Wednesday 25 May 2011

Busy times in Rusty Town.

Well it's been a busy few weeks here at Ch√Ęteau Rusty.   I've had a birthday, shopped till I dropped, a new haircut, danced the light fantastic, and started back at out-patient physio.  The old brain has been a bit overwhelmed, as has my body, hence the lack of posting.  Hibernation has been order of the day.

I did manage to pump out one post over at Studio 30 Plus where I was honoured to be a featured blogger.  I'm sure I have done my mamma proud by using the words "sucked donkey balls" repeatedly in a post.  I can see her sending copies to all her friends at the gardening club.

The lovely Phoebe aka Lady Melbourne has put up her post about our shopping day for the competition I won.  I will have to say it was one of the best days I've had, and both Phoebe and Jo, my stylist, were truly lovely.  I went in as a shopping tragic and left holding firmly onto my newly rediscovered mojo.  A huge thanks goes out to my gorgeous friend Kerri who came along for the ride and pushed me around in a wheelchair at the Westfield Shopping Centre for 3 hrs.   And Mr Grumpy, who took the day off work to drive me around town.  I will post about the day and pop up a few extra photos in a little while.

Well it's time for me to head back to the cave for some further hibernation.

Michelle :)

Monday 9 May 2011

The Ministry of Silly Walks

Walking shouldn't be hard, should it?  If my eldest could walk at 9mths, surely I should be able to walk with ease at 37.  Mind you, I am walking like he was at 9mths.  Furniture and wall walking my way through the world.  It's a good look.  What is cute and gives rises to "oohs" and "ahhs" and "who's a clever boy" at 9mths, is not met with the same enthusiasm by the general public at age 37.  Instead I am the recipient of 'those' looks.  And little whispered comments, which seem to include the word 'drunk' quite frequently.  If only, judgmental old biddies.  If only.

These past few weeks I have been walking like a drunken sailor, minus the barrel of rum in my belly.  I have found that my gait is getting wider, what in the old work days I would have thought of as a classic alcoholic ataxia.  Only I have had hardly enough alcohol to pickle an olive, let alone my cerebellum.  My muscles have been uncooperative little buggers, and my weakness increasing.  They simply feel 'wrong' when I walk. 

Can't wait to give Uberneuro that descriptor when I see him in June.  A patient's inability to explain their symptoms was always a frustration for both parties, back in my work days.  I would hand them a sheet of descriptors to pick from when they were finding it particularly difficult. Maybe I should see if I can find it again, to use for myself. Damn, that's a depressing thought.

I don't really know why it's come to a head lately.  Maybe it's just the effects of my recent back issues tipping things over the edge.  I'm not really sure.  Given that my pulse pressure (systolic minus diastolic) has also been in the toilet I think Bob is getting a bit frisky in his old age.  When 40 is optimal, 30 is considered okay, 20 is considered shock, and all I can muster is a pissy 9, well it's not a particularly good situation.  It could just be a phase, and I'm truly hoping that's the case.  All jokes aside, the past month or so has really been hard and I've had about enough.

(Was lying down at the time I recorded this)

My neuro symptoms have been getting worse overall.  I tick and shake, and have muscle fasciculations up the wahzoo.  Managed to burn myself on the stove again thanks to the reduced feeling in my hands (good old SNAFU), which is always fun.  I asked my youngest if I had burnt my finger and he rubbed it, taking off a layer of skin.  Apparently what looked like flour was a wee bit of charred skin and we both had a bit of an "oh shit" moment.  

Luckily I finally have my appointment date so fingers crossed Uberneuro will have a clue.  I used to take classes with him back in the day so I am confident he's the go-to-guy when no one else has a clue.  But seeing someone I knew on a more professional basis will be uncomfortable to say the least.  I know his current Neuropsychologist quite well.  I was on our state professional board with her, so I'm really hoping I don't bump into her.   It's moments like those that I feel really self-conscious and it all gets a bit confronting. Ugh. That's all way to serious and depressing.  Will now play my happy song in my head and settle down to a nice bowl of denial.

I have finally taken the plunge this past week, and am now the less-than-proud owner of a walking stick.  I have put it off for a very long time, despite having balance issues on and off for quite a while (okay couple of years).  I knew I needed one, but my mind screamed "NOOOOOOOOO........" every time I saw one.  Now before anyone starts saying, "well you have to be practical Michelle", you should also know I will beat you to a pulp with my stick if you even start to go there.

People need to realise that:

Logic and Chronic Illness are not friends.  

They're not even casual acquaintances.  

In fact, if Chronic Illness was to serve Logic a drink it'd probably spit in the glass and smirk, whilst they watched them drink.

It's a mind space that you are either in, or you're not.  There's not a lot of grey.  Logically I have known that I needed some form of walking aide for well over a year.  But every fibre of my body has rebelled against the idea. 

I had a similar predicament with the shower chair.  I have a shower chair now, and I love it.  It means I can shower without face planting.  It means I can have the water above tepid, and stay in for longer than a nanosecond.  And it sure as hell beats sitting in the bottom of my manky shower.  All good things.  But the lead up to getting a shower chair was not paved with lollipops, kittens and rationality.  

