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

Good days and Bad days

on August 29, 2012

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.



6 responses to “Good days and Bad days

  1. Tara says:

    I love you.
    Reading this makes me so sad…but you know it’s so good to sort of understand what you have to do, your daily struggle. This blog is so important for the family to see. I’m so proud of you. Your so strong (stubborn maybe?)

  2. fitlotusblossom says:

    I’m sorry that life is such a struggle for you, dealing with narcolepsy and everything else you have going on 😦 well done though on going for a run despite how angry you felt at the whole world, and good luck for the rest of 12WBT!

  3. Melinda says:

    I can vouch you normally are a cheerful person! I love the honesty in your post and will continue to love it! Don’t change. We will get you through all this! xoxox

  4. amberlyons says:

    Good on you for still going for your run. It’s all fair and well to be positive but you have to be realistic too and that is what this blog was about. Anger is a normal emotion and you did a good thing by getting it out and not letting it eat you up by suffering in silence.

    Don’t think too much into the silly things people say when they find out you have narcolepsy. Honestly and from personal experience, people generally just do not know what to say in the face of other peoples sturggles so they make a joke about it, appropriate or not!

    Good luck with the rest of the challenge.

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