Enjoying the moments when they come: Ella Hooper "The Red Shoes"

(My Dorothy's waiting for me as I went into my last brain and spine MRI.
Photo via Melt Images)

To say the last few months have sucked healthwise may be an understatement. I'm in Over It mode at the moment. I have a stack of referrals to organise and bloods to get done. But instead the paperwork is sitting under a pile of worn-once-but-not-so-pongy-that-they-can't-be-worn-again clothes, a heat pack, and brain-shaped squeezy ball. Get another needle stuck in my vein or binge watch Season 3 of The Walking Dead? It's not a hard decision. Add in that I am on day nine of a headache that has really only differed in intensity from clutching my head and sobbing and sitting on the couch breathing through the pain, and well it's been a funfest of epic proportions. So when friend and fellow patient, Belinda, sent me a tweet mentioning red shoes and Australian musician Ella Hooper I was a tad intrigued.

Regular readers know my love of red shoes. I made my own pair to say "Screw You!" to illness. They are on my header and business card. I indulge my fetish for red shoes at every opportunity, though sadly my quest for red boots continues. And I am wearing my Dorothy's to every medical appointment for a year to raise awareness and funds for Dysautonomia here in Australia. Friend and fellow patient, Kate, even made me a red superhero cape complete with a sparkly Dorothy shoe on the back. I may have a bit of a red shoe problem. But it's a good problem, as problems go. So no intervention required.

I have followed Ella Hooper since the mid 90's when I first sat in my car listening to her and her brother Jesse's band, Killing Heidi, on Triple J Unearthed. Hailing from the small Victorian town, Violet Town, it was easy to relate to Ella, as a fellow Victorian, rock loving, country girl. Killing Heidi's, Reflector took off, and both Weir and Mascara became regular features on Australian radio, and our loungeroom. Weir may have ended up as one of those songs where my boys were known to plead, "Really? Not again, Mum." But hey, as a Mum, you get to tell your kids to suck it up until they reach the age where they finally realise that your music choices are actually quite fabulous. (Many music battles have been fought over the years. The battle over Jeff Buckley's version of Hallelujah was particularly hard fought. Whether I crushed their child brains into submission by repeated exposure, or they simply became old enough to realise the magnificence of the song, I don't know. But I do feel it is a sign of parenting done right.) Having watched Ella more recently on Spicks and Specks, and various Rockwiz episodes (love this duet with Dan Sultan), I also suspect she'd be a great chick with which to have a glass of something fermented, or a coffee. And that my friends, is an important factor in music selection.

But I digress. 

Ella put out a call to her fans to send in pictures of their red shoes to be added to the lyric video for her new single aptly titled, *The Red Shoes. Being a top chick and fellow lover of the red shoe, Belinda kindly pointed this out, and I of course sent in a picture of my Dorothy's. And lo and behold, there they are in Ella's video!

The song is cracking and if I could dance without falling over and face-planting amongst my rapidly reproducing dust bunnies, I would. Red shoes aside, she had me at the first burst of guitars and I was sold after the first couple of lines.

I woke up with courage

What else is there to do?

My love don't worry.

I'll put on my red shoes

Perfection on so many levels.

After much in the way of shitty health and general ennui of late, it's one of those little moments in life that make you sit up and smile. It's kismet, baby.

Mr Grumpy had agreed that we could drive to Melbourne to see her perform for the single launch but unfortunately the venue is down a set of stairs in a basement. And as much as I am keen for adventure, zooming down a set of stairs in a wheelchair, whilst fodder for Funniest Home Videos, may not be the best option. After much lamenting of my bodgy weak legs and declaring a pox on both their houses, Mr Grumpy has mentioned that he'd be happy to piggy back me down the stairs so I can go. So there may be hope yet. Will keep you updated.

But in the meantime enjoy the explosion of red shoe magic and cracking tune. Turn it up, dance, and remember to embrace those moments when they come.

Michelle :)

*The Red Shoes is the third single from Ella's upcoming debut solo album Tongues.

Ooo look mine and my red shoe sista, Belinda's shoes. 

And a subliminal flash of Dysautonomia.Woo Hoo!

It really is the little things.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

This week I rocked because..... Episode 8

Okay so it's been a while. Life, illness, and the like all got in the way of maintaining a regular segment on the blog. But I feel like now really is the time to bring it back. With my health still swirling around the drain and the current political discourse in our country, it is easy to feel overwhelmed with a wave of ennui, or frustrated, murderous rage, that is thwarted by your body of patheticness (used to be just 'arms of patheticness' but as it's spread I think the use of 'body' is far more apt).

