nic77e

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

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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Where am I?

Last post was 10 days ago, it is most unusual for me to have nothing to say.  Truth be known, I have actually had so very much to say that I haven’t really known where to start.  So I’ve just generally avoided the land of the world wide web.

Firstly, I had an assignment due, ok so that isn’t entirely accurate.  I have had 3 items due; 2 assignments and 1 “take home exam”.  A take home exam is a really wonderfully creative invention lecturers have come up with to put the wind up students, basically you receive your assignment on Monday morning and its due in a few days later.  I like to tell myself that my general consistent tardiness and “leave it to the last minute” approach has actually been years and years of practice for take home exams.  Nothing like a deadline to get you moving.  So, I received the exam on Monday, started it on Wednesday, went to work on Thursday and finished typing it out at about 4.55pm on Friday.  I think it was ok, as usual it could have been better.. if only I had started earlier..! HA! (story of my life!)

Unfortunately because of my lovely little narcoleptic condition I am still behind on lectures.  So I spent a fair bit of my time last week actually listening to the lectures I actually attended in body only, as I happened to be fast asleep for most of it.  I didn’t start the meds till week 6, so that means I have 5 x 2 hour lectures x 6 weeks to catch up on.  I’m not great at maths (I’m studying law, not finances) but even I know that is a lot of catching up.

Turns out listening to the lectures really helps to get your head around the content for your assignments…  This however, involved what can only be described as a sh*t load of typing.  I’m a fast typer but I am not an entirely “correct” typer, I mostly use my right hand due to lazy bad habits that started when I was a teenager, I know the way I type is bad for my shoulders, but hey.. I’ll be ok right?  Wrong?  As often happens to me, I got typers arm, old lady arm, laptop arm, keyboard arm, whatever type of arm you want to classify it as, once again it happened to me.  So, I get all stuck and sore in my neck and shoulder and arm region which is painful and wakes me up at night (just what this narcoleptic lady needs).  It also makes me walk around a bit like frankenstien which is always a good look.

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So because my local osteopath is a complete and utter rip off and honestly does very little to help me, I take some anti inflammatories and heed some friends advice to heat pack it and lay on a tennis ball a bit to get into the problem area, which I must confess, did more to excite the dog (who thought we were up for a quick game of fetch) than it did to improve my shoulder pain.

Things were a little better by Thursday, and then as I was getting ready for work, shaking my dress out to get rid of the creases (because ironing is for whimps right?) and whoopsie daisy, there goes my back.  So.. now I’m crawling around on the floor moaning that I need to go to work because I don’t have any hours at the bottle shop this week so my one day in the law office is it for my income this week.. so.. I take some pain killers and bumble myself off to work.

Oh.. did I mention that the fiance did his knee at football on Monday night?  A fine pair we make at the moment, he is in a brace, has crutches and is awaiting surgery, and I’m crawling around on the floor looking for my shoes for work.  I’m also not supposed to be driving at the moment because of that whole fall asleep while driving business.. So between the two of us, we have 2 cars and no able bodied drivers.. Goodie.

So I went to work and sat bolt upright all day and somehow managed to get through the day, then spent the next day frantically typing which has kind of brought back the shoulder business.  So.. there will be NO PRIZES for guessing how many exercise sessions I completed this week?  Zip. Diddly. Squat.. no, no squats.. just zip and diddly.

I’m quite frustrated with myself, I was doing so well and then niggly little old lady injuries kick in, Uni takes over for a week, and despite my excellent efforts last week I lost 100 grams.  Which I was originally OK about but the more I think about it the more irritated I am, I put in a fair amount of effort last week and everyone else in the Bikini Girls forum seemed to have the wheels fall off, meanwhile I just kept on shuffling along while they all pulled big numbers.  I know its a race against me etc etc.. but you can’t help but think dammit, I’ll just go to the pub then like the rest of you if that’s what gets the weight loss happening.

In other news I have found the internet to be a bit disheartening of late.  I joined 2 new groups on bookface that are Narcolepsy support groups, generally really fantastic to be able to speak to other people who are going through similar things, and also in a strange way nicely relieving to hear that other people have it worse.  Funny how we have this awful human reaction to be happier with our own situation based on the relevant misfortune of others.  Anyway one of the groups (Narcolepsy Australia) has only been opened in the last few weeks so we are all getting to know each other, my phone is beeping every few minutes with updates and it is quite intense at times to be honest.

