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:-)
.
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......

 

18 December 2012

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.....
  
 
 




 

01 December 2012

 
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

    
 


25 November 2012

56 Days
And counting
 
 
Well folks, 56 days, can you believe it..
I am a week off the ciggies today.
 
The electronic, rechargeable cigarettes are fab.
 
Who would want to smoke real fags, when you have these as an option....
 
The only down side of them is the charge doesn't last the full day.
But to get over that problem, I bought a spare...
 
But then I am a clever bunny ain't I.
 
 Christmas is around the corner.
And do ye know whats been frying my brain???
 
Roast Potatoes!!!!!
 
I don't know how ye all cook um,
But in our house they're par boiled,
 then tossed in flour,
 then put in the roasting tin in hot goose fat...
 
Did ye hear me????
 
Tossed in flour!!!!
 
How else am I going to get that crusty, crunchy finish on them????
 
I'm telling ye, this could make r break Christmas for me...
 
I can do without anything.... but my crunchy roastie's,
 that's asking too much.
 
I've had a great week this week again.
I discovered the restaurant beside my work, make gluten free deserts.....
so maybe the week wasn't such a success after all..lol
I only had it one day though, mmmme panacotta...
soooo goood
They also have chocolate cake....
 
I have to say it really doesn't bother me,
  for the most part anyway,
eating gluten free..
I was at a child's birthday party yesterday,
chicken curry, buns, cake, cheese cake...
All I could say was
 " no, no ,no, no thank you"!!
 
And it didn't knock a flither out of me...
I cant think of anything else this week for ye,
so I'll sign off now
 let me know if ye have a cure for my roasties!
 
marionxx
 
 
f 

17 November 2012

17th of November
48 days gluten free.
 
 
That's nearly a lifetime.....
Well I told ye last week that I was back on the anafranil,
 just 10mg and you know what!
I've had a great week.
 
And if taking one tablet,
 and being gluten free keeps me this good,
and I don't need to be anal about what I eat,
as long as it is gluten free.
 
Then I'll take that pill....
 
If you had told me 49 days ago that I would only be taking one pill during the day,
I wouldn't have believed it....
And so my friends.....
 That is progress....
 
I'm loving my new life.
I am slowly getting on top of all the jobs that had lived on  my proverbial long finger...
 
procrastination will soon be a thing of the past.
 
I have so much to get through here on the house.
 Jobs that I had started and never got to finish.
I cant wait to get started on them.
 
I didn't have any cataplexy this week,
and apart from my 20min nap at lunchtime...
 
No other EDS!
 
 This weeks project is going off the ciggies...
I've got my electronic cigarette and was puffing away on that today.....
 
So cross your fingers everyone....
 
This is way harder than going off gluten
 
 


11 November 2012

41 Days

 
 
Well folks do you want the good news, or the bad news???
 
Well my good people.... the good news is.... I finally went off the last of my antidepressants last Sunday the 4th of November...
 
The bad news is....... I went back on it today, the 10th of November....
 
I had a tough week, but still nothing compared to b4 gluten free!!
 
I had an appointment with my bio-energy guy on Monday.
He was delighted with my progress to date..
And I have to admit, I was kinda chuffed myself too!
I really wanted to be at least day-time med free by now,
 but I'm just not controlled enough without it!!
 
I fell in a heap in the bank on Friday.

 When yur man was telling I'd have to email this one and that one...just to set up a direct debit...
I was just thinking!

 "ah sweet mother of f***,
I just want to pay a shaggin bill,
not write a letter to the friggin queen"

Well as anyone who has experienced cataplexy attacks will know!

 You can't just think things with out consequence's!!!

Just that thought was enough to have me slum pt over the counter....

The next thought was!

"OH shit, its a long way to the ground,
oh crap I hate tiled floors"

Meanwhile, I could feel yur man looking at me!!
That became my next thought
"oh Jesus yur man must think I'm a freak"

Then there was no more time for thoughts......
Bang I was on the ground, contents of my handbag all over the place......

A hysterical woman, didn't know should she say a rosary or call an ambulance...
Instead she just roared so no-one could miss the very ungraceful, me in a heap on the ground!!

And I was right about the tiles!!!!


 But guess what????
The lovely man who couldn't do anything for me before,
 set up my direct debits, and anything else I wanted done, without the need for all the emails and sh*t......

