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:-)

.

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......

 

77  Days

On my gluten free journey

 

How it all began

 

Narcolepsy......What a strange thing...

People think of narcolepsy as the character in the movie Rat Race, or Deuce Digalow male gigolo, or some equally funny phenomenon......

 

"Oh ya I seen that on some movie or other"......
hilarious isn't it??????

Yes it is funny at times.

 If you have narcolepsy, you really do have to learn to laugh at yourself.....

For me narcolepsy started with EDS (excessive daytime sleepiness),

 but i was living in Chicago and burning the candle on both ends!!! to say the very least.

 

I was working two jobs, and had the social life of at least two people too.....

So when I'd be nodding off behind the wheel, 

 I would have done the old, winding down the window, turning up the radio, constantly drinking red bull and or coffee and thinking

 "I must go to bed early tonight"

 

I can vividly remember driving my little VW cabriolet that I called "Seamus", around that beautiful city and having to pull in and shut my eyes for literally two minutes.

Not the safest thing in the world to be doing in any neighbourhood, much less a lot of the neighbourhoods I'd have to drive to, and through showing apartments to clients.

 

They say you look back with 20/20 vision.

Obviously the "they" that say that do not have narcolepsy!!

It was only by talking to other people with narcolepsy,

 that i've begun to realise how much this condition has jumbled my life and my memories.

Memories that I should have, I don't!!!

 and yet, I have memories that never actually happened.

Thanks to the old hypnagogic hallucinateations.
 

So lets start there next time.....

  

 

 

 

 

Two months today
 

That my dears is a total of sixty one days,

living the good life...

 

 

Lets go back to last week,

I had just finished writing the blog.

Mike and Beth were savaging into some sweets,

or candy, to you the the US of A....

"Ah sure" I said "I'll have one",

seriously they were tiny.
 

I swear within ten minutes I was out for the count,

I was basically in and  out of consciousness all evening.

It honestly felt like I was coming out of  anesthetic..

Id wake up, look around and "bang" out again.

So that was about 4 o clock Sunday evening,

I ended up going to bed around 10 and had a very fretful nights sleep.
 

Thankfully I was back on track by morning.
 

So I,m wondering, if I had taken more, would It have lasted longer????

I hopefully wont be finding out any time soon!!!

 

Apart from that, I am finding the GF part easy enough.
Its the low carb thing that's really beating my ass.

I haven't really been substituting gluten products for GF products,
I'm just generally eating foods that are naturally gluten free,
 and while its working for my alertness, and brain fog,
 I hear from other narcoleptic people that low carb's along with gluten free is even better results.
 

I do great for like two days then end up eating some Gf carbs!!!!

And so the circle begins again!
 

Considering I have reduced the amount of carbohydrate I'm eating, I haven't lost any more weight!!!!!
Bad times!!!
But on the other hand!
 This is the first time, in my formally bad recent memory, that my weight has been steady!!!
Good times!!!!

Especially considering I'm just two weeks off the smokes!!!!
Good times!!!
So next week I'm going to try harder with the low carbs....
Maybe I,m getting greedy, and wanting too much!
But whats wrong with dreaming....
And whats wrong with trying to make your dreams a reality!!!!
I really feel I have came so far in the last two months. 
 So lets see where else this escapade can bring me!!!!

Ho Ho HO