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.....

 

 

 

 

 



 

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!!!

 

 

 ,

 

 

 

 

 

 

 

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....

 

 

 

 

 

 

 

 

 

 

 



19 days on the gluten wagon

 

Well  I've had the best 19 days.

Still feeling blooming mighty.

 

I've a wedding tomorrow, so that will test me.

I rang the hotel to order a gluten free meal, and happily all the hotels soups and sauces are coeliac friendly.....

 

Isn't that nice!!

 

I have to say, as much as this little country of ours sucks sometimes, its a great place to be gluten free.

 

Fair play to the ceoliac sociaty's for promoting gluten free eating, and educating the catering comunity on their needs.

Maybe us people with narcolepsy could take a leaf out of their book?

Today was another good one, as was yesterday.

In fact I've had a mad week so I should be knackered by now.

But I,m grand.

Time now to do some serious preening for tomorrow.

 

 

18 Days

Of living the gluten free way

 

 

Well today I went to see my sleep doctor.

What a lovely lady.

 

I was nervous about telling her  about going off my medication,

 and thought she'd rubbish the fact that I stopped eating gluten and  my symptoms improved!! 

I have to say she was very interested!

Was amazed the difference  it has made.

Couldn't complement me enough,

 on how well I was looking and doing.

Asked me all about how I went about it.

Went through everything.

 

She said she doesn't know why going gluten free is working so well, but its something she will look into.

She told me another patient had gotten great results from a more extreme diet,

and that actually she hadn't seen her in a long time?

 so maybe that's why?

 and she would check in on her to see if she is still doing good.

 

She also said it was something she would certainly recommend to people,

 it was definitely worth a try,

and for me to keep blogging about it.

 

If it gets one more person the results I was getting, it could only be good!

 

I am staying on the xyrem for the moment anyway.

When and if I want to try and go off it,

 cut down gradually, 

 she would leave that for me to decide,

  but that would be brilliant,

 and keep her posted good or bad!

I was up at 6 this morning... that's 6am!!

I swear that's one thing that is getting so good...

Dad rang me after the DR appointment,

he asked "who got ya up this morning"

He was very impressed when I told him i got up all by my very self.....

he said "Ah you must have wet the bed, that's the only way you'd leave it"

 

What ever about narcolepsy, I think being a smart arse definitely runs in the family!!!

 

Its nearly 9.30 pm now so I've a few jobs to do before i go to bed....

 

so I'll sign off now

 

Later!!!  

 

 



My name is Marion Roache an I have Narcolepsy.

I have been gluten free for 17 days.

 Round of applause please..lol

 

Today its ten years since I was diagnosed!!!

OMG

 

I shared this with my friends back in September.

It came about after a conversation with a customer!!

 

 

 

 

 

Someone asked a question lately, I don't know who, or when!!! Lol...

 My brain seems to be constantly foggy, narcolepsy is not just about the sleeping!!! Anyway the question was if they found a cure for narcolepsy would you take it!!!
Now a few years ago I would have jumped at it....

 But I really had to think..

 I suppose I have had it for so long now that it has become part of who I am...

 I have

learned to accept my medications, my naps, my limitations...

I have learned so much from having narcolepsy,

 and I have learned to appreciate all the things I still can do,

 and all the things I can get away without doing!!!

 I have to admit I have been known to "use" narcolepsy as an excuse to get out of things I don't want to do..

 So how would I avoid them if I didn't have narcolepsy????

 With my medications and regular naps I can controll it most of the time..

 And even the cataplexy has given me so many funny stories...

 Like holding Bruce Springsteens ass...

 Talk about a dream come true...I would never have gotten that oppertunity without narcolepsy....

 This has becom my normality...

 And I suppose change is always scary...

 So I'd have to think long and hard about a "cure" I don't think I'd be "me" without narcolepsy...

 

I actually wrote that?

 And believed it!!!!

ha....

 

************************************

 

Just the next day  I posted this on my time line.....

 

 

What the hell was I raving about earlier.....
I went to Horkans this evening..

It's a big garden centre and pet store for those of you who don't know it.. Anyway I was getting dog food, and Beth was looking at the rabbits and stuff...

I was going back to the till, with one of the girls that work there,

 and was passing where Beth was..

 So Beth says" hey mam look at these"

  next thing I was flat out on...

the ground....

 

She had been looking at hamsters, and as far as I'm concerned they're rats... Another woman that works there was like

" what's wrong with her",

the girl that was with me says

 "I think she's fooling with her kid"

 Fair play to Beth she told them "my mam has narcoklepsy!!

