06 November 2013

Dear Diagnosis

Dear diagnosis.





Dear Marion


So its true.... you have narcolepsy. £150 to a patronising neurologist in Galway to tell you what you read in a magazine.... and now my dear your life will never be the same.....
I'd love to tell you that everything is going to be alright, but by god you have a tough road ahead.
I know your scared and alone but you are strong and you will get through this.


Well lets look at the upside... its not MS like your GP though.....

But there is so many questions that no one can/will answer for you, but I will answer them for you now.

Can I drive?
Can I work?
How bad does it get?
Will the medication work?


  You hold on to the hope that in 3 months, at your  next appointment your meds will have sorted your day time nap attacks, and that weird thing that happens when your messing around will have stopped.  Well I'm afraid its not that simple.
 The medication that the DR prescribed is not a quick fix, at first it just leaves you buzzed. Your walking up the street like someone on speed. your jaw is clenching, your tongue is numb, you find yourself physically going "la la la la la la", your hoping it won't always be like this?

 
It won't pet!
 But I'm afraid it will get worse before it gets better.....
So your trying to continue as normal, laugh it off... "It'll be grand..."
 
But all those weird things that were happening to you, are all connected to narcolepsy, and they're getting worse.

That mental nightmare you have, with that huge rat sitting on your pillow, face to face with you, baring its teeth at you.  It's not like a nightmare cause its so real you feel its  hot breath on your face, and the worst part is.... you can't wake up out of it, in fact you can't do anything. then you realize you are awake.... so that rat is real!! but your paralyzed.... really paralyzed, you really can't move.... You cant even blink your eyes to try to frighten the rat away...... and still its hot breath on your face........

Oh Marion.... I do know the terror you feel.
 I know how your trying to move any part of your body, your voice even... but even though you are screaming hysterically no sound will come out..... Then in what seems like an eternity, your voice works, the rat is gone, you can move everything... but your screaming, tears are streaming down your face.....

Even though its not really real, it is to become a regular reality for you.   It will happen time and time again and each time it happens  it will terrorize you as much as the first time....
It happens when your falling asleep or waking up, to the point you become so afraid of falling asleep..

I know how torturous it is when your body is screaming for you to just shut your eyes and sleep but your mind is terrified to let you....

It is something you will live through daily, and will become normality for you.

That weird thing that happens when your messing about is going to get worse also.
 As of today it feels like a knee jerk kind of thing, you might fall, but you always manage to hold on....
Well within a couple of weeks, it will get progressively worse until you are not able to stop yourself falling on the ground.

How humiliated you felt  the first time you totally collapsed!
It was in the kitchen of your parents house, you and your dad were slagging each other off,
then bang ....
 but thank god you landed on a chair....
 but you couldn't hold on....
 you couldn't control your muscles...
you couldn't stop yourself from landing face down on the cold tiles.....

The laughter that had been in the room stops dead and turns into an awkward panic... 
Mam comes running over to you, but dad bluntly tells her to leave you..... "don't touch her"

AS your lying on the floor, you hear every thing. You can feel everyone's eyes on you, your 11 year old niece is there standing beside you....
 Your jaw is clenching uncontrollably like in spasm, it feels like a fit.....
 the laughter is gone....
 your trying to make your muscles work again....

How pathetic you must look on the floor...... 
 
The pity everyone is feeling for you is tangible, and is prolonging the cataplexy attack your having...

Finally after what feels like an eternity, your brain and your muscles reconnect, and you pick yourself off the ground, and without making eye contact with anyone you run outside,
 light up a cigarette, and cry.......

The next thing you realize, is Denise standing beside you....
She puts her arms around you, while your sobbing your eyes out.
You tell her your sorry she had to see that, and god love her, but she says the right thing at the right time....
 