Regular blog readers or FB followers will know that my health is, well...really there are no nice words to describe it of late. The fact that Mr Grumpy forced me (literally drove me into the carpark to make the appointment not telling me what he had planned) to go try out a powered wheelchair, suggest he may have seen through my carefully concealed decline. So it is time to focus on some of the small victories that have been swamped by the blargh.

Despite the decrptitude, I have had some highlights where I pulled a rock star performance from my nether regions to shine for an hour or three.

This week I rocked because....

• I baked bread from scratch. Spelt, walnut and oat. Yum. Sure there was payback, but the smell of that loaf baking in the oven was worth every minute of ugh.
• I managed a 2 blog posts. When I've had days doing more mouth breathing than conscious though this past week, that's worthy of excitement.
• I tidied my bedside table. All my pills are in their boxes. The empty packets in the bin. The 78 hair bands back in the bathroom draw. Even my puke bag is neatly compacted on the table. 
• I have managed my lawn laps 3 days in a row. Admittedly there were stops. Half way through I may have thought I was a crazy woman for trying to make my limbs move whilst swallowing down mini-voms. But I did it. 
• I have made myself go out and look at the sunset. To just appreciate the beauty of the sky. Looking up is kinda nice. 

So tell me, how have you rocked this week?

• Feel free to share with anyone else who you think may benefit from recognising and celebrating, just how much they've rocked this past week.

Cheers
Michelle :)

Sing it Pharrell!

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Looking up in suburbia

Easter didn't quite go to plan. Saturday I pushed. As a result, Easter Sunday was spent trying to differentiate between passing out and sleeping. I slept though most of our family phone call to our eldest who was having his first Easter away from home. I was at least there on the couch slurring some words in the general direction of the phone. And today I woke up with tired on top of my tired. And my stomach in rebellion. Oh and did I mention a bladder that has shrunk to the size of an M&M? Drink. Pee. Drink. Pee. Drink.... Dysautonomia, the gift that keeps on giving.

The weather has been grey and my mood matched. But today there was sun. So I dragged my protesting body outside to take in it's warmth and cleanse my spirit.

The garden has always been my bliss. But since the move that has taken a dive. The move from temperate rainforest to sterile suburbia has been a hard change to wrap my head around.

This was my world before our move.

Now it is this.

And serenity is hard to find.

But today I was determined to find a small piece of bliss.

I decided to look up....

....and found my back neighbour's flowering gums.

 And blue sky.

And the gums reached out. Filled with squawking honey-eaters and bright red blooms.

 I put up my red umbrella. And laid out my blankets and pillows.

And I watched the clouds.

I had company in the sun.

And snuggles when it became too warm.

There were Great Dane footrests when my head started to spin.

And company whilst I searched for new books to read.

Now as the sun goes down I am just as exhausted, but happy. Sometimes you are stuck in soulless suburbia and sometimes....

....it is where you set your gaze that matters. 

Michelle

Don't forget to head on over here and donate to Dysautonomia Research here in Australia, at The Baker IDI. Lots of exciting research occurring currently and more projects on the way.

You could also head on over to the Australia Writers' Centre and vote for the blog in the Best Australia Blogs Competition.

 

How many red shoes is too many red shoes? (AKA I may need a red shoe intervention.)

Hello my lovelies.

Longterm readers of the blog will know of my love of the colour red (my old loungeroom, my kitchen appliances, my dog's bed, my garden chairs, pots for plants, cushions, the list goes on, Mr Grumpy even feeds my addiction recently buying me a huge red umbrella for the back yard. Even the camera that took the photos for this post is red and has a red case.). They will also know of my love of glittery, impractical red heels. They may not know of the number of red shoes I now possess.

Having moved recently I have been forced to confront my addiction. Or, as I like to think of it, my beautiful red distraction from illness. I have still to find some pairs.

There is nothing more cheery in life than a pair of red shoes. From my Dorothy heels, to my slippers and even my gardening shoes and gumboots, my feet are frequently enclosed in red goodness.

Many I have had for well over 10 years. Purchased with glee back when I was still able to work. And from as far afield as Singapore, on my last overseas trip prior to that pesky illness thing. Yet others have been an impulse buy on a bad day when only a pair of red, polka dot, bow-topped flats could make the world a better place.

