complacency is not my friend!

OVER SIX MONTHS AND COUNTING

 

Its funny...

 I started to get a little cocky after my last post.

 

Oh ya this gluten free craic is easy...

And yes it is for the most part,

 but complacency is not a friend when you are on a mission....

 

Although I try and stay low carb as well as GF, I find the LC the hardest part...

Anyway to make a long story short, I goofed up...

 

I question the GF thing constantly...

I seem to forget how bad my symptoms were!!

 

I know I do way way way better GF/LC.

I sometimes choose to forget the LC part...

Hey I'm Irish, we love our spuds!!!!

And yes my EDS plays up when I don't keep my carbs low.....

 I can live with that now and then!!

 

But the real goof up was GLUTEN.

 

Movie night with my kid.

I picked up some chocolates that I thought were GF.

 

I didn't check the wrapper, I had had (similar) ones before and they were fine!

I thought nothing more of it until I went to bed...

 

OMG

 

What a crap night.

 

I took my usual dose of xyrem but was awake 20 minutes later, my mind was all over the place.

Nagging pains in my ankles, that I had not had in months!

Sleep paralysis, hallucinations, clock ticking so slowly......

Finally its time for my second dose....

Less than an hour later I was awake again...

It was a night from hell.

It was full blown Narcolepsy..

 

I checked the wrapper the next morning....

and there listed in plain sight was "wheat flour"

Doh.......

 

IT was how my nights used to be.

Oh my lord.

 I had four nights of that, and by God it has confirmed to me, yet again, how much better my life is since going GF.

How did I survive all those years with nights like that?

 

My days as a result  of the gluten goof up,

 were back to the not so good old days, of EDS, constant fatigue, micro sleeps and auto behaviour.

 

The pains in my ankles was something I hadn't noticed getting better, it was just something I had had for years.

 I'd been to a ruematoligist and everything about it, and we had put it down to me having sprained both ankles and it was just something I would have to live with!!!

Anyway I'm back on track, and enjoying even more the benefits of GF.

I seen my sleep doctor during the week, and she couldn't have been more positive.

We discussed the whole thing, even my gluten slip up and now I'm going to try and cut out my xyrem bit by bit....

I do know to get the full benefits I will have to cop on, and sort my carb intake out.

But it will be so worth it, if at the end of the day I can live my life...

 completely without meds!

 

But even just being GF has given me so much.

 

Later folks!!

 

 

 

 

 

 

 

 



Living again....

nearly six months off gluten

 

 

Wow folks, I cannot believe how much my life has changed.  Sorry I haven't been on for a while, but in my defence, I have been busy LIVING MY LIFE...

 

Its hard to believe the difference in my life something as simple as giving up gluten has made.

 

People ask me all the time, "is it not really hard"?.

 

The reality is, living with Narcolepsy is hard!

Taking between 600 and 800mg of Provigal everyday for the last ten years was hard.

Taking 40 to 60mg of antidepressants everyday is hard! 

  Being buzzed by the stimulants, and still never fully awake is hard.

 

Going through life, the ups, the downs, and everything in between, and being numbed, robbed of the emotional highs and lows by the antidepressants is hard.

 

My god... I,m nearly in tears thinking of all I've lost in the now nearly 11 years since I started medication.

Now don,t get me wrong, I was very glad to have it. I made the most of  the life  I had then, never questioning, or believing things would, or could be better. 

 I felt lucky that I was "controlled".

 

Maybe I needed that time to appreciate what I have now...

 

And what do I have now.....

I wake up in the morning sometimes even before my alarm goes off.

I run around like anyone else, and get my daughter to school, and myself to work.

I'm awake for my twenty mile drive to work, and manage to get there pretty much on time.

 

My boss is gobsmacked!!

 

I do my days work, and don't tend to drop off cutting a head!!!

Yes I still have a nap at lunchtime in my car, which sets me up for an uneventful afternoon.

Then I've the drive home which I now seem to manage all in one go...

On getting home, I cook dinner, play with Beth, chat to hubby, walk the dogs, do some housework, then sit down and watch some telly.

There is the odd day that I struggle more...

But now those days are the exception rather than the rule!!

 

Pretty normal eh?

Yip... pretty normal is great...

 

So let me tell ye, its easy staying off gluten...

And I've even managed to stay low carb too...

For the first time in my adult like i feel, for the most part, in control of food.....

 

After a lifetime of food controlling me!!!

 

and thanks everyone for your encouragement

 

later folks! 

 

 

 

 



http://secure.smilebox.com/ecom/openTheBox?sendevent=4d7a55334f446b774d54513d0d0a&blogview=true&campaign=blog_playback_link

Fact or fiction?

Valintines Day

 

well folks I'm still gluten free and doing well.

 

Today I was in town, and met a girl I used to work with, she was very much a part of my everyday life when my EDS was really begining to become a problem, and Cataplexy was making an appearence......

 

Now my memory of things, and her memory of things seem to be way off......

 

Or sometimes people exagerate so much, and put legs and arms onto things so often that they actually believe their own stories....

Or i have forgotten such an amount of my own life??

 

So we started to chat, and she mentioned she had been talking to my sister, who had mentioned how well i was doing since going gluten free...

 

Meanwhile another girl that she knew came over, and Donna explained to her friend that I was the one with narcolepsy.... "remember I often told you about her"....

She continued to tell her friend about me, in front of me......