"It wasn't that bad Mar" 

Let me tell you Marion, you will have many more cataplexy attacks, thousands in fact....
But that hug, and those words from an eleven year old girl will always be a strangely comforting memory

So your symptoms are getting worse instead of getting better....
Your late for work everyday, because you spend most of each night either trying to shake yourself out of the sleep paralysis episodes, or afraid to let yourself sleep.
 You love your job, and craic you have with your workmates and customers makes it more like something social than work.

Your a good barber, and even though your time keeping leaves a lot to be desired, you pull your weight,  produce good haircuts,  get on with everyone, and above all, make money for the boss...

Its going to get harder and harder though....
These bloody sleep attacks that sneak up on you are crippling you....

Its only a matter of time before the cans of red bull and medication won't keep you from falling asleep while cutting someone's hair....
Everything will go black in front of your eyes and you collapse and you will realize that for the previous minute or so you had slipped into sleep while continuing to cut hair.....

This along with the cataplexy which will happen more frequently will be the catalyst for your employer making it impossoble for you to keep the job you love....
Don't take it personal Marion, he just doesn't want the hassle...
 and always remember " what goes around comes around" 
So you've worked there two years, covered his ass while he goes avoiding work everyday.

Fair play to you, if you come in a bit late, you work through your lunch hour, and or stay late...
If you have to have a quick nap in between haircuts, so you don't fall asleep while with a customer, you don't take your other breaks.....
 
But it turns out that that is not good enough....
The snide comments start, he will start making fun of you, and encouraging others to laugh at you too.....
He tries to make you feel worthless, and good on you girl, you don't stand for it.

 After that  cataplexy attack that left you feeling so humilieated you swore you wouldn't apologise again for something you had no control of....

So you told your boss as much ;-).
And to stick his job where the sun don't shine...

So the medication isn't working, your nodding off all over the place.
 Your falling 30 odd times a day.
Your not working.
Your not driving.
Now add depression to the mix.
"Oh"  and your broke.

Its going to be a dark time for you Mar.

You hide yourself in your flat.

You hide from the outside world.

When you do have to meet people you surpress your emotions.
You nod your head and have perfected a fake laugh but you zone out of conversations, and life.

You only leave your flat when you have to, but Marcy your dog needs walking a couple of times a day, and it gets to the point that you are thinking of ways to kill yourself while making it look like an accident.
 This will go on for months but again you will beat this. 


This is your lowest point.  Its a horrible place but you will leave it behind.


You will meet a woman who doesn't just do her job, she sees the pain your in, and takes the time to lookup an article she had read about a woman with narcolepsy and contacted her.

The day that woman with narcolepsy phones you is the first time you realize that you can have narcolepsy and still have hopes and dreams... and a life.....

From that moment Marion you are back on track.

It is 11 years on from those dark days now.

Now I'll answer your questions.

You get back driving in about a year and a half.

You have got off most of your medication and just take some at night.

You have learned to control your EDS with naps and diet.

Your cataplexy happens rarely now.

The medication you take now stops the sleep paralysis and vivid dreams.

You have been in your current job for ten years now, its part time but its great.

Your married to a big handsome loving man who adores you.

You and him built a house together and had a beautiful healthy daughter who is seven years old now.
 Life is good now.....

I know you'll love it!!!!

Oh and remember that horrible boss you had?
Well he has managed to bully and take advantage of everyone is his path.
AS of this week the last the eight barbers he had,  has left along with most of his customers.
And two of the best ones came to work in the shop you work in.....
You actually got them the job!!!

Karma!!!





love
me! xxx










23 October 2013

My GF year

Sorry its been a while
 
But I have been a little busy living my life...
So its been a little over a year since I cut gluten out of my diet...
OMG what a year its been.
 
 I haven't talked to ye since b4 the summer, oh and what a summer it was....
I cant even remember all I got up to, suffice to say, it was a whole lot more than any other summer over the last 11 years.
 
There was weddings, hiking trips, days at the beach, mountain climing,  days fishing, farming, even days at the bog....
 
