To sleep, perchance to dream.

Sleep and I have not been friends for quite some time now. I have forgotten what it's like to simply fall asleep, dream sweet dreams, and wake up refreshed. These days I spend my nights staring at the ceiling and contemplating smothering the happily snoring Mr Grumpy with my pillow as he flaunts his prodigious sleeping skills. (I also fantasise about shaving off one of Mr Grumpy's eyebrows, in my bouts of crazy, sleep-depraved jealousy. You know, just to mix it up a bit). Actually, that's not completely true. In reality I have a persistent, well, persistently crap, sleep cycle  It involves roughly 3 weeks of insomnia, followed by 3-4 days coma sleep, followed by yet more weeks of insomnia,..... repeat ad infinitum.

I simply can't fall asleep. And if I eventually do, I can't stay asleep. Instead, dozing and waking repeatedly, for a few hours. I have tried meditation, sleep hygiene, herbal remedies such as valerian, zizyphus, and camomile  lavender pillows, lavender on my temples, warm baths, warm milk, swearing, begging, crying. None of it seems to work. This old post is still a good reflection of my nights except for the night time pee-fest which the amazing DDAVP has mostly eliminated.

And can I just say that the coma sleep phase is no picnic either. It's not refreshing in the slightest and leaves me just as exhausted as the insomnia, with the fantastic addition of making me even less functional than usual. I'm pretty sure Mr Grumpy is reminded how lucky he was to marry me every time he sees my elegant splayed and comatose form, drooling like a champ onto various pillows. I believe that's what's known in marriage therapy as, keeping the magic alive.

My lack of brain cells and way-to-long list of medical appointments, has meant that this aspect of Bob has been left to languish. I mean how many doctors and ailments can you deal with at one time? It's all about prioritising issues and trying to overcome medical fatigue to drag your arse to yet another appointment. But apparently, it's not that good to ignore insomnia, or so the horrified look on my neurologist's face seemed to say. Rocking up to my appointment pretty incoherent after sleeping less than 2hrs a night for over a week, seemed to alarm her a tad, so she quickly typed out a referral to a local sleep specialist assuring me that he was fantastic. And to my surprise she was right.

How often can you say you see a specialist who is both knowledgeable and friendly? And not fake friendly, genuinely friendly and personable. Even chatting happily to my eldest about Schoolies. To top things off he had recently been to a presentation by my cardiologist on the various forms of Dysautonomia, diagnosis, treatments etc. Jackpot! We discussed tilt tables, clonidine research, alternative and traditional treatments, compounding pharmacies, the works. Whether or not he can help me is almost beside the point, because it is just so refreshing to have a non-stressful medical appointment.

He was thorough and listened. We have a starter plan. I am to have at-home monitoring for a week rather than stay overnight for a sleep study, where as even he acknowledged, I'll likely just stare at the ceiling the whole time and give them little to no information. To make things easier and avoid the travel issue for me, Mr Grumpy can pick up and drop off the gear and he'll even do a phone consult after.

"Whoa!", I hear you say. "A doctor who listens, is thorough, knowledgeable, knows about Dysautonomia, is friendly and wants to make it as easy as possible for me?" Sounds like an urban myth, right? Believe me I was pinching myself just to make sure it wasn't a dream. Day-dream of course, none of that real sleep/dream stuff for me. But it's all true. it was also completely covered, so no out-of-pocket  expense (though the hospital parking which cost me a kidney and the promise of my first born, made up for that). There are some good doctors around, just finding them can be damn difficult at times.

Now as to whether he can help me, I have no clue. But I will bask in the glow of a pleasant medical experience for a change. You really have to appreciate those moments when they happen. After a really dismal and infuriating Dermatology visit a few weeks ago this was just what I needed to renew my faith in the medical system.

Tomorrow Mr Grumpy picks up my snazzy new accessory which will give him a recording of my circadian rhythms, and movements for the week. And from there we will discuss my options.

So a big high five to Professor Snooze, whatever the eventual outcome. Because we need to give a shout out to the good doctors when we find them. And here's hoping that soon I may be able to write a post where all you'll see is a very contented zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.....

Cheers
Michelle :)

PS. I've been lucky enough to be nominated for Best in Show: Blog and best Humour Blog 2012! in WEGOhealth's Health Activist Awards. 