"Remember the day we were crossing the road and you dropped in the middle of main street, and I didn't know what to do, so I went into the pub and got the barman and another fella to drag you across the road"

 

I said no I didnt remember that???

 

Seriously ....

 

WTF

 

I would nearly bet my house that that never happened....

 but what could I do or say, without looking like a bigger fool than I was feeling at the time??

She told of another few instances that again I have no recollection of???

 

Is this how poeple see us PWN, or just me???

This is not the first time stories people have of me, and my memories do not tally up....

But I think people would prefer to juice up the stories to make themselves seem more interesting!!

People are constantly doing this...

So what i want to know is what do i do, if anything, about it???

Or am i better to leave well enough alone???

 

rant over..:-)

chat soon

 

 

 

 



how it all began....

110 days gluten free

How it all begain

Narcolepsy......What a strange thing...

People think of narcolepsy as the character in the movie Rat Race, or Deuce Digalow male gigolo, or some equally funny phenomenon......

"Oh ya I seen that on some movie or other"......
hilarious isn't it??????

Yes it is funny at times.

If you have narcolepsy, you really do have to learn to laugh at yourself.....

For me narcolepsy started with EDS (excessive daytime sleepiness),

 I was living in Chicago and burning the candle on both ends!!! to say the very least.

 I was working two jobs, and had the social life of at least two people too.....

So when I'd be nodding off behind the wheel,

I would have done the old, winding down the window, turning up the radio, constantly drinking red bull and or coffee and thinking

"I must go to bed early tonight"

I can vividly remember driving my little VW cabriolet that I called "Seamus", around that beautiful city and having to pull in and shut my eyes for literally two minutes.

Not the safest thing in the world to be doing in any neighbourhood, much less a lot of the neighbourhoods I'd have to drive to, and through showing apartments to clients.

They say you look back with 20/20 vision.

Obviously the "they" that say that do not have narcolepsy!!

It was only by talking to other people with narcolepsy,

that I've begun to realise how much this condition has jumbled my life and my memories.

Memories that I should have, I don't!!!

and yet, I have memories that never actually happened.

Thanks to the old hypnagogic hallucinateations.

So lets start there next time.....

 

 

 

 

 



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......




 




  

 

 

 

 

 

 

 

 



Its christmas eve folks

 

 

I said I'd start on hipnagogic hallucinations didn't I?
 

Well I'm not, so there!!!!!

 

I've gotten a little side tracked....... so this is what your getting:-)

.

The first time I heard the word Narcolepsy was in a  great film called "The Match Maker".

 

The scene depicted a load of people around a table, the old guy was introducing them, and when he came to one of the people, he said, "don't mind our Frankie if he drops off, its just the ould narcolepsy" as he said it Frankie passes out on the table.....

I actually started using that line, for all my mess ups.... I would be late for work, and my excuse would be, " oh its the ould narcolepsy"

I'd fall asleep in a pub or somewhere I shouldn't and I'd say...." it must be the old narcolepsy"

 

Now keep in mind this was long before I knew there was anything wrong with me, that a good nights sleep, and/or taking it easy on the socialisisng wouldn't sort out.....

I had no idea, nor did I give a dam what narcolepsy was..... 

 It was just falling asleep in ridiculous places, wasn't it???

 

It was at least three years later before I would really know what narcolepsy actually was.....

Talk about mocking is catching!!!!

some of you will have read this next piece before, so sorry about the repeat....

But I do really believe we can put the truth about narcolepsy out there.....

Its not just something to be laughed at, although it does have its moments :-)

  

 

 

 

 Time and time again I'm hearing PWN say that no one understands ""us"...

 And while I do agree,

 I for one am constantly telling people about it.... And yes I get the " oh one time in band camp I fell asleep" lol... But I also get some genuinely interested people, who ask questions, and listen, and are fascinated by the condition... 

None of them ever realized it was such a complex condition either.. 

Ya, chances are they forget all about it as soon as they are out the door. I think we all can positively up people's knowledge about the day to day living with narcolepsy.
For those who don't know me, I work in a barber shop so I do gave a captive audience..:-)

But when people see that you do work, drive, and I manage to cut their hair without nodding off it dispels there preconceived notions of narcolepsy... So more people will know more about it, if and when they meet someone else with it.... They may be an employer ??? And so would not be afraid to hire someone with narcolepsy.... They could be a teacher??? And so see that a student might need more accommodations...

Because now they understand that it's not just about falling asleep !!!!!! I personally would be much more embarrassed if people thought I was just dopey, forgetful, or drunk falling down, or on drugs ??? Than someone who is living with narcolepsy....
We cannot be embarrassed or ashamed of what we have....
To employers, teachers, and or anyone who will listen.... How can they help us if they don't know what's wrong with us..
Tell people about it.... Don't apologise for having it.... We never asked for it.... Tell them firmly what can help.... Like I told my boss, when i applied for my job..... " ya I'll cut hair!!!  but every now and then I'll have to go in the back and put my head down for 5/10 minutes... Without being disturbed...."  

If they tell me I look tired, I tell them about why I'm tired...
 I tell people "if I fall down laughing, help me down, don't try and keep me up.... And make sure I'm not lying on anything that can hurt me...." 

I tell them how I'm fully conscious when I'm having a cataplexy attack. 

So they are not scared when it happens

 "If I go into automatic behaviour snap me out of it"

Make a loud noise, of "poke" me.....
People don't see it as a big deal if they know what to do......
We have narcolepsy... But we also have so much more to offer......