Buying a shower chair represented tangible proof that I was broken.  Ptooey!  I spit on 'broken'.  "That's not me," I shouted whilst raising my fist in the air in defiance.  Not that anyone was listening.  Except my dogs, and they just looked confused.  It certainly didn't help that they were sold in the 'Aged Care' section of the store.  After a long period of denial, ranting, head shaking from a long suffering Mr Grumpy, and traumatising my dogs, I purchased a shower chair.  There may have been some pouting and swearing involved.  I may also have forcefully thrown it at my shower, rather than going for gentle placement. Whatever.

I still remember sitting down for the first time and thinking to myself,

"I'll show them.  It wont make one bit of difference.  I'll be right and they'll be wrong.  And I'll say see, see, SEEEEEEEEEE I was right, losers".   

But damn it.  It was better.  And easier.  And they were right.  And I was wrong.  Bastards.   See the extreme lack of logic involved?  I think I should be studied.  Or at least better medicated.

The reality is that I am now disabled.  And at some level I acknowledge that.  But there is a very large irrational part of me that continues to rally against that label. I spent my professional life, working in neurorehabilitation.  I helped to plan ways to maximise independence, including the use of lifestyle aides like shower chairs.  I know the theory.  I've seen it in practice.  And yet I still rally against it all.  As I said, logic is not my friend.

The acquisition of a walking stick has fallen into the same category of rabid illogical thought processes.  No doubt there will be many other items that will flail beneath the sword of irrationality, before I finally reach the point of acceptance and pull my head out of my own arse and acquiesce.

I am still on the lookout for a groovy walking stick, is that an oxymoron?  I'm not sure.  I really want one of those classy silver handled, black ones that look like they should be in an Agatha Christie movie.  But will have to save up my pennies.  I do feel as though I should be wearing a top hat and a monocle when I walk with my current stick.  And saying things like "tally ho", or "jolly good show old chap".  Or at least break into a song and dance routine complete with jazz hands and spirit fingers.  But baby steps first.  Coordinating, two legs, a stick, a handbag and breathing is still troublesome at present. 

(It's grannified but it works)

I have used my stick as a light sabre, complete with sound effects.  And as an improvised guitar whilst listening to AC/DC.  It has also proven a great tool to poke cheeky children.

I did see a fantastic sword cane (think Crispin Glover's, The Thin Man in Charlies' Angels)  which I want very badly.  That way I can stab people who tell me it's greatI finally purchased a walking stick.  And muggers beware, this disabled, uncoordinated chick would take you out.  It's all very James Bond.  Maybe I can also get one of those bowler that cuts off peoples heads, like Oddjob's in Goldfinger.  Now there's an idea.  I think I'm finally starting to come round to this whole walking stick idea.

The dapper Michelle ;)

The Ministry of Silly Walks, Monty Python (1970)

Sunday 8 May 2011

Lady Melbourne, Westfield, and Shopping Extravaganzas.

Once upon a time I was fashion girl.  I loved shopping.  I loved looking for the perfect shirt, skirt or, my greatest love, shoes.  Unfortunately my Carrie Bradshaw taste was accompanied by the salary of an allied health worker in the public health system,with a husband, two kids and a mortgage. 

Still, I was undeterred by my meager finances.  I was bargain queen.  I could smell a 70% off sale a mile away and spot a red 'sale' sign at 100 paces.  I could mix and match with ease.  I would drive across 10 suburbs to get to a great op shop that was renowned for it's treasure of vintage pieces.  I always carried my wardrobe contents in my mental filofax.  I knew exactly where a particular piece of clothing or accessory would fit.  I could shop for hours and come home with only one piece, but it would be the perfect piece, that slotted in seamlessly with the rest of my wardrobe.  My own fashion version of Tetris.

I would frock up for work each day in a killer pair of heels, carefully selected vintage or classic inspired outfit with the perfect accessories. 

Then Bob came on the scene.

Slowly, bit by bit, my fashion sense went the way of my health.  Part of it was the exhaustion.  I simply didn't have the energy to do it.  It was a case of practicalities.  Ensuring adequate coverage for everything that needs to be covered in public became the number one priority, anything more was simply in the realm of fantasy.  Mind you that didn't stop me from going to work with my top on backwards, or forgetting to iron half my shirt.  If my hair was brushed I was pretty happy, as using a hair dryer was just too much effort.  Makeup went out the window except for a quickly applied bit of lippy.  I ended up with a wardrobe filled with slacks and shirts made from that hideous no-iron material. One less step to worry about in a world where energy was in short supply.

When I stopped working I gave up on fashion all together.  I slipped into a funk that if I'm honest, was quite comfortable.  There were small flashes where I would find a moment of care and put in some effort but they wee few and far between.  When your permanently exhausted it's hard to care.  With Bob my body shape also changed.  I really have no idea what size I am now, all I know is that most of my pre-sick clothes nolonger fit.  I don't really want to know more than that. 

