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

Don’t think about blue elephants

on September 3, 2012

.. Let me guess.. right now you are thinking about blue elephants?

The human brain is a funny thing.  I’m currently at the sleep centre, part way through my MWT.  The deal today is I arrive at 6.30am and will be here till 5pm.  I am all hooked up with the usual electrodes, as it is now my third time so I’m feeing pretty comfortable with the drill here.  Every two hours I have to sit in a chair and stare at a wall for 40 minutes.  It is riveting stuff.


When I did the MSLT I had to nap every 40 minutes, you get into bed and say to yourself OK sleep.. Sleep.. sleeeeeep.. and for the first time in as long as I can remember guess what I can’t do?  Sleep!  It took me an average of four minutes to fall asleep each time, and those four minutes felt like an eternity.  However now I know.. an eternity is actually roughly 40 minutes in duration.

When someone asks you not to sleep, and not to fidget, not to play with your phone, or go online, or talk, or sing, or hum or make any movements generally. Guess what you want to do?  First you want to sleep.. then you get a bit itchy, then you think no no, I can do this I’ll count the minutes out.. that will keep me entertained.  Quick calculation, 60 seconds x 10 minutes = 600, 600 x 4 = 2,400 (those Maths classes are really paying off hey?) Ok so all I have to do is count to 2,400 and I’m good to go right?  Simples?  Hmm around the 150 mark I completely lost interest in that task.

So I’m practising my assessment in my head – the assessment is a moot, (a debate) and I have to know my speech fairly well.  So I go through that.. and get a little bored of that.. ho hum.. right lets count powerpoints in the room we can see without moving our head.. and so it goes.  Until finally finally the lovely sleep technician walks in and tells me I’m free to move around for the next two hours.  Hoorah!  Stage one complete!  I have three more tests to get through today.

Good news is, I was a good little 12wbt-er last night and made my lunch for today, a nice healthy salad and some fruit snacks.  It felt a bit like getting ready for school.


Anyways, I’m off to do some more of my assessment.  The lovely technician has given me the only room with a desk today so I’m all nicely set up ready to work my little heart out before “stare at the wall session #2”.

Don’t think about blue elephants!!



9 responses to “Don’t think about blue elephants

  1. fitlotusblossom says:

    I don’t know how you managed to stay awake without moving for 40 minutes! Hope you got good results from your assessment x

    • nic77e says:

      There were 4 test throughout the day.. unfortunately by the last one I was not going so well, I drifted off twice for about 30 seconds each time. Oh well it was worth a shot!!

  2. shesgotninelives says:

    It’s so funny, narcolepsy. When I did the tests they had to wake me because I hit REM within minutes. Never did your test though?

    • nic77e says:

      Oh, this test was not a sleep test (MSLT) with naps where they wake you up when you hit REM..I’ve done that one before though, I went into REM in an average of about 4.5 minutes in the MSLT. This weeks test was a waking test, MWT = Maintenance of Wakefulness Test, in the hope that I can keep my unrestricted driving licence.. (not going to happen!!)

      I had to sit every 2 hours for 40 minutes at a time during the MWT it involves sitting in a chair and staring at a blank wall for 40 minutes to see how well you can stay awake with no distractions. No fidgeting, no turning around and looking at anything else.. I would say fairly impossible for anyone really, with narcolepsy, really it was just a bit of a farce.

      Every time I drifted off I was like NOOOOO !! Trying to wake myself up again.. so infuriating! I’m still surprised that it doesn’t register as REM because I know I was dreaming and I thought that was what REM manifested itself as, but the results say I didn’t go into REM during that wakefulness test at all. I’ll have to do some more research about that.

      I have to do another MWT now that I am on the meds, I’m booked in for the 1st of October. Hopefully I can stay awake for those 4 x 40 minute periods and then I will be able to drive again. I feel a lot more alert but I still don’t know if I will be able to stay awake for 40 minutes.

      How do you go with your licence?

      • shesgotninelives says:

        Wow never even heard of that test! Well since I don’t have cataplexy and I’ve been fairly stable since starting meds, they haven’t threatened to take my license… I just keep on top of it and know when I feel up to driving or not. I have no idea how I’d do with that test… Probably ok now that I’m medicated, given that I drive a lot.. But I have moments where I zone out and everything gets blurry, so I pull over and grab a coke or something (which is rare that I drink caffeine)… Was this test legally required?

      • nic77e says:

        Where do you live?

        I live in Australia, and the state I am in (Queensland) has a law called “Jet’s law”, named after a young child Jet who was killed when someone with epilepsy was driving and had a fit. Jet died, his brother is in a wheelchair and his mother was badly injured.

        It is now the law in Qld that you have to report any condition you have that may affect your driving, it is also a question when you complete your licence application. If I don’t inform them and get approval to drive I won’t be insured if I have an accident and can get into a bit of trouble.

        As far as I know the sleep specialist has not contacted the Roads and Traffic Authority about it but they have sent me a bunch of material on it. If I pass the MWT then I can drive with a restriction on my licence. It is a pain but I would rather be safe than sorry. Without meds, I’m really no good for driving anything over 30 minutes at a time, lots of breaks makes for a very long trip at times! Luckily my fiancé is a bit of a legend about it and happy to be my chauffer when required!

      • shesgotninelives says:

        Ahh so interesting! I live in Canada and no such legislation has been passed technically, however doctors have the authority to report us if they deem we are unfit to drive. I’ve been lucky in that I have managed to keep my license, but when not medicated I don’t get very far. Luckily I know when I’m in that state and I refuse to drive.

  3. Heather says:

    I’ve never had to do the MWT. I hope I never do! It sounds worse than the MSLT by far!

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