nic77e

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

Dear Diagnosis

“Dear Diagnosis” is a Blogathon started by Julie Flygare inviting all narcolepsy and chronic disease bloggers to write a letter to yourself on your diagnosis day.

I graduate from University tomorrow (well technically, seeing as it’s 205am, I graduate “today” – thank you narcolepsy and your late night inconveniently timed alertness).  This has been an extraordinarily tough week for me.  Just my exams are done, graduation is approaching, I cut back to one lovely part time, 3 day a week job, right when things start to settle down… I experience several paralysis episodes that were extremely frightening.

I have been meaning to write my “Dear Diagnosis” for several weeks now, and this felt like the right time.

Dear Nic,

I know it feels a little bitter sweet to finally have those words in black and white in front of you.  I also know, that you have known that these words were coming.  Relish in the relief you feel now to actually have a diagnosis.  So many others wait so much longer than you and have to fight so much harder to sit through those tests and be referred to the right places.

Some days you will feel like narcolepsy consumes you.  Some days it will fill you with fear, the unknown, ironically you will lay awake at night filled with questions about the future, marriage and babies and your career.  You will wonder many times if a Law Degree was too high a bar to set and you will not recognise this new person who questions her limitations and boundaries and who actually says out loud to people “I cannot do this”.

You will learn that saying “no” is ok, that setting limits is important.  Don’t bite off more than you can chew.  But, stay busy.  It is incredibly important for you to feel like you are accomplishing things and making the most of every moment.  You can do this.  You are strong and brave and clever and you have a brilliant brain that will amaze and surprise you constantly.

Stay grateful.   Don’t stop dreaming 😉 (like you have a choice!) You have so very much to be thankful for.  Life is beautiful and you will come to appreciate the wakeful moments more than anyone else you have ever known.

You will quickly learn that you are not narcolepsy and narcolepsy is not you.  You are a person who happens to have narcolepsy.  You also have blonde hair, big feet, scars on your knee from riding your pushbike and a penchant for cheese and olives.  Narcolepsy is a part of you now and it always will be, but it is not all that you are.

Do not get frustrated when people do not understand because, trust me, they will not understand.  Just remember that there was also a time when people didn’t understand diabetes.  Be vocal but stay calm, be persistent and determined.

You will inspire.  You will succeed.  Your path will be so very different to how you ever imagined it to be.  But it is a beautiful path nonetheless and it is your path.

Don’t be scared, even though everything that you hoped wouldn’t happen, will happen.  Your symptoms will steadily worsen, your cataplexy will become obvious, even to strangers, and yes, the paralysis will come, and it will be scary and you will be terrified.   But you will be ok.

You will find that through all of this, while your head is in the clouds and you continue to dream big, this amazing man (your soon to be husband) will absolutely astound you with his devotion and love. You will learn that the words “sickness and health” mean so much more than you ever realised.

No matter what happens, each time you wake up from a nap you will see so much love staring you right back in the face, so stay grateful and look forward, always.

Love,

Nic

 

 

 

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A favour to ask!! – FDA submission letter

There is a very inspiring lady in America by the name of Julie Flygare who is also known as the REM runner, she does wonderful things to help raise awareness about narcolepsy.  I find her an incredibly motivating and inspiring young woman.  She studied law and was diagnosed with narcolepsy mid way through her degree. (sound familiar?!)  She is a narcolepsy advocate and really embodies my views about improving public responses through education and understanding.

Yesterday Julie attended a meeting held by the Food and Drug Association in America. (the FDA).

Image courtesy of www.julieflygare.comThere is currently an opportunity for us to submit letters to the FDA in the USA in relation to a groundbreaking new patient-focused drug development initiative  – to better inform the FDA’s drug and biologics review process with input from patients who experience particular diseases or conditions.  Narcolepsy is just one of 39 disease areas nominated for the FDA’s consideration. (Details here)

Only 20 disease areas will be chosen.

Julie has confirmed that the FDA will count the number of responses by disease and it WILL matter which communities showed strong support.  The Director of the Office of Planning and Analysis at FDA has emphasised the value of written comments received by the FDA.

I see no reason why we cannot offer our support from Australia (or any other country you happen to be sitting in when you read this little blog of mine!).

