Thursday 3 October 2013

Amity: Art from the heart. Dysautonomia Awareness Week.

Our second guest poster is the lovely Amity, who hails from our most southern state here in Australia. She is a talented artist and shared this piece of her work, which I must admit touched me as soon as I saw it. Her story behind the piece really sealed it for me and I'm sure it will for you too.

Amity: I'm 43 years of age, live on an Island off Tasmania with my husband, child and little dog. Worked in Early Childhood and Hospitality. Serious, housebound illness began in 2010 after a lifetime of gradually increasing symptoms ... invisible to everyone but me. I am now diagnosed with ME/CFS and Lyme with POTS forming probably the most debilitating component of my illness. Illness does provide some gifts though and being able to revisit my artistic side has been a special one for me. 

In Tassy they have, at times, these thick low lying sea mists that hang across certain waterways- the Bridgewater Jerry being one of the best known. When I caught the flu in 2010 it coincided with the rheumatologists appointment that I had waited months for. I hoped this person would finally be able to tell me after 20 + years of searching what was wrong with me. She listened to my history, asked a couple of questions and told me I had Fibromyalgia. She handed me a copy of an article from a medical journal (so easy to read and understand when you haven't ever studied medicine .....) and sent me on my way. No follow up appointment just a "this is what you have - good bye" 

My body was in such a state of struggle by this point after almost 40 years of increasing illness that the exhaustion, pain, nausea and brain fog made it impossible for me to research or construct some way out of this thing I was in. I felt like I was lying in the foetal position in the bottom of a little dinghy and had been pushed way out into the middle of the Bridgewater Jerry without any oars. Just me all alone, bobbing in a universe of fog so heavy and thick you couldn't even see the end of your nose. 

That was October. By the following Easter I was still ill, was having more and more dizzy spells, felt like I had a continuous extreme hangover, a bowling ball for a head, could no longer drive, had been forced to take leave from my job, found walking to my letterbox nigh impossible BUT ... I was starting to accept that the more I struggled against this 'thing' the tighter it seemed to hold me. I was like a fly in a spiders web. I realised I needed to stop, sink back into my pillow and just rest on my oars. I wasn't giving up... I was just waiting for my strength to return so that I could once again continue on my way.



For those unfamiliar, a short explanation of Dysautonomia can be found here.

One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.

Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.

Don't forget to check out the awesome post by yesterday's guest, Claire here.

The cheeky part of me couldn't go past the Split Enz classic "Six Months in a Leaky Boat" for the musical accompaniment today. Though it feels more like six years in a leaky boat. (I swear this is not turning into a Neil Finn fest, the man has just been so prolific and brilliant over the years.)


  1. I love this more than words can say. Amity, you're a superstar. And Michelle, there's nothing wrong with a Neil Finn-fest. He's one of the greatest songwriters in the world.

  2. Great post, hanks for sharing your story Amity (and Michelle)


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