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!!

 

 

 

 

 

Day eleven....

Can ye smell it???

Baked with my very own hands, with a little help from little Betty my six year old prodidgy....lol

The gluten free flour that i used, the consistancy is weird, a little like corn flour..

ITs Odlums Tritamyl self raising flour.

12oz/350g flour

12oz/350ml milk

15ml/1tblspoon of veg oil

 mix together

bung in a lightly greased loaf tin

40/45 minutes @200oc/400of

real butter all over crust and wrap in a damp tea towel...

makes crust extra tasty...

Anyway today started great, doing little jobs all day.

I'm starting to get on top of jobs I have left on the "long finger..."

I'm clearing through them, one by one...

I didn't have a nap today till nearly five o clock,

so I was feeling a little Falley down... as in I felt if I did let myself go, I would have had Cataplexy attacks!!!

That lasted from about 3oclock till I took a nap!!

Apart from that I was grand all day, a little irritable by this evening though....

Lets see what tomorrow brings....

Its really hard to judge my days off as they follow now real form?

I know what I'm having for lunch tomorrow though...

Now what will I have with it?? 

Beth has ordered it for her lunch too...

Later guys.... 

 

Ten bloody days!!

Can you believe it?

 

Well I can't!  I had a sleep attack today at 1pm, I usually take my nap at 1;30pm, so that was weird!

I literally just closed my eyes for about 2 minutes and I was grand. 

Apart from that I was great all day. 

So no provigal and only 20mg of anafrinal..".Not bad eh"

Oh and did I tell ye I've lost 5lb since i started...

Yea for me!!

I had a GF muesli for breakfast,  a peanut butter sandwich for lunch and the most fab BBQ marinated salmon and rice for dinner! then just fruit and rice cakes for snacks..

I swear the food is great, I've never ate so much, without blowing up!!

I  can't help but wonder is it really the GF that is making me feel better?

I hope to get rid of another anafrinal next week?

Can I really do without them? 

I have to say I am nervous, and I,m not even sure what I'm nervous about?

I don't know life without narcolepsy, cataplexy, sleep paralyses, hallucinations, tiredness, irritability, the buzz from the stimulants, the numbness from the antidepressants.....

Holy crap... what am I at???

 

Later guys!!