I still look longingly at red shoes. Online, or face pressed hard against the window of shoe stores who's pretty, happy offerings are beyond my meagre finances. Oh sweet red leather, faux leather, fabric, sequinned, glittered beauties. How I wish I could take you home.

 Backward or forward, they are a perfect line of loveliness.

Who needs a basket of puppies when you can have a basket of red shoes? 

This is my basket of happiness.

Maybe just one more pair. I can stop any time I want. Really I can. There's that pair of red faux-suede knee high boots that would be perfect for Winter. Or, that pair of patent, red Doc Martins I spotted the other day. Or, the pair of red glittery runners. Or......

Am I alone in my red shoe fetish? Can anyone top my addiction? Or tell me that I really need those knee high boots for my mental health.

Michelle :)

Don't forget to head on over and donate to my Clicking my heels for Dysautonomia, fundraising for Dysautonomia Research at The Baker IDI here in Melbourne. (Information about the ongoing droxidopa aka L-DOPS, trial including how to volunteer, can be found here.)

Click here to donate.

Put on your red shoes and dance the blues!

Happy songs for less than happy days.

The last few months have been pretty big on the bleech side of the ledger. I could bore you all stupid (and myself if I'm honest) whilst I list off all my woe-is-mes. But really that wont change the majority of them. My other option is to pick myself up. Dust myself off.  And at least attempt to find my happy place. I've found it in the past and I know I'll find it again. But sometimes you have to do the hard yards before you get there.

As part of that journey I have been using music. Lots of different types of music, for all sorts of genres. But I decided to push a bit more and be a bit more direct for my dull brain and find Happy songs ie Happy or some version of the word in the title. So here's a bit of a list of my latest listenings, plus a few suggestions from my trusty friends on Facebook.

So if you're feeling a little down play a few and sing along. Play them loud, dance away, tap your fingers or your toes. Break out some fabulous spirit fingers or dance in your mind. What ever takes your fancy.

And hopefully they can bring a little joy.

Personally Judy and C2C tend to be my play it loud and sing along songs of choice, but there's a little something for everyone.

1. Pharrell Williams, Happy (2013)
 

2. Goldfrapp, Happiness (2009)
 

3. C2C, featuring D. Martin, Happy (2012)

4. Judy Garland, Get Happy (1950)
 

 5. REM, Shiny Happy People (1991)
 

6. Boney M., Happy Song (1984)
 

7. Kermit the Frog, Happy Feet 
 

8. Bobby Ferrin, Don't Worry Be Happy (1988)

9. Otis Redding,The Happy Song (1968)

Feel free to add any others in the comments.

Cheers
Michelle :)

The Dorothy Shoe Project

Since my last post I've had a lot of time to think about what I want to do this year. Making sweeping statements about stepping back from a focus on illness to find a balance in my life are all well and good. But what exactly does that look like and what does it mean for the year ahead? This is exactly what I was contemplating at 3am the other night. Good old insomnia gives you a lot of thinking time. Not that all the thoughts are coherent, and many may involve elaborate plans of how to dispose of Bob's body should I ever manage to take him out, and perhaps others were about hot shirtless movie stars and back rubs. However, every now and then, you have an epiphany.

When I think back about the past 6yrs the one thing that has been in short supply is happiness. Let's face it, when you are dealing with a chronic illness day in and day out, frequently just praying you can make it from the couch to the loo without a face plant, happiness is your last thought. And I'm not alone. I read the forums, the comments here on the blog, and the private emails and messages I receive, and it is clear that happiness and joy have taken a back seat to medications, doctors and compression hose for many. We are consumed by the practicalities of illness and that leaves little time to plan, or even look for, joy.

When was the last time you were silly just because you could be? When did you last say "stuff it", I don't care what anyone else thinks? When you just let go? When you laughed? A real, true, snort and tears laugh? When was the last time you were truly happy?

Sadly, for many it is clear that they would be hard pressed to answer any of these questions.

Well I say bollocks to that! We deserve to have joy. We are worth it.

So in the wee hours of Thursday morning I made a decision. This next year I am dedicating to bringing a little joy to those with Dysautonomia all around the world.

How, you may ask, am I going to do that? Well one quick look at my header should give you a clue. Dorothy Shoes. Yes, I am going to use a pair of those impractical, sparkly shoes of magic to bring joy all around the world. I don't know why I didn't think of it earlier . My tutorial on making my shoes is still one of most popular. When I offered up a pair for my 2nd blog birthday I was overwhelmed with entries. For some reason that sky high pair of red glittery shoes bring happiness to many people, and that magic needs to be shared.

