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
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
