People are very all or nothing about work and I am just… not that way inclined. Colleagues have to be friends! Nope. Colleagues are colleagues. There’s nothing wrong with being a colleague. I have a great deal of respect for many people I’ve worked with and for some, I’d drop everything (disability permitting) to […]
This is my life
Needing supports vs receiving supports
A while ago I responded to this Substack post. Particularly, this part: “It means learning to use supports (whether that’s a mobility aid, a meal delivery service, or a friend helping you with errands) before you absolutely need them.” My repsonse: I fully agree with this. The challenge is when you need […]
“It’s easier to call…”
It’s time, my fellow humans. It’s time to acknowledge that easier just means more convenient for you. The prevalence of synchronous communication is becoming an issue for me. People need to stop treating asynchronous conversation needs as second class citizens. This is most obvious in a customer service context, where asynchronous needs are met […]
Chasms
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 […]
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 […]