23 December 2012

Its christmas eve folks
 
 
I said I'd start on hipnagogic hallucinations didn't I?
 
Well I'm not, so there!!!!!
 
I've gotten a little side tracked....... so this is what your getting:-)
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The first time I heard the word Narcolepsy was in a  great film called "The Match Maker".
 
The scene depicted a load of people around a table, the old guy was introducing them, and when he came to one of the people, he said, "don't mind our Frankie if he drops off, its just the ould narcolepsy" as he said it Frankie passes out on the table.....
I actually started using that line, for all my mess ups.... I would be late for work, and my excuse would be, " oh its the ould narcolepsy"
I'd fall asleep in a pub or somewhere I shouldn't and I'd say...." it must be the old narcolepsy"
 
Now keep in mind this was long before I knew there was anything wrong with me, that a good nights sleep, and/or taking it easy on the socialisisng wouldn't sort out.....
I had no idea, nor did I give a dam what narcolepsy was..... 
 It was just falling asleep in ridiculous places, wasn't it???
 
It was at least three years later before I would really know what narcolepsy actually was.....
Talk about mocking is catching!!!!
some of you will have read this next piece before, so sorry about the repeat....
But I do really believe we can put the truth about narcolepsy out there.....
Its not just something to be laughed at, although it does have its moments :-)
  
 
 
 
 Time and time again I'm hearing PWN say that no one understands ""us"...
 And while I do agree,
 I for one am constantly telling people about it.... And yes I get the " oh one time in band camp I fell asleep" lol... But I also get some genuinely interested people, who ask questions, and listen, and are fascinated by the condition... 
None of them ever realized it was such a complex condition either.. 
Ya, chances are they forget all about it as soon as they are out the door. I think we all can positively up people's knowledge about the day to day living with narcolepsy.
For those who don't know me, I work in a barber shop so I do gave a captive audience..:-)
But when people see that you do work, drive, and I manage to cut their hair without nodding off it dispels there preconceived notions of narcolepsy... So more people will know more about it, if and when they meet someone else with it.... They may be an employer ??? And so would not be afraid to hire someone with narcolepsy.... They could be a teacher??? And so see that a student might need more accommodations...
Because now they understand that it's not just about falling asleep !!!!!! I personally would be much more embarrassed if people thought I was just dopey, forgetful, or drunk falling down, or on drugs ??? Than someone who is living with narcolepsy....
We cannot be embarrassed or ashamed of what we have....
To employers, teachers, and or anyone who will listen.... How can they help us if they don't know what's wrong with us..
Tell people about it.... Don't apologise for having it.... We never asked for it.... Tell them firmly what can help.... Like I told my boss, when i applied for my job..... " ya I'll cut hair!!!  but every now and then I'll have to go in the back and put my head down for 5/10 minutes... Without being disturbed...."  
If they tell me I look tired, I tell them about why I'm tired...
 I tell people "if I fall down laughing, help me down, don't try and keep me up.... And make sure I'm not lying on anything that can hurt me...." 
I tell them how I'm fully conscious when I'm having a cataplexy attack. 
So they are not scared when it happens


 "If I go into automatic behaviour snap me out of it"
Make a loud noise, of "poke" me.....
People don't see it as a big deal if they know what to do......
We have narcolepsy... But we also have so much more to offer......