So I am announcing the creation of :

The Dorothy Shoe Project©

Currently I'm looking for expressions of interest from people living with Dysautonomia world wide to become involved in The Dorothy Shoe Project. The aim of the project is to bring some joy and levity to the lives of those with Dysautonomia, whilst also raising awareness.

A pair of Dorothy Shoes will be sent to various countries including the UK and other European states, USA, Canada, Australia and NZ. Participants spend a day being creative with the shoes, taking photos and/or a short video. A diary to record your experiences and any details you want to share will also be included. After which the shoes will be sent to the next person. Photos will then be sent to a central web page and the shoes tracked at their various locations around the world. You can wear them on your feet or on your head, in a wheelchair or at the hospital, riding an elephant or a unicycle, the only limit is your imagination.

For more information see the following video.

• All expressions of interest should be sent via email to Rusty.Hoe@thedorothyshoeproject.com  NOT in the comments at the bottom of the page.
• I am collecting numbers over the next 2 weeks to gauge interest and prepare for the logistical side of the project. 
• Apart from your Country and Name you don't need to send any additional information at present. 
• Once numbers are collected, more information will be sent out via email.
• I have purchased a domain http://thedorothyshoeproject.com/ for the project which is currently being developed.
• I'll put updates here on the blog, twitter #thedorothyshoeproject, FB, and once it is up and running, on the website.

FAQ

Q. Does it matter what type of Dysautonomia I have?

A. No any type. It doesn't matter if you have POTS, OI, NCS, PAF, MSA, or any other form. As long as you have a diagnosis that falls under the banner of Dysautonomia you are welcome to participate.

Q. Does it matter what sized foot I have?

A. No. The shoes will be made in a large size to accommodate as many people as possible. If you have tiny feet think of it as playing dress ups like when you were a child. If you have large fit they may fit perfectly. The shoes represent a fantasy. They represent magic and fun. 

Q. I am in a wheelchair, can I still participate?

A. Yes. It doesn't matter if you are in a chair, use a walker, a cane, or are currently bed bound. The only limit is you imagination. You can wear them on your feet, or on your head. You can wear them getting your saline IV, at the gym, in a waiting room, on a unicycle, or whilst riding an elephant. Creativity is key. What is important is being silly and impractical. To embrace the pure joy of silliness. To suspend reality and just live for a little while.

Q. I am a guy, can I participate?

A. Yes. If I get expressions of interest from men I will source a pair of Blundstone boots (workmans' boots) and glitter them up. Or you are welcome to wear the heels. It's all fantasy. As I said above the only limit is your imagination.

Q. What about my privacy if I give up my address?

A. Addresses will be known by 3 people. Myself as coordinator. The person that sends you the shoes. And, the person you send the shoes onto. Photos will be identified by city, state and country and participants by first name only.

Q. What about raising awareness?

A. Part of the project is about raising awareness for Dysautonomia, although joy is the main aim. It can be as simple as using the shoes as a conversation starter. Lets face it, if you are riding the reclining bike whilst wearing a pair of bright red heels someone is going to ask you why. Or you can contact various media outlets to alert them to the project and why you are participating. Information for press releases and the like will be provided on the website once things are up and running.

Q. What about sponsorship?

A. Sponsorship would definitely make it easier for the project to go forward, as there will be costs involved. If you know of a company who may be interested in sponsoring the project please give them the contact details. 

So what are you waiting for? Sign up to participate. Spread the word. The more participants the better.

Lets bring some happiness back to all our lives.

Update: Thanks everyone for the amazing response. Have participants signed up from Australia, New Zealand, Ireland, England, USA and Canada. Keep those emails coming in. Keep spreading the news. Tweet, Blog, FB, yell it over a fence. Lets bring joy to as many people with Dysautonomia involved as possible. 

Update 2: Well after a busy 3 days, 80+ participants and 7 Countries involved, with the addition of a participant from Israel overnight. An amazing response, and a huge thank you to everyone who is making this possible.

Cheers

Michelle :)

The View From My Couch: Heels of Happiness

 

At first glance this picture doesn't scream happiness or beauty.  My legs and feet could easily play the part of Jane Doe No.1 on CSI, with their sexy shades of deathly, bloated purple.  But for me it's beautiful. For me it is a reminder that every now and then I can be normal(ish).  Every now and then, I can give Bob the middle finger, and live life on my terms, if only for a few hours.