What can I say, it might not all be good.... but you don't know how
 
 
Now don't get me wrong... I still have narcolepsy with cataplexy.
But the difference between me now, and me last year is unreal.
 
I work three days a week, and still have a nap every lunch time for about 20 minutes.
I usually bring my lunch with me, a salad of some sort or other, for a couple of reasons:
 
No 1: Its cheaper ;-)
No 2: I like my salads better :-))
& No 3:  I can be sure its deffo GF :-)))
Although there is no shortage of places to eat, a lot of places even have GF options written up on the menu's otherwise any restaurant is more than happy to accomidate me.
 
I find that not having carbs, especially during the day helps to keep me more alert, and you know if I really want carbs I'll have them in the evening when I don't mind falling asleep.
I've toyed with varyations of GF and have gotten great tips from different GF/LC diets, be it phase one of the atkins diet, Paleo/ primal diet, elana's pantry and so find plenty of alternatives, and ways to add variety to my diet, so I don't get bored!  
 
And I've lost over two stone since last year also.
The first stone (14lbs) just came off when I went GF in the first place, but the second one needed some convincing to come off ;-).
So I really stuck to low carb, high fat pretty much 90% of the time.
But GF 100% of the time....
 
So the benefits of going GF/LC have been.....
 
Way reduced EDS.
Brain Fog gone.
Memory way better.
Got off 10 pills a day.
Lost weight.
Kept it off.
Way more energy.
Sleeping better.
No more sore joints.
No craving carbs.
Digestion much better.
Happier.
Healthier.
&
Loving life
 
xxxxxxx
 
 
 
 
 
 
 

 

 

 


08 April 2013

complacency is not my friend!

OVER SIX MONTHS AND COUNTING


 
Its funny...
 I started to get a little cocky after my last post.
 
Oh ya this gluten free craic is easy...
And yes it is for the most part,
 but complacency is not a friend when you are on a mission....
 
Although I try and stay low carb as well as GF, I find the LC the hardest part...
Anyway to make a long story short, I goofed up...
 
I question the GF thing constantly...
I seem to forget how bad my symptoms were!!
 
I know I do way way way better GF/LC.
I sometimes choose to forget the LC part...
Hey I'm Irish, we love our spuds!!!!
And yes my EDS plays up when I don't keep my carbs low.....
 I can live with that now and then!!
 
But the real goof up was GLUTEN.
 
Movie night with my kid.
I picked up some chocolates that I thought were GF.
 
I didn't check the wrapper, I had had (similar) ones before and they were fine!
I thought nothing more of it until I went to bed...
 
OMG
 
What a crap night.
 
I took my usual dose of xyrem but was awake 20 minutes later, my mind was all over the place.
Nagging pains in my ankles, that I had not had in months!
Sleep paralysis, hallucinations, clock ticking so slowly......
Finally its time for my second dose....
Less than an hour later I was awake again...
It was a night from hell.
It was full blown Narcolepsy..
 
I checked the wrapper the next morning....
and there listed in plain sight was "wheat flour"
Doh.......
 
IT was how my nights used to be.
Oh my lord.
 I had four nights of that, and by God it has confirmed to me, yet again, how much better my life is since going GF.
How did I survive all those years with nights like that?
 
My days as a result  of the gluten goof up,
 were back to the not so good old days, of EDS, constant fatigue, micro sleeps and auto behaviour.
 
The pains in my ankles was something I hadn't noticed getting better, it was just something I had had for years.
 I'd been to a ruematoligist and everything about it, and we had put it down to me having sprained both ankles and it was just something I would have to live with!!!
Anyway I'm back on track, and enjoying even more the benefits of GF.
I seen my sleep doctor during the week, and she couldn't have been more positive.
We discussed the whole thing, even my gluten slip up and now I'm going to try and cut out my xyrem bit by bit....
I do know to get the full benefits I will have to cop on, and sort my carb intake out.
But it will be so worth it, if at the end of the day I can live my life...
 completely without meds!
 