Happy days...


I think next time I need help with anything, I'm just going to lie on the floor and let them do it for me!!
lol

But it does really give a great opportunity to tell people about narcolepsy!!!!
I'm a one woman awareness campaigner!!!
I really did struggle this week though.
I was even more tired than I had been since going gluten free..... 
So I bit the bullet on Saturday and took 1 10mg anafrinal.... 
I think I will stay on it for a while more.

I guess 10mg of  day time medication is a lot better than 640mg of medications per day.....

Anyhow...
I will love ye and leave ye...
I'v got to catch upwith things....

chat ye later....
 
  
 

 

04 November 2012

DAY 35 DAYS DONE!
 
And the dog just ate my gluten free pizza!
 
That was my X factor party pizza!
aaaaahhhhhh
 
 
 
Let me tell ye she got a taste of how mad I was...
 
There I was chasing her out the door with the floor brush, and down I started to go...
Damn cataplexy.....
I didn't go down fully, and boy was I mad.!!
MY FECKIN PIZZA
 
It just goes to prove that this "diet" is working..
Previous to 35 days ago, I would be eating the floor.
 
Oh and I went off that pesky last antidepressant today....
So we will see how this week goes.....
Hopefully I've finally nailed it... 
 
I still had my X factor party!!
 
I had bread rolls in the freezer, so I made Pizza bread, and big flat mushrooms with cheddar cheese and bacon bits.
And a glass or two of vino!!!!
Jeez was X factor sh** though!!!!!
 
The rest of the week was brilliant though.
I honestly have another two to three hours every day.
Imagine!!!
 
 That's like having an extra day every week,
and I still don't have enough hours in the week yet! 
I,m so looking forward to all that's ahead of me.
 
If even one more person gets the results I have gotten.
If one person gets their life back.
I,ll keep blogging, keep going on, and on, and on about gluten free.
 
But remember there is either gluten in something,
or there isn't!!!!
 
Your either gluten free, or your not!!!!
 
Think about it!!!
 
 
 
 
 

31 October 2012

Happy Halloween
 
 
Well you'd want to see the big bag of trash my daughter is wading herself through....
Mammy isn't even helping her this year...
And to make matters even better,
Its not even bothering me!!
 
I had to settle for yummy fish cakes made by my own fair hands...
 
I've always loved Halloween. 
 Until nine years ago,that is,  when my Mam decided it would be a good evening to drop dead.
She was only 57 years old, and it was completely out of the blue.
I,m only telling ye this as I was on so much medication at the time I really didn't even have a reaction to her death.
That's the thing!
 I had to take antidepressants to control my cataplexy, which  it did.
My cataplexy was about 85% controlled, which was great but it came at a huge price....
I was completely numb to everything.
Being that untouched by sadness,
 leaves its own mark.
Sadness is an emotion we have to go through,
 even if its just to appreciate happiness??
So I have just one more antidepressant to get off, Then my feelings will be my own....
Good, bad, or indifferent..
 
This week has gone really well so far.
My energy is way up.
My cataplexy is at about 75% controlled,
And apart from taking one 20 minute nap a day, I've had no EDS at all.
 
See yawl.....
 
 
 
 
 


28 October 2012

 

Well folks
 
I've been a donkey
Sorry I've not blogged all week.
But I got well and truly glutened!!
Who knew milk shakes were dodgy???
And wow did it hit me like a ton of bricks..
 Monday was a crap day, dozy all day.
I didn't take any day time meds,
so I wasn't sure if it was withdrawal from the antidepressant, or gluten...
Tuesday I was working, and still felt like crap.
I was even told a couple of times....
"jeez Mar you look like shit"
People are so kind...
Had my usual nap at lunchtime, but had to have two more emergency naps.
Tried to write a blog that evening but I was asleep before I started..
By Wednesday I was coming around..
But still far from my former glorious self.
I was still unsure If it was gluten and or going off the meds....
I was also toying with the idea that I possibly had a bad batch of xyrem..
So Thursday I was feeling much better but my cataplexy was playing up!!
So I bit the bullet, and took 10mg of anafrinal..
So Friday I was deffo back on track...
Such a busy day at work,
 which usually has the extra (take the piss out of Marion)
and Friday did not disappoint....
And I didn't buckle once....
Ahhh but Saturday.....
I had the, I don't know what to call it???
 