Any further developments and breakthroughs in relation to narcolepsy in any country can only provide benefit to us all in the long run. Please take the time to fill out the letter I would really appreciate it. The template is really well set up and easy to complete 🙂

Instructions can be found here:

http://julieflygare.com/fda-letter/

Submissions are due by 1 November.  This is 5 minutes of your day that could really make a great difference to many lives!

Thank you in advance!

Nx

(I’d also like to thank Julie for allowing me to blatantly plagiarise some of her words in composing the above post – and also for all her work in putting the template and easy to follow instructions together)

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love eyes

It is incredibly beneficial to receive support from people who are going through the same thing.  This has been equally true of both the 12wbt forums and the narcolepsy forums that I have joined.

There are 2 narcolepsy forums on facebook that are particularly active.  A common theme in one forum is often people venting because they are frustrated with their partners attitude, lack of support or understanding.  It must be really difficult to live with someone who is constantly tired, who avoids social situations and who wants nothing more than to lay in bed and sleep all day.  This is surely compounded when you add the additional responsibilities of raising a family.  Everyone is human, and it seems that some people deal better with this situation than others.  I hadn’t fully considered the effect narcolepsy can have on your relationship before joining the forums..

Babyo.. You rock!

You see the thing is, I am so lucky.  My wonderful fiance is honestly the best thing that has ever happened to me.  I tell him this constantly, but I don’t know if he really understands.  He never ever complains.  He sends me little text messages all day to see how I am doing.  He sends me messages about an hour after he leaves the house, I know he does this to check I am awake and haven’t fallen back asleep.  He messaged me yesterday when it was hot to ask how I was doing.. (I tend to get a lot sleepier when its warmer).  I never ask him to do these things, he just does them.  I spent all day studying the other day (exams are fast approaching)… after a long day at work on his sore knee he didn’t flinch, he just made us dinner and came in for a kiss and to tell me he loved me.

I am so conscious that I am so lucky.  I read so many stories from people with unsupportive partners. People with narcolepsy who have partners who whinge and complain about them being tired all the time. People doing the 12wbt who have partners who complain about having to eat healthy dinners and to accommodate exercise routines.  I feel bad for them, because my fiance is just so great.  He is my best supporter.  The worst thing he has ever said about my narcolepsy is that sometimes, he really misses my company when I am off sleeping and something fun is happening.

Some days, (when I am being a grumpy little tired so and so)  I really don’t know why he puts up with me.  I can never truly express in words how thankful I am for his consistent insistence that we were meant for each other.

So basically this post is just a little update to tell him how much I love him, how grateful I am for his constant unwavering support, friendship, love and understanding.  You are the best babyo! x

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Small humans.. (aka babies…)

One of the things that my fiance and I will have to consider in the next few years is babies.  Yep.. there you go. I said it. baaaaabiies.  I’m 30.  You fall in love, you get married, you have a wonderful life, you ruin it with some children.. that’s how it goes right?!Image

I’ve been waiting a while for this i-want/really-really-need-a-baby woman gene type thing to kick in, you know, the “clock” that everyone bangs on about?

Quite frankly, I am fairly terrified by the concept.  Don’t get me wrong, I love my nephew, I think he is a gorgeous bundle of sweet smelling (usually) cute faced very kissable and pinchable goodness.  However, my very very absolute favourite thing about my sweet little nephew is that I can give him back to his Mummy at the end of the day.

The whole idea of giving up a nice big chunk of my foreseeable future to watch a small human get slowly larger and larger and finally grow up and tell me he hates me just really doesn’t appeal to me much.  Yes I realise it is different when they are yours, yes I realise that some fabulously wonderful hormones kick in and screw up my brain and make me think that a baby, (well MY baby), is the best thing since sliced bread..

But honestly, when I think about babies, I think about lack of sleep!  I think about broken sleep!  I think about waking up in the middle of the night because this small screaming thing wants you.