On top of that there is a locally based 12wbt group I was part of on bookface that has really been quite awkward to be part of, not at all what I was expecting or hoping for, one member clearly has some personal things happening with her relationship at the moment and often posts unusual comments, quite awkward for total strangers to be reading some of the things she posts.. Bookface is always bouncing with activity from the group and it can be hard to keep up, anyway someone finally snapped in internet land and made a comment (that I 100% agreed with) about the inappropriateness of it all, well, let the b*tchy games begin ladies!   What fun that was to read.  I deleted myself from that group and hopefully will regain some sanity as a result.

Lastly, but certainly not least.  A very sad thing happened yesterday. The fiance and I drove past  the scene of a really awful accident on a main road where a cyclist had been hit by a car.  I’ve never seen anything like that before.  The cyclist was .. well.. not in a very good way at all.  If you are one of those people who is going to go all emotional and “post traumatic” on me, I suggest you quit reading now.

The police and ambulance had not yet arrived and I would be surprised if it had been more than 2 or 3 minutes since the accident had happened.  It didn’t look as though the cyclist had worn a helmet.  It was plain to see that the cyclist was dying.  You could tell from the strange unnatural way he was slumped, and also the massive puddle of blood that was pooling around his head.  The most telling part was the demeanour of the drivers who had gotten out to help and were surrounding him.  Their body language said it all, hunched shoulders, heads down, general looks of impotence, two guys stood close to the cyclist and you could see that they were hesitant to even touch him and really there was not much point in taking the guys pulse it was easy to see things were dire.  The news said he died in hospital but I suspect that is just a “nice” news way of reporting what happened.

Strange the effect this has had on me, to see someone in their last few moments of life.  To think about the effect that what happened will have on the driver of the car.  I know that’s life, and I am always one for saying “you could get hit by a bus tomorrow”, but yesterday has really hit home for me.

Life is short, it is certainly too short to be whinging on forums about husbands and relationships, and life is too short to not enjoy every moment.  The good, the bad, the exercised, the non-exercised, the sleepy moments and the wide awake moments.  I try to stay positive, and more than anything I think this has re-emphasised to me the important things.

So, I spent an hour laying on the headland at Burleigh today just enjoying the day and the view and it didn’t matter so much that I wasn’t in London, or that I had a cranky fight with the fiance last night, or that I’m still overweight, or that I probably should have been exercising.  I just enjoyed the view.

So to all my beautiful my internet-land friends that have been asking where am I?.. I am just.. right.. here .. 🙂 Nx

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12wbt blogger challenge #1

1. Describe yourself in less than fifty words. What is it you want us to know about you? (Of course if you need more than fifty words, consider using a picture)

I turned 30 this year and am half way through my law degree.  I turned my life upside down 2 years ago when I decided to “gamble everything for love” and move back to Australia from London after meeting my wonderful boyfriend (now fiancé).  I have recently been diagnosed with narcolepsy so my blog documents me coming to terms with that whilst also following my 12wbt journey.

2. This program is called a transformation. When you signed up for this round (whether is your ninth round, first round or somewhere in between) what was it about yourself you wanted to transform?

Over the last few years I have become increasingly tired during the day.  I now understand that this has largely been because of narcolepsy.  I  have slowly but surely done less and less exercise as each day I felt more zapped and lethargic.  I started the program weighing in at just under 80 kilos.  My goal is to get back to 63 kilos and to become more active generally to improve my health and the way my body deals with narcolepsy as well as being a happier person on a day to day basis.

3. One of the phrases Michelle Bridges says that has struck a chord with me is that we should be striving to be the best version of ourselves. To me that means we don’t have to change ourselves completely in order to have a successful transformation. What is it about yourself you are happy with right now? It can be related to your mind, body or soul, and of course there may well be more than one thing you are happy with.

I love generously and stand by my convictions.  I am determined and driven and love life.

4. What aspect of this program do you think will present you with the toughest challenge. What are you going to focus on to ensure you feel successful at the end of the twelve weeks? How is your answer to number 3 going to help you overcome this challenge?

Burpees!

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I really honestly think they are evil.  I feel heavy and horrible when I do them and often come up with very creative ways to get out of them.  I’d also much rather do cardio than tone, but I know toning is important.  So, my challenge will be to JFDI when it comes to those exercises I don’t wanna do.

I have great motivation this round, I am getting married in June next year in Koh Samui, trying on wedding dresses the week after the round finishes.  Nothing like the biggest day of your life to spur you on!

Always in the background is a desire to improve my lifestyle generally and to be able to explore ways that a PWN (person with narcolepsy) can still life a full and productive life to help other people who are living with the same condition.