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This one's for Mr Grumpy. After talking about smothering him in his sleep I kinda owe him. Having said that I do know all the lyrics to this one thanks to it's prevalence in our dating days. Not quite as chipper as my other choice Mr Sandman.

FATigue.

 (photo)

Once upon a time I'd love to have a sleep in.  To wake up, look over at the clock and see that it was 1pm.  1pm!  Oh how decadent I felt.  Let them eat cake! (and preferably in bed).  To lie there in comfort, whilst the rest of the world went on, stuck in regimented adherence to every tick of the clock.  A joy.  A forbidden pleasure.  One all the sweeter for remembering how much you'd be yelled at for being lazy as a child if you slept past 10am.  Might as well have dessert before dinner or chocolate pudding for breakfast.  The halcyon days of adulthood and all it's glorious freedoms.

But now.

Ugh!

My bed and I are spending far to much time together.  And whilst there is quantity, the quality is missing.

Take away choice and the excitement fades.

Take away choice and the elicit pleasure of sleeping in on a workday becomes a chore.

Fatigue has bitten me on the arse these past few weeks and there are no signs that it is getting ready to leave.  It's not like I don't experience fatigue on a regular basis, because I do.  It's part and parcel of living with Bob.  The medical sites compare the quality of a Bobette's life with that of someone with congestive heart failure.  Yay!  Apparently it takes us three times the energy just to stand as a healthy person, so my baseline is pretty low to begin with.  But dammit, I am starting to think that I'm carrying not only my own unmanageable boxes of fatigue, but the boxes of everyone in the surrounding district.

I know the change in weather is partly to blame for my current bout of uberexhaustion.  Spring lulled me into a false sense of security.  I was enjoying the sunshine and the mild weather.  The new leaves slowly unfurling in the garden.  The randy birds fornicating left, right, and centre, in my backyard.  I actually sat out in my garden chair and caught a couple of rays.  But then those couple of pesky degrees were added to the weather.  It was a balmy 19C (66.2F for my international readers) yesterday and it sucked the wind right out of me.  I am lucky that I live in the hills surrounding the fair city of Melbourne as we are always 4 or 5 degrees cooler than the city.  But turning into a wet sock at 19C does not bode well for the Summer.  Me thinks my heat intolerance may be getting a wee bit worse.

Being sucker punched by fatigue makes life exhausting.

Walking to the loo = exhausting.

Having a shower = exhausting.

Getting dressed = exhausting.

Standing up to make my morning sanity coffee = exhausting.

Yelling at the kids = exhausting.

Lifting arms = exhausting.

Moving legs = exhausting.

Breathing = exhausting.

Fatigue sucks.

FATtigue.  It has the "fat" built right in and it's that damn artery clogging, heart attack causing, transfat.  Might as well chuck a blended BigMac in an IV and stick it straight in my arm, it could hardly slow me down any more than my current snail lifestyle.

I'm starting to think that the universe is sending me sarcastic messages.  Good old Dictionary.com sent me "Indefatigable", as my word of the day.  Indefafrickentigable.  You've got to be kidding me?  Whilst fatigue may have the "fat" built in, Dictionary.com definitely has the "dic' built in.

So back to bed I go.  Exhausted despite sleeping most of yesterday, and the day before, and the day before that.  No doubt I'll be exhausted when I wake up again.  Woo Hoo Spring. Woo fricken Hoo Summer to come. 


The yawning Michelle :)

Running up that Hill, Placebo (2003), because that's how I feel at the moment.   I'm old enough to remember when Kate Bush originally released this, and may have the cassette gathering dust somewhere, but I do love Placebo and the weirdly attractive Brian Moloko.

Mr Sandman Bring Me A Dream: Insomnia (Part II): Sleep Hygiene

Oh how I hated the hygiene seminars at work (Infection Control being the fancy schmancy name they gave it in the hospital).  Every year I sat through the same mind numbing Power Point presentation.  Rubbed the same goop on my hands.  Washed them.  Had the magical blue light waved over my hands.  And, shock horror, still had goop stuck in the cracks in my dry old lady corpse hands.   Mind you it was a lot less goop than the first timers who looked like they had simply waved their hands in the vicinity of the bathroom.  We IC veterans would sit back all cocky and laugh, "Ha Ha", at their poor hand washing skills (yes, yes, we had it all over Scrubs with our hospital humour).  The IC nurse would tutt tutt at us all, then give us a mini chocolate bar and send us on our way.

