Narcolepsy - short film about me

sheepysquirt · Joined: 06 Mar 2003 Posts: 3

Check out this short film, it's about my life, living with Narcolepsy.

... don't let that wonky piercing distract you from the main content!!! Wink

http://www.facebook.com/video/video.php?v=123028724388979&oid=35618671995&comments[/code]

sleepysusan · Joined: 01 Nov 2009 Posts: 169 Location: St. Paul, MN

Thanks for posting the link. Nice video. I've always wanted to try belly dancing, but just never figured out how or where to go to learn. It looks like fun, though.

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sheepysquirt · Joined: 06 Mar 2003 Posts: 3

Thanks for all your comments!

I will speak to my neurologist about Xyrem if you think that might work, I looked into that before a few years back but for whatever reason at the time we decided against it. I think at the time it was something to do with getting it prescribed here in the UK.

Also unable to have any kind of day job, I do dance and teach but I am limited to how much I can manage, my tiredness is so extreme I tend to burn out every few months as a result of me pushing myself to do all these things but it's a price I am willing to pay. Unfortunately when I am at burn out point, the venlafaxine doesn't work as well either so the cataplexy comes back with a vengeance. I do a hell of a lot though despite all this, I just learned to do it in my sleep.... I have a t-shirt that says 'narcoleptics do it in their sleep' I thought it was quite amusing and sums me up very well
If it were up to me I would dance for hours every day and teach loads more classes but I just can't manage that, I know my limits...don't always accept them of course but that's just me all over...feisty and stubborn.

My piercing is no longer wonky by the way... the bar was just too long and made it drop on one side.
I have also taken most of my piercings out over the years, although I still have many, I have significantly less than I did at the age of 16

as for music, I like such a huge variety of music I really wouldn't know where to begin, I definitely have a huge thing for 80s alternative though, my 30th birthday was last week and the theme was 'it was acceptable in the 80s'
I was ended up as a weird mix somewhere between Cyndi Lauper and Siouxsie Sioux and I dressed my friend up as Robert Smith, haha

The piece I was playing in the short film is one of mine actually...totally not at all 80s but definitely dark!
you can hear my music here if your interested:
http://www.facebook.com/pages/Tribal-Infinity/7851484161

sleepysusan - Is it MN as in Minnestota where you are from? If so check out these Belly dance links...
http://www.totallynortherntribal.com
http://tntbellydance.tribe.net

dejavu - in Belly dance world, it's NEVER too late!
http://manhattantribal.moonfruit.com/
http://tribes.tribe.net/manhattantribal

Winter Blessings and Sleepy Shimmies

Enjoy!!!

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ayurkanin · Joined: 22 Mar 2010 Posts: 103 Location: Texas

sheepysquirt- I'm proud of you for making that video. And I'm glad your life is better now. Definitely try Xyrem, though. It's worth a shot.

allright · Joined: 29 Jul 2008 Posts: 344

Brilliant. No offence to what people are advising but did I not hear her say she has her life back due to belly dancing. Xyrem is a horrible and maybe a risk to some people and should only be taken as a desperate need. Medication is good if you need it but it always has conscequences.

I know Xvrem its helping people but this lady seems to working through her condition. Narcolepsy is mostly dealt with naps. This young lady has a serious condition of Narcolepsy as she has acquired it at an early age. Probably she has had it since birth. Xyrem is still on trial and lets not forget Provigil track record.

I know you mean to help her but she is quite young and has yet to learn to manage her Cataplexy with a cognitive approach. As we get older we manage our emotions through experience. I am not talking about suppressing her emotions but managing them. Getting to know her body which she wont if she mask her emotions with drugs.

She may need drugs so your advice may not be incorrect.

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dcullins · Joined: 05 Aug 2007 Posts: 125 Location: Reno, Nevada

bravo dejavu!!! and ditto!! i can live now Laughing

dcullins · Joined: 05 Aug 2007 Posts: 125 Location: Reno, Nevada

Well said

You should be proud!

narcosleepy · Joined: 11 May 2005 Posts: 14 Location: Washington State

Thank you so much for sharing this video. When you spoke of finally having drive and passion again, I teared up. Good for you for finding something that makes you able to cope with all the rest of it.

I think Allright's point is that just because some treatment has worked well for one of us does not mean that we should assume that another one of us would benefit from it, or that they need it. I have to say that I agree that there is a benefit in learning your body through experiencing your symptoms. I've learned more about myself by experiencing my narcolepsy than I ever have by drugging it away.

sheepysquirt · Joined: 06 Mar 2003 Posts: 3

Been away from here for a while but just wanted to wish you all sleepy blessings for 2012!!!
My partner got given a t-shirt for Christmas... I found it rather amusing, although I thought it would be far more appropriate for myself.
I found a link to a ladies version of the t-shirt which I am considering buying if I don't get round to making one myself.

Here is the t-shirt... enjoy Wink

http://www.zazzle.co.uk/isleep_theres_a_nap_for_that_tshirt-235124571724307862

Seminolegirl · Joined: 21 Nov 2011 Posts: 34 Location: FL

Hi Sheepy! I just saw your video for the first time and enjoyed it. You explained Narcolepsy very well! Happy New Year!

NappyDan · Joined: 03 May 2005 Posts: 682 Location: Indiana

Somewhere on the WWW the is a video of a young British girl (now an adult) with N and sever C. Both your video and hers bears out the fact that PWN are able to overcome C if they concertedly focus. The girl was able to perform complex ballet routines but on completion she would collapse.