nic77e

dealing with narcolepsy, wedding planning, a law degree and some new fitness goals…

Good days and Bad days

I do want this blog to be positive, but I also want it to be a realistic reflection of my experience.  Today was one of the bad days.

I had such high hopes when setting out this morning, as usual I set the bar too high.  It is frustrating to realise that you can no longer do the things you used to do.  Gone are the days when I came home from the 9-5 job to get changed to work in the restaurant to go to bed to wake up and do it all again (where did I get that energy?).  Gone are the days when I can leave my assignments till the last minute and cram in all the reading in one massive catch up day.  Now it is all about sleep. Feeling tired and sleep.

Today I had to leave Uni early.  Part way through my first lecture I realised I had nodded off a few times and really wasn’t taking any of it in.  I’m already behind, wasting time sitting in a lecture that I’m not listening to doesn’t help.  Weirdly drifting off just slightly into dreams so that I’m not quite sure if what I’m thinking is a dream or part of what the lecturer just said.  Think Nic, does it sound logical that a unicorn would feature in a case for Criminal Procedure? No. Right. Must be dreaming again.

So I message the fiance and ask him to come and collect me.  I left Uni at 3pm, I was supposed to be there till 6pm.  Feeling rather rotten, I came home and crawled into bed.

2 hours later I wake up.  Here is the one of the really frustrating things about narcolepsy.  You wake up after 2 hours and you feel like you haven’t slept at all.  You feel like a grumpy toddler who has missed his afternoon nap.  You are annoyed because that is 2 hours of your life you will never get back.  2 hours where I could have read that 160 page case I need to read, 2 hours where I could have done my exercise plan for today, hell, it’s 2 hours where I could have cleaned the house.  But instead. I slept.  Which would be ok if I awoke refreshed, but I didn’t I’m still tired and cranky and irritable.

And I need to do 60 minutes of cardio (“fitness fat burner”) for Michelle Bridges 12wbt program.  Great.  So I go downstairs and have a cranky little child spat at my fiance (who I now owe an apology to).  Then I have a bit of a cry about my predicament, then I stomp upstairs and get changed for a run.  I don’t even take the dog.

I’m angry.  I’m mildly aware that this is probably some sort of “seven stages” process I’m going through.  I hate that stereotype, I hate that I’m fitting it.  It makes me angrier.  So I’m running and I’m thinking about all the reasons why I’m angry.

I’m angry because people don’t understand.  I’m angry because when people hear you have narcolepsy they say “how great to be able to go to sleep so fast, I would love that”, I’m angry because they don’t contemplate what its like to feel this tired, every day, over and over.  I’m angry at my Mum’s surprise reaction to me telling her I would probably lose my driving licence for a while.  I’m angry at myself for taking on so many subjects at Uni.  I’m angry at all the things I am going to miss out on in my life because of 2 hour naps.  I’m angry at the 12wbt-ers who write on the forums complaining about how they don’t feel like working out today, I’m angry because they don’t know how easy they have it.  I’m angry at my friends who don’t try to understand how hard this is for me.  I’m angry at the Doctors for not finding a cure for what seems like such a simple disorder, I’m angry that the only answer is to take some pretty hard core drugs.

Ok, we get the picture?  The good news is, when your angry you run fast!  When your mad you don’t stop as much as you normally would, you run further than you normally would, it doesn’t even matter that your iPod was not charged for today and you are running in silence listening only to your haggard breath trying to keep up with your angry little legs.

So, today was a bad day.  But I still ran.  I did my cardio like I was supposed to.  I don’t feel particularly great as a result but I imagine I’d feel a hell of a lot worse if I had of taken another nap.

Nx

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When losing is a good thing

Morning morning!

Today is weigh in day and I have lost 900grams which is pretty great after only 2 days of the program.  I’m sure people will lecture me about it only being water or some other such reason but I really don’t care.  That is nearly a whole kilo, or two magarine tubs in the “Mumslea” scale.

Growing up, my Mum always struggled with weight loss, fad diets, etc etc. Her greatest idea (IMO) was for every 500g she lost she would stick a lid from a margarine tub on the fridge with a handwritten update of her new weight.  I always thought it was such an excellent visual representation of what you are actually achieving (imagine 2 tubs of fatty butter or margarine being scraped off you). I’ve noticed many people see a little loss like 500g and say ohhh how disappointing, but when you put it in terms of a whole tub of margarine it doesn’t look so bad does it?

I will admit that today I am aching in a few little places thanks to the last few days of enthusiastic exercise, and today is going to be an “internal excuse” struggle day.  Seeing as I am under Dr’s orders not to drive until I get the all clear I am relying on my lovely fiance to drive me about.

I’m going into Uni early to work on an assessment, I have two thrilling lectures to sit through and a tutorial, and then I will need to wait around until fiance finishes cricket to take me home.  Which means I am leaving the house at 8am and probably won’t be back till after 8pm tonight.. the old me would have made an excuse, the new me is about to go and pack her gym gear to go to the Uni gym while she waits for the cricket game to end.  Today will take a lot of energy for me…

Wish me luck!

Nx

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Did you plan to put on that weight?

