Its been 3 months and 10 days since I stopped eating with  gluten...

 

 

Wow guys what a journey....

 

But let me tell ye... it hasn't been all plain sailing...

The thing is.... when your taking medication, for anything I suppose, you know how they are working for you? 
 You are in control of taking them, aren't you? 
 

Well by going gluten free, I got to go off nearly all my day time medication, all but one anafrinal tablet, its an anti depressant, to help keep my cataplexy under control.... 
 I had been on 4 of them a day, and knew if I was under pressure, like if I was going somewhere out of the ordinary, like a wedding or a funeral, I could take an extra one to get me over the occasion......
 

So while having to rely on gluten free food has so many positives, it also has negatives......
 The biggest of which for me, is trusting gluten free is gluten free...

Now  reading food labels, is fine and grand at home,  sometimes you don't, or can't eat at home...

Under these circumstances you have to be able to trust that when someone tells you that yes, the soup is gluten free, that it is completely gluten free, which includes cross contamination...

which has the same affect as if you put that slice of wholemeal bread in your mouth yourself....
 

My story this week involves both being inadvertently glutened, and the fact i forgot to take the one daily pill I take....
 

This story goes back to last Friday, the 4th of January...

Somewhere along the way I got glutened,
 looking back I think it was in the cafe I often have lunch at.

The special of the day was a ham, omelet.
 Brilliant, omelette's are gluten free!

There was a different waitress than usual on that afternoon, and looking back, she couldn't have cared less the fact I specified for  the food to be gluten free!!! 
 I shouldn't have trusted that the dressing on the side salad was gluten free....
By Friday night my narcolepsy symptoms were back with a bang....

It started with me having to  pull over on the way home from work.  

 My sleep that night was all over the place, I woke up at least every hour, even with my two doses of xyrem. I was wide awake for hours at a time.

I had to pull over again on Saturday morning on my

to work....
My EDS was brutal, all day, I had maybe 4 naps including the one I had on the way home from work.
 

Saturday night I had another fretful  nights sleep. 

Sunday I slept till one o clock, then went swimming with hubby and daughter, and slept all the way to the pool.....

 I even had a cataplexy attack in the swimming pool!!!! so not nice.... 

And I kept nodding off while we were waiting for our dinner....
 

If I had left it at that, things would have been  getting grand by Monday...... But I was that cross that when we got home I ate a a bar of chocolate that I knew had gluten in it....
well I figured I already had gluten in my systom, so having another little bit would be grand......

.

Its Wednesday the 9th now, and I am still feel like shit.....

especially my cataplexy

I  had to pull up coming home from work again.
Then got a yummy stir fried chicken dinner ready.
So with hubby gone playing football,
And with the fire lit in the sitting room.
It was time for a nice dinner in front of the soaps...
***good times***

What happened next?
*** Bad times ***
I didn't even get a chance to put down my plate.
Luckily I had managed to finish my grub.
One of the few benefits of having eight siblings is learning to shovel food down your throat at the speed of light,  for fear of  one of them "helping you".
Anyway, out of nowhere, watching Corination Street for god sake, my eyes began to roll, jaw slaking, I completely slumped over, head lolling around the place.
I tried to regain some kind of control over it, but couldn't. 
The fact that the plate was balancing precariously on my lap, was really pissing me off....
Then the dog/ elephant came in and thought "oh I can lick the plate", then to my horror proceeded to lick my face.... it was excruciating.....

Ruby was still licking my face when Beth arrives in to show me her latest magic trick.....
At six and a half... she has seen me falling, sleeping, auto piloting.... but god love her, she ran out of the room.
That upset me so much, but the cataplexy had a  hold of  me and it wasn't letting me go....
She came running back in, and sticks a thermometer in my mouth......
 God love her, it broke my heart...
At this stage The tears were streaming down my face.
 Thankfully the dog had had enough....lol

The whole thing from start to finish lasted at least 25 minutes.... .
It was without exception the worst cataplexy I have ever had. It was almost like a combo of cataplexy and sleep paralysis, except I shouldn't have been having paralysis as i wasn't falling asleep, or waking up....WTF...

When I did finally get out of it, I gave Beth the biggest hug. 
 She told me she thought I was dieing.....
What the f**k do ya say to that???
So I tryed to explain as best I could, that it was just the same as  the other times I fall down, except I was already sitting....  
I told her she had done a super job looking after me..
She asked me will it happen again, all I could say was "I hope not" 
God I was never so glad to see Mike walking through the door......

Today is Thursday and I was off work today.
I took it easy today, stayed at home, and didn't take the tablet again today....
But i think I'm back on track....
Fingers crossed......