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Short Video Addressing Narcolepsy For My Film Class


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#1 ABitColtish

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Posted 11 November 2013 - 09:42 PM

Hello, I just joined this network after stumbling upon it a few days ago while researching for my project. I am in a beginner's Video Production course at my college and have been assigned the course's final project, a 3-5 minute video about anything we want. I have decided to create a video about narcolepsy, /very briefly/ discussing topics like what it is/what the symptoms are, and how it affects PWN's daily lives/what it's like trying to deal with it, and how PWNs are perceived by their peers, especially in a culture where everyone is overworked and sleep deprived. However, I am very new to the discussion of N, and am not sure whether my own behaviors and experiences are congruous with those of other PWNs.

 

I got an ambiguous diagnosis after my sleep study in Aug. 2013. My overnight sleep was interrupted for two hours (I am prone to waking up in the middle of the night, but only for a minute or so; it's just that the air conditioning was on full blast and blowing on my face and kept me awake for a while). My naps were also confusing: I slept in only 3 of 4; the first took me nearly 15 min to fall asleep, w/ dream, the second took less time but no dream, and in the third, I fell asleep after 2 min and began dreaming almost immediately. So my experience with Narcolepsy has been a little confused. Also, it was not until after my diagnosis that I realized I also experience hallucinations and mild cataplexy (I occasionally lose control of motor functions like use of my jaw and tongue). I generally only get hallucinations when I am sleep deprived (on top of N --read: midterms and finals week) and the muscle weakness is similarly a result of lack of sleep, or very occasionally when I get excited about something.

 

Reading some forums over the last few days has been very educational. So some PWNs have a hard time going to sleep at night? I am creatively/intellectually very active around 8 to 9pm, and am capable of keeping myself up until early hours of the morning --I had thought that this would be a case against narcolepsy, but maybe not? I also had not realized that PWNs experience some symptoms of ADD. Since I was in middle school I have suspected that I might have ADD and took a couple online tests, where I was declared to have mild ADD. PWNs are also likely to experience anxiety and depression? I know I have experienced depression since I was young, but I was never sure about anxiety. I often feel very anxious and paranoid, but never considered myself to have it officially (as defined by medical expertise, and not by the use of the word in American vernacular) because my research of it always seemed to describe much more severe cases.

In short, I have spent the last 7 or 8 years suffering from little bits or mild versions of many disorders -or maybe just a complicated, collective /something/- and worrying that I am a hypochondriac.

 

I would very grateful if anyone can confirm or deny any of the above. It will help me better understand N in general, but I can also know what to include or not include in my video project.

 

Also, would anyone be willing to describe their emotions/feelings in dealing with narcolepsy?--

Do you fear being labeled a hypochondriac?

Do you ever feel depressed about having N? (Sometimes I'll sleep through and alarm and miss an important class, and I feel helpless and hopeless in my lack of control over my own body. I also get sad when I fall asleep during family gatherings, because that means less time to spend with loved ones.)

Do you feel guilty or ashamed when your inability to wake up makes you miss a meeting with friends, or a some other event?

Esp. before you were diagnosed, have you ever felt ashamed that you slept so much (willingly or not)? Or that you had no right to sleep 9+ hours when almost no one else has the time to (not that you do, either)?

Do you feel frustrated and/or ridiculed by friends who don't understand?

Do you think that PWNs should be given Disability services or lenience? (Do you wish that your authority figures would do something more than just sympathize with you? My professors feel bad, but they don't offer to lighten my work load.)

When working tiredly, late into night, my friends tell me to go to bed and wake up early to finish. Does anyone else refuse this option because they fear they won't wake up in time to do so?

Have you ever felt isolated or alienated from others by N?

"Normal" people sleep for 1/3 of their life --because PWNs need to sleep more, do you ever feel like you have comparatively less life to live?

Do you ever feel angered or frightened by the fact that you sometimes have no control over your body? (Do you feel powerless?)

Do you feel stupid, or berate yourself, for falling asleep and/or not waking up, even though you know you have N? (Do you still feel obligated to follow normal society customs/behaviors, even though you are at a biological disadvantage?)

Do you ever feel emotionally/mentally unstable? When you don't get enough sleep, do you ever feel like you're going insane?

 

I would much appreciate anything anyone has to say about this. I thought that in all of the discussions and forums, people rarely discuss their mental and emotional health, so I am very curious to hear about this side of things. Please, only share what you are comfortable with, of course. But whatever you have to say, I would love to hear :)

 

Thank you so much! I'm hoping to spread some awareness through this project --the video is not going to be any Oscar winner, of course, but it's an experimental start. And I can always try again in the future.

 

-Em



#2 Ferret

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Posted 11 November 2013 - 10:18 PM

It took me three to five minutes to read your post full of questions so I really don't think that you can cover the material which details the answers in a three to five minute video. ;)
It's a complex diagnosis with varying degrees of severity and no two people experience exactly the same symptoms or relief of those symptoms in exactly the same way. Throw in cataplexy and it further complicates the situation.
I don't think a three hour documentary would manage to explain it well. Sorry for raining on your parade.

#3 ABitColtish

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Posted 11 November 2013 - 10:18 PM

I'm laughing so hard right now, because I just realized that I forgot to mention that I also have problems with short term memory, like misplacing items I'd had only minutes before or word retrieval.

 

I always thought that the word retrieval issues and my bouts of muscle weakness in my jaw and and tongue were just me being an awkward introvert and stuttering. Does anyone have experiences with symptoms with narcolepsy that they initially brushed off as "normal," because they thought they were something else? It was difficult going through the diagnosis, because my doctor would ask me questions and I would say "no" to a lot of things, only to realize, a month or two later, that I probably actually /had/ experienced those symptoms, and just not had been able to recognize them as such.



#4 ABitColtish

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Posted 11 November 2013 - 10:28 PM

Ferret-- no worries, I'm not expecting to cover all of these things in detail, and some items may not be mentioned at all. A lot of things will probably just be listed in passing through Voice Over narration, somewhat unified by a visual concept. I was just curious about other people's experiences, and whether what I have described above are in fact some experiences with narcolepsy (and not results of other issues, or just my imaginings); and I like to research thoroughly so I know all my options, and then narrow them down to what will be most effective or convenient.

 

P.S. I think you made a comment on one of the other posts about PWNs being quiet protestors because they would either be quiet and sleepy or afraid to get too excited. I couldn't stop laughing over that image in my head.



#5 Ferret

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Posted 11 November 2013 - 11:16 PM

I did make that comment. I guess, for the most part, we suffer silently for a long time because we can't figure out what's going on with our bodies. Hank has stated that we get so used to dealing with feeling tired that it becomes "normal" for us...kind of creeps up on us.

I didn't "do" anything to deserve this so I sure don't feel guilty. It's not as if I pickled my liver by abusing alcohol for example.

I, IMHO, am lucky. I don't have symptoms of ADD and I never have a problem sleeping through the night EXCEPT for when I've ingested a lovely toxic chemical like MSG. Unfortunately, I remember everything and consider it a curse 'cuz I worry about the day that my personal hard drive is full because I don't seem to have a delete button for trivia.

I have a great husband and lots of good friends who understand. I'm grateful for their support.

These internet forums are also a wonderful source of support and information. They are empowering because you can state your innermost fears anonymously or share your own experiences. It's good to know that we are not alone.



#6 ABitColtish

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Posted 11 November 2013 - 11:32 PM

Awesome, thank you!