But even just being GF has given me so much.
 
Later folks!!

 
 
 
 
 
 
 
 


26 March 2013

Living again....

nearly six months off gluten
 
 
Wow folks, I cannot believe how much my life has changed.  Sorry I haven't been on for a while, but in my defence, I have been busy LIVING MY LIFE...
 
Its hard to believe the difference in my life something as simple as giving up gluten has made.
 
People ask me all the time, "is it not really hard"?.
 
The reality is, living with Narcolepsy is hard!
Taking between 600 and 800mg of Provigal everyday for the last ten years was hard.
Taking 40 to 60mg of antidepressants everyday is hard! 
  Being buzzed by the stimulants, and still never fully awake is hard.
 
Going through life, the ups, the downs, and everything in between, and being numbed, robbed of the emotional highs and lows by the antidepressants is hard.
 
My god... I,m nearly in tears thinking of all I've lost in the now nearly 11 years since I started medication.
Now don,t get me wrong, I was very glad to have it. I made the most of  the life  I had then, never questioning, or believing things would, or could be better. 
 I felt lucky that I was "controlled".
 
Maybe I needed that time to appreciate what I have now...
 
And what do I have now.....
I wake up in the morning sometimes even before my alarm goes off.
I run around like anyone else, and get my daughter to school, and myself to work.
I'm awake for my twenty mile drive to work, and manage to get there pretty much on time.
 
My boss is gobsmacked!!
 
I do my days work, and don't tend to drop off cutting a head!!!
Yes I still have a nap at lunchtime in my car, which sets me up for an uneventful afternoon.
Then I've the drive home which I now seem to manage all in one go...
On getting home, I cook dinner, play with Beth, chat to hubby, walk the dogs, do some housework, then sit down and watch some telly.
There is the odd day that I struggle more...
But now those days are the exception rather than the rule!!
 
Pretty normal eh?
Yip... pretty normal is great...
 
So let me tell ye, its easy staying off gluten...
And I've even managed to stay low carb too...
For the first time in my adult like i feel, for the most part, in control of food.....
 
After a lifetime of food controlling me!!!
 
and thanks everyone for your encouragement
 
later folks! 
 
 
 
 


14 February 2013

Fact or fiction?

Valintines Day
 
well folks I'm still gluten free and doing well.
 
Today I was in town, and met a girl I used to work with, she was very much a part of my everyday life when my EDS was really begining to become a problem, and Cataplexy was making an appearence......
 
Now my memory of things, and her memory of things seem to be way off......
 
Or sometimes people exagerate so much, and put legs and arms onto things so often that they actually believe their own stories....
Or i have forgotten such an amount of my own life??
 
So we started to chat, and she mentioned she had been talking to my sister, who had mentioned how well i was doing since going gluten free...
 
Meanwhile another girl that she knew came over, and Donna explained to her friend that I was the one with narcolepsy.... "remember I often told you about her"....
She continued to tell her friend about me, in front of me......
"Remember the day we were crossing the road and you dropped in the middle of main street, and I didn't know what to do, so I went into the pub and got the barman and another fella to drag you across the road"
 
I said no I didnt remember that???
 
Seriously ....
 
WTF
 
I would nearly bet my house that that never happened....
 but what could I do or say, without looking like a bigger fool than I was feeling at the time??
She told of another few instances that again I have no recollection of???
 
Is this how poeple see us PWN, or just me???
This is not the first time stories people have of me, and my memories do not tally up....
But I think people would prefer to juice up the stories to make themselves seem more interesting!!
People are constantly doing this...
So what i want to know is what do i do, if anything, about it???
Or am i better to leave well enough alone???
 
rant over..:-)
chat soon
 
 
 
 


18 January 2013

how it all began....

110 days gluten free


How it all begain


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),

 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.....