I was in aw of children, and the parents I met.
Those who, done the responsible thing for their families, and for at least one girl, for the public.
Parents who guided by our government,
brought their children to get the swine flue vaccine, Pandemrixs.
 
Only to be struck down with full blown narcolepsy,  as a result.
 
One girl I met, was a nurse and had to get it to protect the public???
 
I swear I am nearly crying now, thinking of how strong, these 40 odd people affected,
along with their families are....
 
The main thing that struck me was their positivity, and union, in looking for ways forward.
 How to make the best of the situation they have found themselves in..
 
So I was asked to speak to the kids and parents about living with narcolepsy!
  My experience this last month of how doing something as simple as cutting gluten from your diet, can help so much. 
If it helps even one of those people get their life back on track that would be so amazing...
I was nervous to the pit of my stomach, 
 meeting especially the kids. 
 While I did have a five minute snooze, and a few miner cataplexy attacks,
 I couldn't believe I didn't go down...
Well folks I gotta go now...
I'm hitting the town tonight.....
and painting it purple!!!
 
 
 ,
 
 
 
 
 
 
 

21 October 2012

Day 20/21
 
Well guys did ye miss me......
 
I was at a wedding yesterday,  and an Irish wedding, is an all day event.
 
The wedding was at 1pm,  and we got home at 3am.
With no nap....
 
Yes ye heard me.... no sleepy time for Marion.
 
That my friends is unheard of,  for me anyway.
 
Usually at a wedding I would have at least a half an hour after the meal, but probably 2 naps in the day, either in the hotel room, or car.
 
Unbelievable.....
 
After I rang the hotel before the wedding, I was reassured that  they "got" the gluten free thing....
 
I was wrong!!!
 
When the server was going around asking peoples choice for the main course,
 I told the server I had called ahead, and specified gluten free diet, and ordered the beef.....
 
It also stated on the menu that a gluten free menu was available! (ask server).........
 
Done!!!!
 
So starters came out.
 vola-vaunts and potato skins...
 
I got a melon...
ahhhhhhhh
 
Then out with the soup
 (which was ceoliac friendly)
Down it came to the table, with croutons floating about in it......
 
So I pointed this out to the server quietly,
 and she took it away and brought out another one without the floaters.....
 
Phew.....
 catastrophe averted.
 
Now on to the main course....
 
So out comes the plates....
Down with my plate of gluten free beef...
with gluten free gravy on the side..
Yes!!!!!!
 
Ah no!!!!
  There was a Yorkshire freaking pudding, and a potato croquette
WTF...
 
So I call the waitress over AGAIN...
I swear I never complain or moan, when I,m out to eat...
 But this was getting blooming ridicules...
So she brings me another one......
 
The mash potatoes, and veg is left on the table for everyone....
But the veg was cubed carrots and turnip on one side of the bowl and cauliflower and broccoli, with a cheese sauce!!!
 
Hmmmm???
 whats cheese sauce made from???
 
So I call the waitress again, cringing...
I quietly ask for veg without sauce on it...
 
So one more course...
While everyone enjoyed a selection of ice cream...
In a nest!!!!!
 
I had fruit salad....
Yummy!!!
 
Boy that was hard work....
I felt like an awkward old nag...
I hated having to scrutinise every last mouthful.
 
I will email the hotel tomorrow and give them feedback on their version of gluten free food!!!
 
As for the rest of the day, it was great....
I did have a little cataplexy attack, knee jerk, eye roll!! 
 But boy was I funny......
 I would honestly say that before going off my meds, I would have had a total collapse in that situation...
I danced, had the craic, drank brandy,and had a ball....
 One of the best parts is that I was grand today...
Pre gluten free I would have been,  (falley down) as I called it, today...
Instead I was out farming this morning,
 then met up with friends at a football match, (which we lost)
Then home and done a few jobs around the house...
There is no way on earth i would have been able to do all this in two consecutive days....
No way, no how.... never....
 
So I'm three weeks done...
and can honestly say its the best decision i ever made in my life......
Life..... that's what I have now,
instead of an existence...
 
I,m going to cut the blog down to twice a week now, unless there is a revelation you need to know about..
 
later guys....
thanks for all your incouragment....