I think my determination (and my stubborn side) and love of life will help me achieve my goals.

5. What is it you look forward to the most in the next twelve weeks?

Making new friends, achieving my goals, all those little “wow” moments where you are proud of the little things, the running a bit harder or faster or doing more pushups than you did the week before.

6. You’ve now completed at least three days of the program. What has surprised you the most about how you’ve coped with any challenges so far in the twelve weeks?

Ok so I’m a little late in getting this blogging challenge completed – it is now Week 3 (as opposed to Day 3!) So far I’ve been impressed with my ability to say no to temptation  food moments, especially to things I love like cheese!  And I have been surprised by my motivation skills, kicking the butts of new 12wbt friends.  I just need to kick my own butt more often!

7. Can you describe what you want to see, think and feel when you look in the mirror on Sunday 18th November 2012.

Conveniently the end of this round co-incides with the end of Uni exams for the year.  So, I’ll be smiling because I only have a year to go of my degree.  I’d like to see a happier, more awake me!  Looking better than I have in years in my bikini! I want to think: I can see this girl looking fabulous in a wedding dress in 6 months time!

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The race against me

Good morning!

On Saturday as promised, I woke up early and met my future bro-in-law down at the local park for a 5km run.  The run is organised by a group called park run, I strongly recommend giving it a go if there is one in your local area.  Everyone is so friendly, the event is so well organised, its free, and they have even organised for a coffee cart to come down so you can socialise afterwards.  You get a barcode when you register and at the end of the 5kms you scan your barcode and then they upload your times to their website, you even get your PB tracked and everything.  I didn’t register in time so my details are not in the system but I am listed as #48 here.

Ok so, at first glance not such a glowing result.  48th in a pack of 59 people leaves me straggling in my awesome shuffle style somewhere near the back with the old ladies and the injured people.. ok I will confess, there were some old ladies who were flying past me.  However, on Saturday I was very firm in my head that you have to start somewhere, and it is just a race against me.  I’m only trying to beat my time, burn my calories and make my body feel better.  I was hoping for something under 30 minutes, instead I finished in 34 minutes. But that’s ok, the only way is up right?

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I do feel sorry for the lovely lady “Susie” who finished just behind me.  I pretty much dragged Susie most of the way, why is it so much easier to encourage a stranger or friend rather than yourself?  Poor Susie was just behind me for the first 2kms or so.  We’d both stop at different times and pant and puff walk for a bit and then keep plodding, eventually I turned to her and said come on, let’s run together.  So we ran side by side for the next  few kms.  When she went to stop I urged her on, and something about it kept me going too, when we got near her family (her kids and their grandparents were cheering her on!) I’d say come on, lets fake it past them and make out like we are not finding this hard.  Eventually she fell behind again but on the last hill I was doing my panty-puff-shuffle-dawdle thing and she came up behind me and said ok it’s your turn now, let’s run together.. and off we went pushing each other up the hill for the home stretch.  It was a lovely moment of camaraderie between two strangers, I could almost hear Chariots of Fire playing in the background.

It made me miss my friend Mel who is constantly saying that she wished I was still down in Sydney to train with her.  We still manage to do a great job of kicking each others butts via Skype and text though so all is not lost.

I’ve actually really enjoyed communicating with people via this blog so far, whether it be for narcolepsy or 12wbt.  There is something encouraging in the thought that you are not doing it alone, not to mention that your little posts into the world wide web are actually being read by someone.

I’m also part of a lovely little forum post on the 12wbt site with a group of ladies where we sometimes refer to ourselves as the “Bikini Girls” we all have upcoming weddings to attend in tropical locations (whether it be our own or a friends) or upcoming holidays that will involve donning a bikini at some stage so we have sort of  banded together and are motivating each other, following each other on My Fitness Pal etc…  Oh the wonders of modern technology.

Now that I have the “wonder drugs” I’m starting to catch up on Uni again which is such a great feeling.  I still don’t feel like I’m quite “there” yet with Uni and fitness and a set routine but I am getting there.  Interested to see how “Weigh in Wednesday” goes because we have had guests the last few days and the tendency to over indulge in BBQ food and unhealthy portion sizes is always great.  I was not as naughty as I normally would be, but I certainly could have been better.  So we will see what the scales have to say about it in a few days time.

Keep :-)lin!

