Tuesday 31 January 2012

Hey Universe, can I have an epiphany without all the stress? Thanks.

The last 24 hrs have been a wee bit stressful. For those who didn't read my panicked posts on FB and Twitter yesterday (be grateful you were spared my meltdown), I went to open the blog yesterday, only to be faced with a bright red screen screaming "DANGER, WILL ROBINSON. DANGER" *insert appropriate robot arm actions*.



"Do not proceed"

"Turn away"

"Don't open the door"

"Abandon all hope, ye who enter here"


These are not the words to brighten a blogger's day. Especially a blogger who has the technical knowledge of a rock. Or a blogger whose reserves are a bit like that little bit of sauce in the bottom of the bottle that wont come out now matter how much you bash it on the table, or swear and threaten the bottle. This may lead to a blogger posting babbling cries for help on FB or Twitter. Or sending panicked texts to her husband who is in another town for work. Luckily, said blogger's husband is very understanding. And whilst he was no doubt rolling his eyes and shaking his head and wondering why he volunteered to marry a crazy woman, he was kind enough not to say so. Thankfully, Mr Grumpy was able to fix the problem, which may have led me to promise him certain 'things' in my mindless relief. Luckily, I always have the brain fog defence. I said what? I don't remember that.

Now that the swearing, rocking in corners and crying into my cornflakes has stopped, I can look back on the past 24 hours with a wee bit more clarity.

Above everything, what yesterday taught me is that I really love this blog.

The thought of it being attacked, losing it forever, or infecting those I care about, was overwhelming. I'll admit these feelings took me by surprise. I want to be glib and light and laugh it off, but the reality is that this blog has become an important part of my life. It is a history of not just my dealings (or in many cases not dealings) with Bob. It is a history of me. A tangible record of the good and the bad. It's a reality check and also a story of how far I have come. It reminds me that I do have strength, even when I think I don't. And that tomorrow really does hold hope.

It is the development of community and friendship. Of finding I wasn't alone. That there were others across the world who felt as I did. Others that understood the dark times and who could also laugh, and in turn make me laugh, at the absurdity of our united experience. It is a lifeline for me and, as all the lovely comments of support from yesterday atest, a lifeline for others. A breaking of borders and isolation that would never have occurred without those first clumsy steps into social media.

It reminds me that everyone can find purpose and connection, even when it seems your health threatens to take it all away. That meaning can be found in the most unexpected places. And you can make a difference not just in your own life, but that of others.

It is my baby, my sanity, and my family.

And I am thankful for the voice it allows me to have and the people it has brought into my life.

Michelle :)

Wow, after all that sentimentality I feel the need for some cleansing corny 80's music.

Saturday 21 January 2012

Thwack! Swoosh! Kapow!

Damn I hate that. You're going along happily. Not feeling great, but not feeling too bad either. Then....
Down for the count. Fickle bastard that Bob is, he decided yesterday was the day to really stick the boot in. It's not particularly hot today, despite being Summer here in Australia. I haven't been out and about. I haven't even attempted to dispel the dust bunnies procreating throughout my house. Yet here I am knackered again.

The only thing I can think of as even a slight possibility, is that I pulled out my huge 500gm weights in a fit of pique and dared to lift them above my head for a nanosecond. Technically I'm still banned from exercise until I can gain some of my weight back. But as that hasn't happened since my big loss in August, I put on my stubborn, "Screw you Bob" hat, and busted out my imaginary leotard. Sadly, it appears that this is not the most helpful strategy for dealing with a chronic and spiteful disorder. Perhaps I should listen to my physio and my doctors. Perhaps Mr Grumpy is justified in calling me a 'dumbarse'. Perhaps. Or perhaps Mr Grumpy will wake up with one less eyebrow tomorrow morning. You just never know.

I've also had increasing pain in my left leg and a rather sexy limp. According to my GP who berated me, and gave me the "I'm so disappointed" look, you should see a medical professional when this happens. Who knew? Not stubborn me. How do you pick which pain is important when you are in pain every day? So now it's scans, scans and more scans. Monday I get a dose of radiation and a full day of scanning. Can't wait. I'm wondering if I should break out my cape just in case I develop any super powers on the day.