  I was on the ground for at least 2 minutes..

 

 You'd want to see the looks I got when I got up....

 I honestly think they though I was off my head!!!!

 

 It has been a while since I had a cataplectic attack in front of strangers.

 I'd kinda forgotten how awkward it is, when you have to try and explain to strangers,

 who really are not listening to your words,

 they are just judging you!! 

 

So forget what I was saying earlier..

 

 I want a cure for narcolepsy!!!

 

********************************************************

 

I was looking into the gluten free thing at the time,

so this made my mind up for me!!!!

 

Today was brilliant again.

I actually stood having the "Craic"with my boss this evening.... and I SO should have fallen down!!

I even stopped mid sintence, and waited for a cataplexy attack....

 NOTHING!!!

Not even a knee jerk.....

 

I'm not going to speak to soon but WOW!!!

 

Im seeing my sleep specalist tommorrow so lets see what she has to say about my adventures this last 17 days!!!!!

 

Ill let you know tomorrow how I get on...

 

 

SWEET 16

And been kissed a few times....

oh the memories...lol

 

Jesus lads when I think of all I've been through this last 10 years, and then some...

 

I moved back home after spending six years living it large in Chicago.

Within six months of me coming home my Cataplexy had started.

It started with my legs going weak, when ever I was taking the "piss" out of some one!

Which I did a lot!!!!lol

 

I'd be working in the barber shop, and would tease a kid, oops knees gone again!!

It continued like that for a while.

 

 At home in my home house, was always a hive of activity.

I have eight siblings, all grown up at this stage,

but there was a couple still living at home.

 

Our house was always where everyone gathered,

all our family, neighbours, sisters boyfriends, their brothers and sisters...

I,m telling ye..... A MAD HOUSE..

Mam was a baker, and one hell of a cook so she was always feeding the "strays" lol

There was always some sort of "Piss pulling" and I was usually in the thick of it...

So it was inevitable that that's where I was to have the first of my ten years of total collapses!!

 

I will never forget it as long as I live.

We obviously new something was up.

 I new it was narcolepsy!

 

My friend had given me an article where all my symptoms were there in front of me...

It was so surreal reading a story,

someone elses story, but it could have been me that wrote it, that's if I could have put it into words...

 

I remember thinking when I read the article," well I,m not as bad as her", so when the total collapses started to happen, I knew..... I was as bad as her...

I was devastated.....

 

 Me and dad were slagging each other off about an umbrella!!!

When I collapsed on a kitchen chair at first,

 I tried with everything I had to stop it there,

but Cataplexy had other ideas for me...

I tried to stay on that chair, but my body couldn't hold me..

I tumbled off the chair, face down on the ground.

my jaw was clenching,

 my neck drawn back,

 I couldn't stop it,

 I tried to talk,

 I couldn't,

My eyes were rolling,

It felt like a "fit"

 

Mam came over to me panicked....

Dad shouts at her to leave me....

I'm still on the ground trying to make it stop.

 

Finally it does stop....

I get up off the ground.

embarrassed,

Humiliated,

sick to my stomach.

 

The look of shock and pity on everyones face was worse than anything.....

 

Nobody spoke....

 

 I went out the kitchen door, lit a fag, and cried my eyes out.....

 

After a few minutes my eleven year old niece came out to me.... and gave me a great big hug....

I said "did it look awful", she said " it wasn't that bad"

 

Ironically tomorrow is the tenth anniversary of my diagnosis......

 

 Ten years later I cannot believe Gluten Free has changed my life.

 So much so, I'm excited about my future....

Yes I still have narcolepsy...

 

But right now I don't feel like I do.....

 

sorry guys... gotta go....

chat soon....

 

 

 

 

 

 

 



Well hello again

 

Day 15

 

Done and dusted..

 

Talk about running around like a blue arsed fly...

I didn,t even have time for a nap today.

I had appointments all over the place, and for once the only thing standing in my way was time.

No nodding off behind the wheel,

 and having to pull in all over the place...

And yes I got it all done.....

 

I'd bacon and poached eggs for breakfast.

A bowl of GF soup in a coffee shop in westport,

with a slice of  GF bluberry cheese cake and a coffee after... mmmmmmeee

 

And now just had a kick ass steak, mushrooms, and veg for dinner.....

It was only after that, that the  afternoon sleep I missed started to creep in!!!!

