I feel these chasms often and don’t feel like they are talked about much. The chasm of disability vs chronic illness. The chasm of always having had support vs never having had support. The chasm of a condition that can be supported vs one that can’t. The chasm of a researched condition vs an […]
This is my life
My 2023 submission to the long covid inquiry
I’m planning to document and collate more of my advocacy on this site. Mostly so that others can use my words as a template to save them energy (though my words are never perfect nor are they the only words you can use). I’ll collect the links on one page eventually but for now they’ll […]
You need to not suck
This is a very real accomodation need. There’s an unrelenting frustration when other people slack off and make us (chronically ill people, especially people with energy limiting conditions) repeat work. When the government loses paperwork and you have to repeat it. When a colleague gets something wrong and you have to fix it. […]
Targeted Foundational Supports Advocacy
I recently became concerned about plans for Targeted Foundational Supports. This is not a new concern (I’ve outlined things in the past), just a more specific one. This concern was mainly raised through the application form for this focus group, because I read this as implying that Targeted Foundational Supports may be ONLY Thriving […]
Wannabe Mode
Wishful thinking mode? Desperation mode? Or wannabe mode? At the height of the blogging era I remember wannabe mode as people who were DESPERATE to get a link on a famous site. A single link. That link would launch them into becoming the next big thing and all their problems would be over forever. […]
Money is a support
A note I sent myself in June 2025… On a bad day like today, appointments in the morning, my partner unable to move and can’t care for me, money would be the ideal support to give me a healthy, prepared lunch. But no one wants to talk about independence in this way. They […]
Anger is a part of this
A note I sent myself in April 2025: I’ve now reached the stage of my flare where I’m angry. Angry that I will go back to work tomorrow and haven’t had a weekend because I was too crashed to even do a tiny bit of one of the few things I can still […]
The real cost of going to see the doctor
An article was published today on the cost of getting healthcare in Australia. The variable missing was that this person still had ways to wrangle money for these visits. Not easy, I’m sure, but there are people with fewer resources. So I thought I’d write a diary of needing healthcare from the perspective of […]
The chair job
I realise “The chair job” sounds like some kind of heist movie but I didn’t know what else to name this blog post. Sorry if you were expecting a heist. A few weeks ago I saw a job ad that required you to own an ergonomic chair and while I have a ton of […]
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Executives need to be held to the same standards as regular employees
A few years ago at a former employer of mine there was a company wide survey. I think this was done every one to two years. The general consensus was that people: like who they work with are proud of what they do have issues with workloads do not trust the executive at all […]