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!!!

 

 

 

 

 

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...