. Most PWN do not gain weight because they are too lazy to exercise. Also, it is absolutely idiotic to believe that symptoms of Narcolepsy are caused by lack of exercise and being overweight. Becoming overweight, in fact, is one of the results of losing hypocretins, a determinant factor in becoming Narcoleptic and which also play a role in the functioning of metabolism. I walk one to two miles daily and it does no boost my energy levels one bit. In fact, if I overdo it, it can set me back for three to four days before I am able to completely function again.
What most people do not understand is that Narcolepsy is a neurological condition that affects more than the sleep cycle. That is one the main affects, but it is, not the only one. With Narcolepsy, the hypothalamus is irreversibly damaged by the loss of orexins or hypocretins. According to studies, hypocretins have widespread anatomical projections throughout the central nervous system. They act primarily as excitatory transmitors. Although the primary functions of these neuro transmitters are sleep and arousal, studies also implicate that they are also involved in the functioning of feeding, energy regulation, metabolism, neuroendocrine regulation, cardiovascular system control, cognitive functioning, and pain regulation, amongst other things. Now, tell me again how we need to get up off the couch and exercise and we will miraculously feel all better.
Next, I think I will address the notion that being Narcoleptic means that you suddenly fall asleep all the time. Wrong! That is not the definition of being Narcoleptic. We do have sleep attacks, but some of those sleep attacks may last only a few seconds. Narcoleptics are pathologically sleepy. What an average person feels like after staying up 72 hours is what a PWN feels like pretty much 24/7. Most people say get more sleep, well the oxymoron of it all is that most PWN also suffer from insomnia. Even if we sleep, the quality of sleep is very poor. We go into REM stage sleep very quickly preventing us from going through all the sleep stages in an adequate enough amount of time for our bodies and mind to fully regenerate. Now, I would like some of you to explain to me again how going to bed earlier will make my world so much brighter, end world hunger, disease, and oh yeah, my Narcolepsy.
Let's see, what should I address now? I guess I will touch on hypnocognic hallucinations, night terrors and sleep paralysis, because, yes, GASP! they are a part of Narcolepsy. No, not everyone experiences them because we all have varying levels of Narcolepsy. I have very vivid, lucid dreams and mild Cataplexy and sleep paralysis sometimes. I know some PWN who don't have Cataplexy but who have hypnocognic hallucinations. I was talking to a friend a few days ago about some of the artwork of some PWN and how scary some of it is because it comes from their hallucinations. He told me that made no sense because Narcolepsy was falling asleep and I realized how little he knows about what I have. Anyway, I digress again. These things are a very real and very prevalent part of Narcolepsy. These are not every now and then occurrences for most but daily or almost daily occurrences.
If there is one thing I could get across, I think it would be that PWN are always in an in between, wide awake dreaming state. When we sleep, we never fully sleep. When we are awake, we are never fully awake. There is so much more I could write, but it would be a book and I am really sleepy.
I will say this, I was really hurt and angry when I first read some of the comments. After a while I thought about it though. Those of you judging and giving your unsolicited, uneducated opinions based on some fictional movie you saw made in 1991 that had a Narcoleptic character, or based on the symptoms of your brother's best friend or the one Narcoleptic classmate you had in the fifth grade, that just makes you look dumb. Even with the deterioration of my cognitive thinking, I am still smart enough to figure that out. So, I will continue to educate those who truly want to know and do so with the understanding that Narcolepsy is a part of who I am. It does not define me, but it is a part of me, just like ignorance does not define some people. It is just a part of who they are.
Here is a link to the article that inspired this blog. Thanks for being an inspiration Claire.
Where should I begin? I think I will start with weight gain. Most PWN do not gain weight because they are too lazy to exercise. Also, it is absolutely idiotic to believe that symptoms of Narcolepsy are caused by lack of exercise and being overweight. Becoming overweight, in fact, is one of the results of losing hypocretins, a determinant factor in becoming Narcoleptic and which also play a role in the functioning of metabolism. I walk one to two miles daily and it does no boost my energy levels one bit. In fact, if I overdo it, it can set me back for three to four days before I am able to completely function again.