Anyway, I went to a wedding on the weekend and thank goodness, it was largely a child free affair.  A friend has just had a baby 8 weeks ago so she was given special bride approval to bring her new baby along.  Lovely little thing that he is, he pretty much just slept and made sweet baby noises all night.  His Mum hadn’t danced once the whole night, so feeling quite guilty at being able to liberally waltz around and do whatever I pleased while she sat there with a bundle of baby in her arms.. I asked if she would like me to hold him for a while so she could enjoy herself a bit.  I wouldn’t say she threw him into my arms, but she certainly didn’t hesitate.. so there I was, on a couch, with a baby.  I will be honest and say, he wasn’t so bad.  He was quite warm actually and a good little cuddler.  So then I start to think ok maybe it isn’t the end of the world if we decide one day eventually, possibly that we would have a baby.

ImageGetting diagnosed with narcolepsy has made me really think long and hard about whether this is a great idea.  My fiance wants kids.  Quite badly, he can’t wait to be a Dad.  It is one of the reasons I love him so much, it is very sweet to see the guy you love talk about what it will be like to have kids one day.  If I came home tomorrow and said “honey let’s have a baby” he would be up for it.. yeah yeah.. he would be up for “it” but also that lifelong create a human thing too.  So, what do I do?  They think that narcolepsy could be genetic.  So there is a chance that my children would have narcolepsy too.  I will be honest and say that my main concern has been fairly selfish so far.  I’m tired.. that’s no secret.  I hear pregnant ladies say how tired they are all the time, of course they are, they are making a little person.  So, what happens when you have narcolepsy and you are pregnant?  SUPER TIRED!  I’m losing a bunch of weight.. what happens when you get pregnant? You get big!  So far it all seems quite counter-productive..

The medication that I am on is a Category B3 drug.  Which basically means that human data in relation to pregnancy is lacking or minimal.  Testing on animals has been conducted with good results.  But this doesn’t mean everything is a-o-k for people.  So, taking medication whilst pregnant is a risk. I respect everyone’s individual right to make that decision but frankly, it is a risk that I am not prepared to take.

So, I’m facing at least a year (probably longer) where I won’t be able to take my magic stay awake medication.  For every baby that we wish to have.  So, basically, it is going to be tough.  I will struggle to work.  I will struggle to do most things.. all for the sake of a little bubba who will also thoroughly enjoy disrupting my sleep…argh!

The sleep specialist has recommended that we talk to an obstetric physician now so that we know what to expect and our options.  We had a long discussion about whether we would go to the private specialist who sometimes operates from his clinic, or whether we would just go with someone in the public system who was familiar with sleep disorders and the effects of the medication.

As we are not in any immediate hurry to start this arduous journey we said public would be fine (and cheaper).. I am after all, a poor student at the moment!  On our way out the door, he said goodbye and noted that he would send me for that referral to his specialist, I said no, not your specialist the public one.. oh yes of course he says.. as you wish he says..

Now, my sleep specialist charged a whopping $295 for my initial consultation.  For Monday’s follow up, he took pity on me and only charged me a fabulously discounted $130.. Now ok.  I understand the man has fancy pieces of paper and expertise that I should be grateful for..  regardless, I still think this is pretty expensive.

I don’t mind paying for good service.  But what really irks me is to get a copy of my referral from him today.  It is addressed to his specialist (not the public system referral we asked for).. and the letter kindly asks if she could please arrange a catch up with Natalie.. and describes Natalie’s symptoms and Natalie’s wishes… and then correctly finishes with a “would be grateful if Nicole could be reviewed in your clinic”..

I’m fussy.. I have high standards.. I guess I just expect that after paying someone $425 and having 2 lengthy consultations with them that they might actually.. oh.. I don’t know.. get my NAME right and not call me Natalie when my name is actually Nicole.. I’d also like it if they would write me the referral for the public system as requested and not to their internal expensive person.

Fussy little thing that I am!!  Ho hum.. will stop my whinging now, I’m sounding more and more English every minute 😉

Nx

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more drugs…?

Yesterday I met with my sleep specialist for an update and to find out if my MWT results were good enough for me to get back behind the wheel.

There is good news and bad news.  Good news is, my results from the MWT are “normal”, which means that the medication is doing its job.  The microsleep I had in the test period was not long enough to cause concern or disrupt the results.  So, that is good news.

The bad news is, the Dr asks me about my cataplexy and how it has been since starting dex.  I haven’t experienced cataplexy as often as I had before, but it does seem to be a bit more intense when it occurs.  Although I have been quite conscious about avoiding situations where I know it will occur, so less smart arses comments, less centre of attention moments and less silly joking around. (I know…!! devastating!)  The few times I have had cataplexy in the last few months I have actually been sitting down so it has been hard to gauge how strong it is.  But I would say still a bit of knee-buckling, slightly longer in duration, maybe 5 seconds, but no collapse.