Nx

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3 days without sleep

Happy Friday kids,

I read an interesting article here today.  Quote: “Most people would have to go 3 days without sleep in order to experience the symptoms of sleep deprivation an untreated person with Narcolepsy experiences everyday” Who knows if this is technically accurate, but it sounds about right to me!

I’m certainly feeling some of the side effects from the medication.  I am not hungry.  At all.  Which for me is just about one of the strangest feelings I’ve had!  I’ve always been one of those people who eats everything on their plate, and anything out on the table, anything anyone else leaves on their plates, anything that didn’t get put back in the fridge yet.. etc etc.. However, since taking the meds, I’m just not hungry, rather disinterested in food actually although I’m not noticing such a strange taste in my mouth anymore I just don’t feel like food.  Today I only made it half way through my sandwich.. anyone that knows me will know that this is unheard of for me!

I’m really feeling it in the late afternoon/early evening when the meds wear off.  Very very zonked, tonight I needed a nap when I got home from Uni.  As far as I can work out the meds work for about 4 hours.  I think the feeling I’m getting at night is just the real narcoleptic me kicking back in, it is just such a contrast to the medicated me that it is a bit of a shock to the system.  Comparing how I used to feel each day to this new energetic me is chalk and cheese.

That said, I haven’t been very good with my exercise this week.  I’m ordering a Polar HRM with the 12wbt discount this week so that I can track my calories because it is really hard to know if you are doing enough each day.  I’m also doing a 5km run tomorrow morning with future bro-in-law, there is a free running club that goes from just down the road at 7am each Saturday.  So I’m giving that a go.

I’ve been a bit naughty today and haven’t studied, instead I’ve been distracted looking at wedding dresses on line, I’ve worked out a few that I want to try on, I’ve also found a few that I’m only trying on if I win lotto… It is all great incentive to stick to the program and lose some weight!

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.

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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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A matter of opinion

The funny thing about starting anything new is that everyone has an opinion.  I recall reading somewhere that when people were trying to make you feel bad about your weight loss goals you should just smile and say “thank you for your support”.  Bringing the focus back to them and their behaviour seems to work.

I know there are thousands of programs out there, I have explained the one I am doing, Michelle Bridges seems to know what she is doing and I am committed to her program.  I find it really interesting that the first reaction from people isn’t “good on you, I hope you succeed, what a wonderful goal”.  Instead people would rather put their two cents in about why such and such a program is better and why your attempts will fail.  So I’m staying firm and holding my ground and not listening to the blockers!  They can suffer in their jocks when they see me fit and healthy!

Yesterday was SSS (Super Saturday Session) I must admit I have been feeling a little “blah” about exercising these last few days.. Quite frankly I am very over burpees and am surprised at what I will do to get out of doing them!  Anyway, yesterday I ran the furthest I have ever ran in one go in my life.  Instead of the usual run around the lake I stopped the car about 2kms away adding an extra 4kms to the run so around 8kms in total.

I am a “shuffler”, my running style is not pretty… I struggle along, at a pace that is so slow I’m not quite sure it is technically a run.  The poor dog is confused, sometimes walking, sometimes running ahead a bit wondering what is wrong with me.  However, I am also a “stopper”.. I look up and see anything, a tree, a fence, a bend in the road, a person up ahead, if I can get to that thing without dying then I can walk for a bit.  My friend is a “ploddder” she keeps going, plodding along, slowly but never stopping.  So, I decided to combine the two techniques yesterday.  I shuffled, but tried very hard not to stop.  Of course, I did stop, but only at the bubblers, of which there is only 3 on the track.  So really for me this was quite an impressive feat!

I’m still very behind in my preparation for my assessment which is on Wednesday morning.  So today is more study.  It is supposed to be rest day but I think I will smash out a fitness dvd later, I’m quite liking them to be honest (no burpees!)

Tomorrow I have the MWT (Maintenance of Wakefulness Test) which starts at 630am and goes for most of the day. I’m not sure what it will entail, the last test MSLT (Multiple Sleep Latency Test) had me getting into bed for a nap every 2 hours to see if I could sleep at each nap.  Apparently the MWT involves sitting upright in bed with a dim light behind you (not in line of sight) you have to stay awake for 40 minutes and you need to attempt this several times throughout the day.  Honestly, I do not think I will be able to do that, I struggle when I’m actually doing things, but sitting on my own doing nothing.. I don’t like my chances, but I will give it a crack.

I’ll try to squeeze in a workout after that if I feel up to it before heading to the airport with the fiance to pick up some friends.  I am determined to get some sort of fitness in tomorrow!

Nx

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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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