I'll try and hold off yet and might just hit the hay early.

I' m still feeling great though...

 

So I'll  chat to ye later.

 

A day of  fun on zip wires, high in the trees.

I had a fair few cataplexy attacks,

 but sure i was well strapped in.... oops lol

this is some of my crew.

sisters, their other halfs, my other half,

neices, nephews,

and beth

I'm going to have a lot more days like this....

 

 

 

 

 

 

 



Day 14

That would be two weeks

 

 

Hubby was giving out, "who hoovers on a Sunday"?

Whoever has a dirty floor...daa...lol

We've never had to argue about such things, as Sunday was usually spent having a nap, in between doing stuff with Beth...

Well I meant to drop another anafrinal tomorrow, but I done it today instead, just cause Mike was off, and I was nervous about driving, and going off meds...

I guess i don't trust the  gluten free thing still?

What can I say...I'm a doubting Thomas...

Anyway i was grand all day again.

I didn't even have a nap today!

 

Went out home to my dads, and told him about going off my meds and stuff, he was delighted, and so interested...

 God I love my Dad...

He's so open minded for an old fart...

 

I told the rest of my family about it too, and they were so excited, genuinely ecstatic for me...and the possibilities that are opening up for me.

 

Food wise I,m finding it so easy.

Its funny I said this morning, "hmm what will I have for breakfast?" Beth comes straight out with "am egg whites or bird food"?

The little shit!!!lol

 

As a treat we brought Beth to McDonalds, I hadn't checked it out before hand, but what a lovely lad served me...

He couldn't have been more helpful.

I had fries,and a strawberry shake...yummy!,

The fries are cooked on their own, in their own oil and fryer, separate from the other fryers!!

He also told me that people often bring their own gluten free baps and they prepare the burgers in a safe area for people.....

Another great day at the office!!

See you on the flip side guys!!

 

 

 

 

 

  

Day Thirteen...

unlucky for some...

 

Well todays mission was to go off the "fags"

Whatever it is about going off the cigarettes, it always makes my narcolepsy way worse...

Today was no exception, so i didn't quite go off them, but I only had four today...

 

Although I might leave it till next week as I have a wedding on Saturday so that could be my final hurrah....

 

I will try and drop another anafrinil this week.

So one job at a time I think 

 

I have never stuck to a "diet" for this long... ever.

It really makes the differents when your doing something for the right reason...

I'm not trying to be thin! fit into a dress! look hot!

 I WANT TO BE BETTER!!!

 

AND I AM....

 

Later Dudes....



Day 12 already

 

Well day 12 started grand, except first customer was a bollocks!!

Pardon my french like.... but there is no other word for it.. He's one of these, that has a superior opinion about everything and anything, and is always trying to get a rise out of me...

Of course the shop was full when I got there, so no time to put any war paint on, and lord knows I need the slap on... talk about dark circles, of course due to narcolepsy but also hereditary, lord of mercy on my mam, she didn't have bags under her eyes, she had suitcases!!!!!!

And guess what she left me!!!! Good girl mammy!!lol

Anyway back to the "bollocks" in the barber shop...

 

"OH didn't ya do well to make it in?"

 

"I don't know if I should trust ya?"

 

"You obviously had a late one last night!"

 

 So I nailed him... with a sweet angelic smile on my face....

 

"Ah no it was no problem coming in, sure  I'm delighted to come to work"

 

"Don't trust me? Your right... what do the words ..silk purse and sows ear mean to you?"

 

"What do you mean late one?"

 to which he said,

 "on no you just look tired, I presumed you were out?"

 "No I wasn't out, I actually have a neurological disorder called Narcolepsy, which interferes with the sleep wake mechanism, it causes me to have disturbed night time sleep, I get sleep paralyses up to five times a night, Really vivid hallucinations, during the day I have uncontrollable sleep attacks, and I tend to collapse, without loosing consienceness,

when I have laugh, get upset, am nervous, frightened or stressed!!!

 

Lets just day it fairly shut him up...he he he....

 

I was actually feeling a little cataplexy coming on around 11 0clock, but I held it together, and I was grand after I took my second Anafrinal at 12 o'clock.

Apart from that I was flying all day.

The bread was fabulous straight out of the oven, but not great for lunch..I used it for garlic bread later and it was fabulous!!

I'm going off the cigarettes again tomorrow so that will be harder than any gluten free diet so keep your fingers crossed for that

 

Ill sign off now.....

chow!!