He then tells me that I have to be completely cataplexy free for 6 months before I can drive.  I’m stunned.  WHY did he not mention this beforehand?  Here I am thinking, great I’m going to walk in and get the all clear and life will be a lot more normal.  No.

In my initial consultation he said we should focus on treating narcolepsy because cataplexy wasn’t a main concern for us right now.  Well, easy for you to say Doc!  You don’t get your licence taken away do you?

Irritatingly, the medication that works best for cataplexy is anti-depressants.  I was prescribed Fluoxetine (otherwise known as Prozac) when I lived in London for cataplexy.  It worked.  I didn’t experience any attacks when I was taking it.  In the end, it was not really worth me being on an anti-depressant permanently for a small little knee buckle, so I decided to stop taking it.

So now, I have to start again.  Which annoys me, more drugs in my system.  But what can I do?  I either drive or I don’t.  Which basically means we either stay here or we move.  For now, moving is not really an option for us, I have one year left of my law degree.  So I need to stick it out.  So.  I will start taking more medication this week.

Of course I understand that it is important to be safe behind the wheel.  The Dr tells me all kinds of horrible stories.  Such as this one.  I certainly don’t want to be a danger to anyone else or myself. But it is hard not to be frustrated by the situation.  I guess I am also annoyed that he didn’t just say this to me months ago when we first met.  I could be that much closer to getting my licence back.  It often feels like the medical profession are just quite happy to plod along at a snails pace.  Do they not realise that every week, every month, every delay is a delay in someone’s life?

My fiance is having his knee operation on 11 December and he won’t be able to drive for at least 6 weeks.

Aunty Em… Aunty Em….!!!

Effectively this means that the two of us will be housebound for a while, having to rely on friends and family to get around.  I’m going to bust out the pushbike and try to get around a bit on that, might help with my fitness goals too.  Although there isn’t really anything close by I can easily reach.. might end up with a bit of a sore bottom!!

I’m just frustrated with the waiting I guess.  Delay’s like this remind me that I am not well.  Collecting new medication scripts isn’t fun either!  But as always.. it could be worse!!

Nx

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Mike Whiskey Tango

So, I went back to the sleep clinic on 1 October to re-sit the Maintenance of Wakefulness Test (MWT) this time on medication.

As you may recall, my first efforts were pretty appalling.. or a resoundingly successful test failure as I like to put it (makes me feel better that way!).

So this time I was allowed to have medication during the test period.  The idea of this test is still the same as the last one, I get hooked up to the electrodes (I’m getting quite used to this now).  Then I need to entertain myself for 2 hours and then the technician comes in and I am asked to sit quietly for 40 minutes on a chair with no distractions whilst staring at the wall.

Exciting times.

My sleep technician is a total gem and we had a big chat about what I should do.  So we agreed that seeing as I am allowed 4 pills per day, that is what I will take for this test.  So I had a pill roughly 30 minutes before each testing period is due to commence.

A friend suggested I concentrate on learning the alphabet backwards.  Not because this is a particularly useful skill, but because its tricky and keeps you thinking and might keep me awake.  So I gave it a go.  I nailed it in the first session.. I got really fast at it, to the point where the backwards alphabet started to sound more familiar than the forwards alphabet.

Then my mind starts wandering.. hmm who decided this alphabet order anyway?  Do Greek’s sing their alphabet to the same singy songy tune..?  You know, thrilling, absolute Nobel Prize winning thoughts going on here.  But.. it worked!  I got through the first test.

You’re Nicked!!

Second test.. not so great.. Now that I can scratch “learn alphabet backwards” off my list of things to do before I die,  what else could I do?  I tried to learn the military alphabet.. Honestly I don’t know the correct name for it, but you know. Alpha, Bravo Charlie.. I couldn’t remember it all.  Apparently I didn’t pay quite enough attention during my childhood when my parents were repeatedly watching back to back episodes of the Bill.