What most people do not understand is that Narcolepsy is a neurological condition that affects more than the sleep cycle. That is one the main affects, but it is, not the only one. With Narcolepsy, the hypothalamus is irreversibly damaged by the loss of orexins or hypocretins. According to studies, hypocretins have widespread anatomical projections throughout the central nervous system. They act primarily as excitatory transmitors. Although the primary functions of these neuro transmitters are sleep and arousal, studies also implicate that they are also involved in the functioning of feeding, energy regulation, metabolism, neuroendocrine regulation, cardiovascular system control, cognitive functioning, and pain regulation, amongst other things. Now, tell me again how we need to get up off the couch and exercise and we will miraculously feel all better.
Next, I think I will address the notion that being Narcoleptic means that you suddenly fall asleep all the time. Wrong! That is not the definition of being Narcoleptic. We do have sleep attacks, but some of those sleep attacks may last only a few seconds. Narcoleptics are pathologically sleepy. What an average person feels like after staying up 72 hours is what a PWN feels like pretty much 24/7. Most people say get more sleep, well the oxymoron of it all is that most PWN also suffer from insomnia. Even if we sleep, the quality of sleep is very poor. We go into REM stage sleep very quickly preventing us from going through all the sleep stages in an adequate enough amount of time for our bodies and mind to fully regenerate. Now, I would like some of you to explain to me again how going to bed earlier will make my world so much brighter, end world hunger, disease, and oh yeah, my Narcolepsy.
Let's see, what should I address now? I guess I will touch on hypnocognic hallucinations, night terrors and sleep paralysis, because, yes, GASP! they are a part of Narcolepsy. No, not everyone experiences them because we all have varying levels of Narcolepsy. I have very vivid, lucid dreams and mild Cataplexy and sleep paralysis sometimes. I know some PWN who don't have Cataplexy but who have hypnocognic hallucinations. I was talking to a friend a few days ago about some of the artwork of some PWN and how scary some of it is because it comes from their hallucinations. He told me that made no sense because Narcolepsy was falling asleep and I realized how little he knows about what I have. Anyway, I digress again. These things are a very real and very prevalent part of Narcolepsy. These are not every now and then occurrences for most but daily or almost daily occurrences.
If there is one thing I could get across, I think it would be that PWN are always in an in between, wide awake dreaming state. When we sleep, we never fully sleep. When we are awake, we are never fully awake. There is so much more I could write, but it would be a book and I am really sleepy.
I will say this, I was really hurt and angry when I first read some of the comments. After a while I thought about it though. Those of you judging and giving your unsolicited, uneducated opinions based on some fictional movie you saw made in 1991 that had a Narcoleptic character, or based on the symptoms of your brother's best friend or the one Narcoleptic classmate you had in the fifth grade, that just makes you look dumb. Even with the deterioration of my cognitive thinking, I am still smart enough to figure that out. So, I will continue to educate those who truly want to know and do so with the understanding that Narcolepsy is a part of who I am. It does not define me, but it is a part of me, just like ignorance does not define some people. It is just a part of who they are.
Here is a link to the article that inspired this blog. Thanks for being an inspiration Claire.
http://www.dailymail.co.uk/health/article-2605838http://www.dailymail.co.uk/health/article-2605838/My-narcolepsy-means-I-nap-FOUR-hours-day-Mother-says-shes-tired-fallen-asleep-ON-moped-loud-speakers.html#comments
Thanks for taking the time to write this. Its a great post. Looking forward to the next one :)
ReplyDeleteThanks Claire and thanks for the article that prompted me to write it.
ReplyDeleteThanks for sharing this Sharon. :)
ReplyDeleteI also read the comments and I was totally disgusted with some of them. How dare they judge someone who they don`t know. Sure, we`ve all heard the stories about the cousin`s wife, niece,neighbour etc who has worked all their life. Well bully for them because it`s all I can do to drag myself out of bed and remember to push food into my face every so often. Well done you for trying to explain. I`m proud of you and just ignore the ignorant.
ReplyDelete