Pink Avaguard bottles decorated the wards.  Essentially paint stripper, we bathed our hands in it pre and post-patient.  No wonder we had cracked hands, the damn stuff sucked the moisture from your skin until you were left with nothing but desiccated stumps where your fingers used to be.  Scrub, glove and gown, disposable this and disposable that.

Mind you despite the IC crusades, our hospital still managed to have one of the worst gastro outbreaks in the states history.  The air was filled with a miasma of hospital grade bleach and foetid bodily excretions, that couldn't quite be covered by the nuclear powered air freshener that was pumped out almost continually for the length of the outbreak.  Staff fell one by one to the foul khaki beast.  No patients were admitted for three weeks.  The wards soon resembled a ghost town.  It was brilliant. I got paid to see no patients and pretty much drink coffee and catch up on my reading (see even back in the day I was silver lining girl).  Moral of the story though: Hygiene is important people, or the whole world (or a small Australian public hospital) literally goes to shit.

(This does not constitute good hygiene practices)

Similarly hygiene is important with regard to sleep.  Are you a dirty sleeper?  Do you fail to clean in all the right sleepy places?  Is soap anathema in your life?  Then you need Sleep Hygiene. 

All sleep programs start with learning and implementing Sleep Hygiene practices.  It's like starting Bob treatments with increased salt and water.  It's not necessarily a cure all, but it will give you the best fighting chance to start fixing sleep issues.  And lets face it anything that doesn't involve taking yet another pill is always a good thing.  Basically Sleep Hygiene involves changing and managing the behaviours that revolve around sleep.  So break out that big bottle of behaviour bleach and get scrubbing, there's some learning to be had.

• It Begins at the Beginning: It starts when you get up.  Shocking I know. Who'd of thunk that sleep hygiene starts first thing in the morning.  Our bodies like routine.  When you break that routine it can takes days or even weeks to get back into the normal swing of things.  It's why shift work can be so detrimental to sleep.  Essentially you need to get up and go to bed at the same time each day, day after day.  This sets your body into a routine where 9pm roles around and it already knows it's wind down time.

• Good Morning Sunshine: As soon as you get up go to your window and pull open the curtains or step outside into the sunshine/light.   Light is powerful.  One of the treatments for Seasonal Affective Disorder (SAD) is light therapy, in the form of a light box. The increased light triggers off chemicals in the brain and body which say "hey buddy wake up, NOW". Personally I think this gives you a good excuse to sit outside and have a cup of coffee and tune out the world, kids, husbands, dogs etc for 10 mins.   A little sunshine, a cup of coffee and some me time can simply lift my mood.

• Frankie Says Relax: Relaxation techniques are great to get your body in the mood.  Now I'm not talking nookie mood, though a little exercise can help you sleep, I'm talking sleep mood.  Learning some simple techniques such as Focused Breathing or Progressive Muscle Relaxation can work wonders to get your body in the right state to fall asleep.  Yoga and meditation are also good techniques to help you relax.  Mind you I do my yoga whilst listening to AC/DC so I don't know if that really counts but I find it quite soothing (What? You don't find Big Balls relaxing? What about rather humorous? Okay just me then).

• Gone in 30 Seconds (Make That 20 Minutes): if after lying in bed for 20 mins you are still wide awake it's time to get up.  Go into another room, sit quietly, put on a soft light and read a book or listen to some airy whale song music.  Don't go in the lounge and turn on your favourite Death Metal tunes or play Death Kill Destroy Bloodbath III on your X-box.  The idea is to change your scenery, breathe, relax, and then try again.  

• Your Bed is not the Location for a Small Imaginary Agricultural Enterprise:  Bed's should be used for one of two things.  Sleep or Sex.  Unfortunately most us, myself included, use the old tempurpedic as a laundry, home office, pet bed, library and general store all.  Personally I blame my lap top.  It's a foul temptress, drawing me to use it in bed with it's seductive mobility and perfect lap fittedness (okay so I don't know if that last one is a word, but it's my blog damn it, and I'll make up words and you can't do anything about it, so niki niki na na).  The problem with this is that your bed is no longer associated with blissful sleep or earth shattering, hanging from the chandelier sex that leaves you so blissfully exhausted you can't help but fall asleep.  You need to make you bed and bedroom into a blissful sleep haven, not be tending your imaginary corn field or taking a quiz to work out which Smallville character you are most like.