Now I wear the uniform of the sick, PJs and old trackie dacks (see below).  Bugger brushing may hair, whip it up in a hair band and I'm set to face the world.  When you're stuck at home for the most part, why put in the effort?  I'm pretty sure my dogs are ambivalent to my permanent fashion faux pas.  My only concession to personal grooming these days is my bottle of Chanel No. 5 that sits by my bed.  A squirt every day to remind myself that once life was different.  
 (Abandon all hope ye who enter here.  
2yrs post leaving work.  Looking chic in pasty sick, 
with hideous dressing gown, unbrushed hair, dog chewed couch,
and large Thor sized accessory).
 (Mixing it up with old trackie dacks, which I still wear, 
and hair pulled back in a hair band, with small Freyja puppy accessory)
  (Ooh look, more pj's and another dog accessory, I have it going on.  
Note carefully crafted bed hair and pasty chic look)
 (And yet another pj, dressing gown and dog shot.  I am serious need on the fashion front.  
Good lord, even I can't believe my lack of style.)

Lately, I've been thinking that I need to put in some effort.  My eldest monkey boy is doing his deb with his best girlfriend and I really want to not look like the bride of Frankenstein's frumpier, pasty sister, when we do the mum and son dance.  PJs are simply not going to cut it.  Bob's not going anywhere and I really need to find my mojo again.  With his recent escalation I really need to put some serious effort into locating my elusive fashion sense once more.  (Though despite my stupor even I know that jeggings aren't pants, and that orange spray tan is only acceptable if you are an Oompa Loompa.  Maybe there is a remnant of my fashion sense left after all). 

Whether it's kismet or fate or whatever, but one of my favourite fashion bloggers, Lady Melbourne, (Phoebe was the inspiration for my Dorothy Shoes post last year) ran a competition for a $1,000 Westfield shopping spree with a stylist.  And,

I WON!!!!!!!!!!!!!

I know.  I can't believe it either.  I ran around (well stumbled around) the house yelling "I won", and doing a happy dance that may or may not have resembled the famous Elaine dance from Seinfeld.  I then took my laptop out to Mr Grumpy to ensure I wasn't delusional from lack of O2 or in the midst of a super brain fog.  But it's true I won.  My name was right there on the computer screen.  I have had emails from Lady Melbourne herself, and now have a pair of Westfield shopping centre gift cards in my hands.  No need to pinch me, it's not a dream.

Phoebe has been lovely, managing to squish me in on short notice before Monkey Boy's deb on the 14th so I will be all gussied up for the big night.

So this Wednesday, May 11th, which just so happens to be my birthday, I get to meet Phoebe, shop with a stylist and have the best birthday ever.  My gorgeous friend Kerri is coming along to help me out, carry bags or piggy back me at need.  I don't care how badly behaved Bob is on the day I am going to shop till I drop,  I don't care if I end the day being felt up by a pair of burly ambos or staggering like a drunken sailor and scaring small children and grey-haired grannies.  There will be fitting rooms, coat hangers, seams, hems, buttons, zippers and most importantly, fun.

And just think, with a stylist I will actually have a chance at avoiding the dreaded Mutton Dressed as Lamb Syndrome (at nearly 38 I am classed as high risk) or a bad case of What Was She Thinking Disorder.  Because lets face it $1000 on clothes can be spent wisely or very badly.  I think Princess Beatrice has taught us all a lesson in that money cannot be trusted to purchase style.

 (This must be avoided at all costs)

I will post photos of my new fashionable self after the big day and there will be no pjs or trackie dacks in sight!

The soon to be re-mojoed Michelle ;)

Friday 6 May 2011

A Word From Our Sponsor XV

With my heath in the proverbial toilet, posting has been a little slack of late.  I do apologise, but simply standing, especially when combined with the tricky act of breathing, has been challenging the last few weeks.

In.  Out. Stay upright.  In. Out.  Stop swaying.  In. Out.  Grab wall.  In.  In. In. Oh shit........

Fun times.

It appears that Bob was feeling a little ignored and he decided to throw a tantrum to get my attention.  It's worked.  All that screaming, foot stamping and dish throwing has been a little hard to ignore.  If only I could lose myself in a tasty bottle of mummies little helper, but alas that is off the cards at the moment.  I am already doing a fair impression of a slurring, staggering drunk, one little sip and I'll be on my ear, or singing Ke$ha songs.

I've been trying to catch up on some of that pesky blog administrative stuff that I always put off.  I've finally gotten around to writing an About page and added a Contact page.  Please let me know what you think.  If it makes sense.  If I look like a loon.  Or have created a grammar and spelling abomination that would make a unicorn cry.

Still working on updating my Dysautonomia Blogs list so if anyone has a blog about Dysautonomia and wants me to add it in please leave your link in the comments. 

In honour of Mother's Day I have re-edited an old post I did for 12 More Pages back in 2009, on combining motherhood and chronic illness.  It's easy to feel guilty as a mum for all the things we can't do for our children but it's time we gave ourselves a break and realise what's important.

Hope you all have a fantastic Mother's day.

Michelle :)

I've been singing this a lot lately.  I'm thinking it would make a good Dear John song for Bob.

Basement Jaxx feat Lisa Kekaula, Good Luck, (2003)

Basement Jaxx - Good Luck on MUZU.