So.. during the second test I felt my mind wandering.. in comes dreaming day dream time .. and woooaaah no you don’t.. I manage to sort of snap myself out of it.. thinking possibly a microsleep?  (quick little head nod moment).. not sure.. I’m so incredibly mad at myself I get little pin pricks of tears in the corners of my eyes.  I need to pass this test, or I cannot drive any more.  I need to drive so I can get to Uni, to work, to have any kind of a semblance of a life in this place.

The technician comes in at the end of this 2nd test period shaking her head at me a little concerned.  It is clear I’m struggling, I’m tired.  She says “what is making you so tired?” .. I retort all smart arsey “umm I have narcolepsy!”.. *little cataplexy moment*.. I apologise for being so obnoxious.  We have a really long chat about my medication.  I explain that while it is great, and helps me immensely, I can still sleep if needed.  I still think about sleep a lot, and I can still nap easily after having it if I let myself lay down.  It’s just that the tiredness is easier to fight now.  She says I shouldn’t feel like that on the medication and tells me I need to discuss it with the sleep specialist at my next visit.  She says if she hadn’t seen me take my medication with her own eyes she wouldn’t believe that I had taken it at all.

It’s while talking to her that I can feel the medication start to kick in.  I get a little prickly feeling along the back of my neck towards my shoulders and a tingle in my inner forearm.  Like a little adrenalin rush.  I’m cursing my body for finally deciding to kick in with the goods at this late stage, right after it is needed.

The last 2 tests I did just fine.  I googled the military/police alphabety type thing in the break.  So now I’m all over it.  I race myself with the alphabet backwards as fast as I possibly can.  I say the military alphabet backwards too.  I spell out words in the military alphabet.  I try to find words that spell out as sentences that actually mean something.. etc etc.. I stay awake!

I received the results today.

Image

As you can see, this is a significant improvement from my last MWT.  The notes say that there was one microsleep present in Test # 2 at about 20 minutes in.  However I am hoping.. that these results mean that I can drive at least after taking medication.

I will know after my visit with the specialist on 22 October..

In the meantime, if you ever hear of anyone wanting someone who can rattle off the alphabet backwards, you just point them in my direction!

Nx

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Pretending to be normal

Sleep is a monster.. raaaaaggh

Lately I feel like I have been pretending to be normal.  I take a little pill a few times a day and all of a sudden, the pretending is easier.  All of a sudden sleeping is not the only thing I can think about.

The thing is, its still there.. in the back of my head.. like a monster.. this tired feeling.  When I feel the medication wearing off I realise all of a sudden how tired I actually am.  Knowing that I could sleep for hours (or days) without even trying.

When I wake up in the morning, I feel like I haven’t slept at all.

busy dreams .. all night..

Like I’ve spent the whole night doing exercise, that exhausted feeling you get after a double gym session where you really worked super extra hard.  When you get home and sit down and couldn’t be bothered having a shower because you just want to close your eyes. . just.. . for a minute.  I feel like that when I wake up.  I’ve spent the whole night dreaming, and yelling out in my sleep and going on adventures and having conversations out loud.  I wonder if spending so much time in REM and dreaming so much burns extra calories?

I’m supposed to be working on my assignment.  So far, not one word has been written, but a lot of reading has been done.  I find that during the day now, the medication helps me get through the cases and the journal articles and the pages and pages that law students are asked to read.  However, I still don’t feel quite ‘normal’.  I still feel tired.

I’m still not supposed to drive.  So I’m at the mercy of my lovely fiancé.  You may recall from my previous post, that he has done his knee, his ACL in fact.  He is due for surgery in December.  So.. he is not in a great driving state at the moment either.  My friend is borrowing my car at the moment and fiancé is my taxi-man.

I’ve met some new, (more positive) people online who are doing 12wbt and they have invited me to join them for bootcamp on Saturday (today).  It starts at 5.45am and is a 40 minute drive away.  Despite this, I was still excited to go and looking forward to meeting some new faces.

So, is it reasonable to ask my lovely (but injured) fiancé to get out of bed at 5am to drive me 40 minutes to get to bootcamp and then to come back at 7am to collect me from bootcamp?  I decide, that yes, of course its reasonable that is what you do when you love people isn’t it?  Hmmm not today kids, not today.  He is sore, and has a delivery due this morning for work, so he has to be at home, so we decide that if I have a pill and get myself ready and am feeling ok I can drive myself to bootcamp.