I recently went to a family wedding.  Those who read my ramblings on Facebook will be aware of my determination to wear heels to the wedding.  It's been four long years since I have been able to wear heels.  When you have Bob standing is not your friend.  Your balance is non-existent.  Even the tiniest heels are akin to walking on stilts. So really, on reflection, deciding to wear heels may not have been the sharpest choice I have made in life.

I practiced for days around my house.  Heels with my pjs.  Heels with my shorts.  Heels when I was sitting down or lying on the floor.  I watched my bloated purple feet squeeze out through the holes in the shoes as I did the elegant zombie shuffle whilst furniture surfing around the house.  I decided that regardless of the risk of snapping an ankle or flashing the bridal party with my undies when I inevitably went arse up, I was wearing heels.  (Thank you to all, including the bride to be, who suggested I wear my best undies, just in case.  Rest assured I grabbed out my 'special occasion' undies just for the day).  Over the next few days I improved from 'unco zombie' to 'drunken celebrity It girl walking down imaginary steps'.   I was proud.

Despite a pulse pressure that dropped down to single digits, days in bed, and visitors, I managed to gussy myself up and put on those heels and head to the wedding.  I managed to find enough chairs and luckily have a husband for whom holding me up is second nature, so I didn't flash my undies to anyone.   I walked/shuffled around the event, with no one else any the wiser to my weirdness.  I may have paid for it big time for the following few days and may not wear heels again for another four years, but I was normal for a few hours and that is precious.  Those mottled, bloated and aching legs and feet, squished into that sexy pair of heels are beautiful to me. 

Cheers
Michelle :)

Fabulous Friday: I See Red, I See Red, I See Red.

Don't panic people I'm not having anger management issues.  Well not as long as the microwave and I agree to remain in separate rooms for the foreseeable future.  It's in reference to an old Split Enz song.  Today's Fabulous Friday I am celebrating all things red in my life.

I've discovered I have a thing for red (in case you didn't pick that up from my sparkly pairs of Dorothy's).  I mean I knew I liked red, but then I started taking photos of my happy things (thanks for the inspiration lovely Em of I'm Confused fame).  And suddenly it was Redapalooza.  Photo one red.  Photo two red.  Photo three red.  Even I could notice that trend.

There is a chance I may have an unhealthy red facination.  I'll let you decide.

The walls of my lounge are a deep red.  I love the contrast of my old sliding doors with their frosted glass butterfly's.  I was told I was nuts for wanting to paint my walls red, but I love it.  So warm and inviting. Especially when contrasted against the bright green tree ferns outside out large windows.

I reclaimed this garden chair off the side of the road.  It was broken, covered in muck and painted in a sad shade of yellow.  I grabbed a stiff brush and a can of geranium red and hey presto, my morning coffee chair was born. It is surrounded by lavender and naked ladies (flowers).  A little slice of brightness every day of the week.

The pots on my front step are various shades of red.  Either thanks to that trusty can of red geranium paint, or simply that's how they came, ie my old olive oil cans which are a work of art unto themselves.

May favourite eye pillow.  It lives in my freezer ready to pop on my eyes when a migraine hits.  Also works well for TMJ pain after a dentist visit.  Tip for the day don't store near your frozen bananas, makes for a wiffy eye pillow.

Coffee tastes better out of a red machine, and this little machine has made many many double espressos.

This may be my favourite present of all time (though its a toss up between this and my 90cm Smeg oven).  I realised a lot of my kitchen gadgetry is red.  From my enamelled cast iron pot to the huge red glass jar I keep my rice in.  Red, red and more red.

If I have to have salt, this is where I want to get it from.  Stupidly expensive for what it is, I will always love my mini tagine salt and pepper doverlacky.

I found this painting in an antique store, in Olinda, that no longer exists.  I loved the painting, the colours and the frame.  It's also a bit beaten up, like me, which makes me love it even more.

Brought at an OPJ (Other People's Junk) market many a year ago this little specimen vase is still dear to my heart.

Another market find (Kallista Markets).  One of my favourite fall back jewellery pieces.

Ahh the shoes of gorgeousness.  How could I do a post about my addiction to red without a few shots of my glittery babies.

So much glitter left over, what can a girl do?  Make a broach, that's what.  So pretty and glittery.

Okay, okay.  A glittery red pear may be a tad weird but hey, I was bored.
I was going to do an apple but a pear is far more in keeping with my body shape.

Okay so maybe an intervention is required, especially with regard to the pear.  I obviously need to get out more.  But who can deny that red and a little glitter makes the whole day brighter?

Cheers
The red obsessed Michelle :)