• Siestas are the invention of Al Qeida:  If you sleep or nap during the day you might as well resign yourself to partying on down with 3am.  A short powernap for 20 mins can be great if you are struggling, but once you go over that you start to put your body clock out of whack again.  This is a hard one, especially when you have fatigue issues.  Sometimes despite my best efforts my body wins the fight and I simply nod off only to wake up two hours later with a sexy line of drool joining the corner of my mouth and my t-shirt.  I know then that the night ahead will not be filled with sweet dreams. 

• Lets Get Physical: Exercise helps you sleep, but not if you are doing it at 10pm.  We should all exercise on a regular basis but no exercise within four hours of when you intend to go to sleep.  Mornings (HA! yeah right I can barely coordinate my body enough to brush my hair in the mornings) or afternoons are fine and shouldn't interfere with sleep.  So try your best to get a little exercise each day.

• Rituals Aren't Just for The Obsessive Compulsive:  Rituals gets a bad rap.  But they aren't all satanic kitten sacrifices or checking your locks 1,000 times to prevent the destruction of the world, sometimes they are good things.  Part of the whole sleep hygiene process is teaching your body to identify sleep cues by developing a sleep ritual that you can do every night to get your body in the mood.  Have a warm bath, put on some soothing music, lower the lights, put some soothing oils in your oil burner, read a book, meditate, what ever takes your fancy.  Doing this every night, your body learns to recognise the signs for bed time. Think Pavlovs dogs, you're ringing the bell to make yourself salivate for sleep.

• Margaritas Do Not Equal Sleep:  Caffeine, nicotine and alcohol are all bad for sleep and shouldn't be consumed within 4-6 hours of going to bed.  It's disappointing I know.  How can margaritas ever be anything but good.  They taste so yummy, come in flavours like strawberry or kiwi, presented in a cute salt rimmed glass, sometimes with an umbrella; it just feels wrong to say anything bad about them.   But the truth is if you partake of a few margaritas, beers, wine or any form of alcohol you're sleep pattern is going to take a hit.  You may initially go to sleep/pass out but your sleep will be fragmented.  Add to that some caffeine or nicotine and you might as well get used to sitting up all night watching infommercials and purchasing more ShamWows than you could ever use in six lifetimes.

• Milk Moustaches Are Sexy:  if you have an empty stomach when you go to bed you'll wake up.  A little snack like a glass of milk will help you feel fuller, and contains the magical ingredient tryptophan, which is known to help you sleep.  Other tryptophan filled foods are turkey and lettuce.  So you could have a glass of milk and a turkey and lettuce sandwich, yummo.  

 

• Feeling Hot Hot Hot:  temperature is also important in getting a good nights sleep.  Having a warm bath is relaxing but the drop in temperature when you get out is the actual signal for your body to get sleepy.  Dropping the temperature in your bedroom can help with dropping off to sleep.  It's hard to pick a good temperature as everyone is slightly different as to what is comfortable (eg my internal thermostat is set at Sahara Desert, so cool to me is about 4C).  In general 18 to 22C (65-72F) is about the right range for optimal sleep.  

 

• Pimp My Bedroom: bedroom design is important.  Cluttered rooms make for poor sleeping environments.  Now whilst we can't all afford (or be bothered) to have a bedroom that looks like something from some boutique hotel and spa retreat, we can do some things to make the environment a bit more conducive to sleep.  Darkness is key.  Invest in some blackout curtains or a sexy sleeping mask.  Quiet is also a prerequisite.  If you live in a noisy area use some ear plugs or use a white noise machine.  If all else fails you can always invest in one of these.

Now, I'm not saying these tips will work for everyone (and I've probably missed a few vitally important ones).  Or that they are easy to implement in our busy days.  And just like Pantene, it wont happen over night, but it will happen.   Sometimes it can take as long as 6wks to get your body into the groove.  But it's a great starting point.  It's free.  And, if like me you are already the human maraca, it's a pill free option and that's always good.  Even if you require medication or take herbal remedies to sleep you should still add these tips into your sleep routine. 

Here's wishing all my nocturnal readers a good nights sleep.

(Image from here)

Cheers
The Sort Of Sleeping Beauty Michelle :)

Whilst I find whale songs and new age music in general like nails on a chalk board, I do have a late night music selection which I crank out to relax.  One of my favs is by Australian band George, featuring the incredible vocals of Katie Noonan, Breathe in Now (2002).

From LYRICSMODE.COM lyrics archive