Yesterday I ended up helping my friends move, it wasn’t planned and my day was a bit upside down in the end.  I had a pill at 6pm to keep me going.  I’m not supposed to have it after 4pm.  So.. I was up past midnight (rare for me).  And when I woke up at 5am today to go to bootcamp.. I felt.. well I felt a bit like I’d already done a bootcamp.  My eyes were sore, my head hurt, my body was tired.

I lay there trying to tell myself I felt ok, and that it was safe to drive 40 minutes at this hour of the morning.  Eventually I realised I was just kidding myself and messaged the girls to say I couldn’t make it.  Struggling to come up with an easy way to explain this very frustrating situation I am in.

There are some places you can live where not having your license is do-able.  Where I live, it is not really very feasible.  We are at least a 20 minute drive along the freeway from anything useful.  The public transport is inconsistent and time consuming and was designed by someone who has obviously never needed to actually get anywhere useful in their lives.

Not being able to drive, and being constantly reminded that I am not supposed to drive, is a constant reminder to me that I am not well.  A reminder that there is something wrong with me.  I know it could be worse, I know it could be much worse.  Lately I just feel as though a bit of my independence has been taken from me.

No wonder senior citizens complain about moving out of their homes and being shoved into nursing homes.  No independence really sucks.

Sorry crazy lady.. no license for you!

I have my MWT on Monday to see if I can pass their ridiculously difficult “stay awake” test while on meds so that at least I can drive after taking medication.  I am really nervous about it and very worried that the answer will be no way crazy lady, you better stay off the roads for good…  We are not sure what the plan needs to be if that is the answer.

Keep you posted..

Nx

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The simple things

Hello hello!

So much to fill you in on.  Ok, so… today I received the very difficult “stay awake” test, I knew it wouldn’t be good.   By the fourth and final “40 minute wall staring exercise” the sleep technician and I were having a bit of a laugh about it all, I was nodding off all over the place.  I received the results today, the official assessment is “impaired wakefulness” I’m no expert but judging from this report I won’t be driving without medication anytime soon.

The results are summarised below:Image

Basically, there were microsleeps present in all 4 of the wakefulness test periods, but you can see from the above that I didn’t go into sleep latency in the first test period, but did do so relatively quickly in the remaining 3 tests.  Sleep latency is basically the time it takes you to fall asleep.

So, the test was a little depressing, but the upside of the test was that yesterday I was able to finally start the medication.

I honestly have no words to describe how fabulous it feels to be “normal” again.  Yesterday my lecture started at 8am, usually I can make it through about 30 minutes before I really start drifting off and losing focus.  Not yesterday, I was alert, on the ball, listening, taking it in, making notes, paying attention, for the whole two hours.  I just cannot explain how that makes me feel.  I kind of want to do cartwheels or something, but instead I’m walking around with a big smile on my face.  I stayed awake until 11pm, went to dinner with friends, almost finished my assignment.. cleaned the bedroom up, vacuumed, you know.. just functioned..!

It just goes to show you that it really is the simple things in life that matter.  Being able to go to class and take in what is being said without having to come home and go through the whole lecture again via recording.  What a feeling!  In case it isn’t coming across, I’m rather elated!

Downsides to the medication are a strange metallic taste in my mouth, and a decrease in appetite (although, at the moment with my weight loss goals I am not really putting that in the downside category!), I’m also incredibly thirsty.  Other than that, I feel fantastic.

I just got back from taking the dog for a run.  I think she must have read my last post.  Because today it was me running in front looking back to see if she was ok!  I think perhaps it was a bit hot for her today (that combined with my bouncy energy) I had to walk home because the poor little thing couldn’t keep up with me.  Perhaps tomorrow I’ll run a bit earlier in the morning so its not so warm.

I will say these last few days my schedule has been a little out of whack as I had the sleep study on Monday and my assessment was today.  Good news is the assessment went really well, and I think I will get a great mark.

I’ve booked flights to go down to Melbourne with my sisters to try on wedding dresses on the 1st of December, so that is a great goal on the horizon to aim for.  All in all, things are looking up!

Nx

http://www.youtube.com/watch?v=TcglnY_xGfc

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Don’t think about blue elephants

.. 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.

ImageImage

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.

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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!!

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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