Come on in, pull up a bed and grab a cup of tea; I'm Charlie from Australia and I have some tales to tell you. I am a yogi, a sci-fi nerd, a traveller, a gamer and a thift-shopper. I have also felt chronically crappy every single day since 2014. Crappy for me is like...imagine … Continue reading Hello!
As a disabled woman, I usually struggle to participate in the wonderfully boastful ritual of annual achievements, but this year I've said fuck it, I'm going to celebrate all of the ways in which I've turned my back on the goals, and kicked the football into the bonnet of the car parked on the boundary and set off it's alarm. I'm going to celebrate breaking my diet, being unreliable at work and allowing my disability to define me.
"Maybe you are doing too much", "but all of my other patients are doing well" and "if only you lost weight, you'd feel better," are classic examples of unhelp for the unwell. These unhelpful strategies caused me a storm of distress and wasted my precious time. Find out how I eventually found doctors who were helpful (hint: it involved a bin).
This path is often long, frustrating and lonely. You need to be prepared to become an expert in the topic, to sack doctors who are unwilling to get on board, to network with anyone who knows anything about cortisol pumping, to reach out to strangers and ask for their help, to ask a second or third time, to argue your case, to jump through bureaucratic hoops and to address many objections which will be placed in your path.
The Classic Fairy-Tale of the Magic Pills Once upon a time there was a healthy young women who liked to help others and dance. One day she noticed that she was getting tired very easily, was sleeping all of the time and her skin had turned bronze. Everyone thought that she looked very healthy. "What … Continue reading Rewriting the Fairy-Tale of Addison’s and the Magic Pill
Last week I was involved in the Melbourne Fringe Festival event the Disability Pride is Back Mural in Footscray. Over 50 people with disabilities contributed and pasted-up artwork (drawings, prints, poetry, images) to create a huge street-mural celebrating disability pride and culture. I'm sure that my involvement in this event has left some of my … Continue reading Disabled is Not a Dirty Word!
As a frequent traveller to SickCity, I've compiled a list of my top 7 most useful phrases for communicating effectively with the locals (known as "medical professionals" or colloquially as "doctors" or "nurses"). To become a confident med-speaker, I recommend role-playing these phrases with a friend or in front of a mirror. 1. I refuse … Continue reading 7 Useful Phrases for Travellers to SickCity
After ten years of seeking answers for fluctuating energy levels, my twin diagnoses of Hashimoto's and Addison's Diseases arrived a couple of weeks apart. Addison's was delivered in the emergency department at around midnight on 14th June 2014 by the simple act of reading 2 numbers. For several hours, I'd been harassing any nurse who … Continue reading The Emergency Delivery of Addison Disease
If asked to take the cocktail-party challenge and explain Addison's Disease in a single entertaining sentence, I would say "my adrenal glands were damaged during a knife-fight with Mr Addison." [Insert pause for laughter]. I'd then proceed to say "yep, I'd never heard of Addison's Disease before diagnosis either. This is the disease that gave … Continue reading What is Addison’s Disease: Explanations to Entertain, Educate and Impress a Crowd
Becoming chronically crappy was a life-shattering event: life was splintered into a thousand little pieces that were impossible to reassemble back into the same pattern. No part of my life has been untouched by the experience and no part is now the same. Sometimes I feel as though my new life is lived in an … Continue reading Who Moved my Speedboat? Life with Chronic Crappiness