This is the question the sleep specialist asked me when I told him that I have put on about 15-20 kilos in the last 6 years.. Boy, did that make me laugh!

It was quite a proud moment to be able to tell the Dr that I have already signed up to the 12wbt and am determined to regain control of my weight.

There was a lot to take in today, I’ll summarise:

  • Nobody really knows what causes narcolepsy;
  • Narcolepsy is basically where you go into REM sleep  (the dreaming part) very soon after falling asleep, instead of a ‘normal’ 60, 90 or 120 minute time period.  Because of this, people with narcolepsy have an abnormal sleep pattern and don’t get as much “good sleep time” as regular people, which makes us feel tired all the time, which is why we have a tendency to nod off at inappropriate moments.
  • At this stage there is no cure, so the symptoms are treated rather than the actual disorder;
  • No more driving for me until I can pass a MWT (maintenance of wakefulness test) I am booked in for this on Monday, if I can stay awake I can have an unrestricted drivers licence (I don’t like my chances);
  • After that, I commence stimulant medication designed to keep me awake during the day;
  • After THAT I go for another MWT and see how the meds are working, if I fail the first MWT this second one may lead to me having a restricted licence which would allow me to drive within 4 hrs of taking medication;
  • We will need to meet with an obstetrician when we decide to have kids to work out whether staying on the meds is a good idea during that time.

All in all the Dr was very positive about being able to help me and very encouraging re my fitness goals.

The Egg Ninja (Photo Source: Flickr Suman0102)

Oh yes, how could I forget the egg story.. I lost the eggs today.. I spent all day looking for them, I was convinced that some kind of egg ninja had crept into the house and stolen the eggs.  Until.. I found them, in the freezer with the bread.. in case you are wondering eggs explode in the freezer.  I’ve heard a lot of people saying that people with narcolepsy do random things and put things in weird places when REM hits them and they are kind of sleep walking.  I was always so pleased I didn’t do things like this.. doo dee doo

I felt quite good today, not too tired, only a little sore from yesterday’s program, today was Toning (Intermediate program).  My new Michelle Bridges DVD set arrived so I dragged the fiance into the lounge room and made him jump around with me.  It was rather hilarious as our lounge room is pretty small but we did it.  The DVD is pretty tough but a great alternative to motivating yourself through the exercises.

I’ve mixed the recipe program up a little so tonight’s dinner was Cajun Fish Stew.  It was delicious!  Tomorrow is our first weigh in day.  Stay tuned for progress!

Nx

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Leave me where I am, I’m only sleeping

Today I felt particularly exhausted.

Exhausted isn’t even the right word, they need to invent a new word for the way I feel lately.  Like I’m carrying around a sack of potatoes on my shoulders and have boulders on my feet and haven’t slept in weeks.  I just want to sleep, all the time.

Today after Uni, I arrived at the supermarket to buy my healthy new ingredients for the 12wbt and when I pulled up the carpark I thought to myself hmm its nice and warm here in the car I might just close my eyes for a few minutes.

I woke up 50 minutes later.

*sigh* to say that I did not feel like doing the shopping or exercising after that is an understatement.

However, the point of this is for me is to stop being so negative and down on myself about my diagnosis and instead to learn how to accept it and work out a way to keep getting the most out of every day.  So, I tried to be pro-active, I realised I hadn’t yet had lunch, so I went home and made myself a yummy healthy sandwich (roast beef, salad and horseradish yum!) and then got ready for today’s exercise plan.

A 5km run and a bunch of horrible fun exercises later, I am now showered and feeling quite positive about today’s achievements.  Sure I may have had a bit of drooly nap in the car park but as far as I know nobody even noticed..

Tomorrow I have my first appointment with the sleep specialist.  I am nervous and excited.  I also have a long list of questions..!

Onward & Upward!!

Nx

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Take 4…

I am jumping on the blogging bang-wagon for the very first time so let’s see how it goes!

I am a little bashful to admit that this is the 4th time I have signed up to Michelle Bridges 12 Week Body Tranformation (12wbt).  I keep getting part way through the program and then I lose interest, get bored, feel so very tired.. oh so tired, lose my motivation *insert any other excuse here*.  However, I have 3 fairly major influential factors coming into this round:

  1. My fabulous friend Mel is doing the 12wbt with me this round – tireless supporter, always has an ear for my vents, and generally understands where I am coming from.
  2. I am getting married in June 2013 – let’s face it, nobody likes a fatty bride.
  3. I have (finally) just been officially diagnosed with narcolepsy – “like the girl from Deuce Bigalow?” I hear you say, yep.. just like that, only not quite so dramatic.  As funny as it may seem it is making a real impact on my life and isn’t as hilarious as it sounds.

So, for all the above reasons I am looking to make some lifestyle changes and plan to update you on my progress via this tricky little blog, I’m seeing my first sleep specialist tomorrow so will also keep you informed on what happens with my medication, the way exercise affects my sleepiness etc etc.. Yes, I get tired all the time, yes this will be a challenge for me, but this is something I have to live with for the rest of my life and I want to be the very best person I can be!

I’m determined to stick with it this time, and can’t wait to share my accomplishments with you.  

Nx

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