So I'll sit/lie/flop on the couch and resist the temptation to lift my head, which apparently is a great way to make the world turn a various shades of grey. I may even sit and stare at the computer screen, fingers flopped on the keyboard for 10 minutes trying to form a sentence. Lights are on but nobody's home. Well except for Bob. And his friends, nausea, weakness, headache, tachycardia, chest pain.........

Bugger it. I might just get my minions to ply me with chocolate (if you're going to feel sick no matter what you eat you might as well have something yum), scoff some pain meds and watch mindless TV. 

Michelle :)

PS. Still getting through the emails for The Dorothy Shoe Project. It's been one of those weeks, so I am rather behind. I do apologise and will get onto them soon. I've had few questions pop up. So just to clarify. 
  • ALL the shoes will start the journey here in Melbourne, Australia and be posted out around the world to various countries. 
  • A diary will be accompanying each pair of shoes so everyone can write about their individual day.
  • When the shoes have finished their various travels, they'll all come back to Australia with their corresponding diaries. 
  • Diaries will be scanned and put on the website.
  • The plan is to then auction off each pair of shoes to raise funds for Dysautonomia research. 
I think that covers the main questions, though as my brain has officially left the building today I may have missed some. 

One of my favourites, the wonderful Etta James passed away today so I think it's only appropriate to celebrate her in my musical interlude. Although, At Last is perhaps the song she is best known for, this is my favourite.

Tuesday 10 January 2012

Update and Thank You: The Dorothy Shoe Project

WOW. That's the only word that comes to mind when I look at my email Inbox. When I first envisioned The Dorothy Shoe Project in the wee hours of Thursday morning I could never have imagined the level of response that has come in over the past few days.

I'm really touched by all the amazing emails I have received. 

For those who have shared their stories, thank you for your trust. So much heartache and sadness, but also a resilience and strength that I hope you can recognise and be proud of. I hope participation in the project can bring some happiness and joy your way.

For those who have shared your photo plans, thank you for making me laugh and bringing a smile to my face. I'm loving all the ideas and can't wait to see them come to fruition.

For those who have shared the project with others through FB, Twitter, personal blogs, web pages, or local support groups, thank you. Seeing the Dysautonomia community come together to share the joy is truly inspiring.

For those who have offered their help and support, thank you. Your aid will make this project possible.

As I write, I have emails from approximately 100 people, from 8 different countries, interested in participating. An amazing response by any stretch of the imagination. Remember to share the project with any Dysautonomia patients you think may want to participate.

It has become apparent that the project will require a bit more than just me in my pjs organising things from my couch, so any suggestions for any businesses/organisations that may want to support the project are welcome. I am in the process of nutting out just what will be required to facilitate the project, and will hopefully have a plan organised soon.

At this stage just send your name and country to rustyhoe@thedorothyshoeproject.com so I can get an idea of numbers for planning. I am hoping to reply to everyone as soon as possible but may have to employ Thor as my PA and teach Freyja to make coffee (thanks for the idea Jane) given the current level of response. Now if only Great Danes had opposable thumbs. After a number of requests I have also added a snail mail address to the Contacts at the top of blog.

Full details of the project, and how to participate can be found HERE.

Claire over at Walking for Wisdom has written a great post Raising Awareness and bringing joy with a pair of sparkly, red shoes, about the project. While you're there check out her amazing and inspiring trip across the Camino Frances, 800km from St Jean Pied de Port in France to Santiago de Compostela in Spain.

Kristina over at Defying Gravity has also written a great post The Dorothy Shoe Project, love the song at the end. Thanks for spreading the word Kristina :)

If anyone else blogs about the project, please let me know so I can link you up.

Once again a huge Thank You to everyone.

Michelle :)

And a little Florence and The Machine for a bit of crazy, creative inspiration.

Friday 6 January 2012

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.

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.

Michelle :)