Last fortnight, Australian talk show Insight screened an episode about ME/CFS. The panel included ME/CFS patients, parents of children with ME/CFS, healthcare professionals and researchers in the field. The episode had a particular focus on the benefits vs harms of graded exercise therapy (GET), which I have already written about at length.
I suspected it would happen, right from the beginning when I planned my trip to Geelong. It would be a complete disaster or a wild success, but I figured I was in a downward spiral anyway so I may as well go out with a bang. And that I did.
It’s been a shit few weeks. Months, really. My health has been irreversibly fucked up by my ill-fated trip to Geelong, yet I’ve still had to deal with every crisis life wants to throw at me. Continue reading “Trauma is the blurst (and so is the NDIS)”
View this post on Instagram
I use a wheelchair the same way I use a car: to get places that are farther than I can walk. I repeat: I use a wheelchair the same way I use a car, to get places that are further than I can walk. ID: The words "This is a mobility aid" are superimposed on a semi-transparent rectangle over an image of a very large red van in front of a building with bright blue windows. B is grinning from the front passenger seat because she's making Emily parallel park for us. #chronicillness #invisibleillness #contestedillness #undiagnosed #chronicfatigue #sleepdisorder #pcos #disabled #disability #disabilitystudies #biopolitics #sick #sickgirlsclub #illness #spoonie #spoonielife #asianspoonie #toronto #canada #asian #canadian #WalangHiya
As I’m mostly in my wheelchair when out and about these days, I’ve been fielding questions (all good natured) about its use. I’m always happy to explain about the prevalence of ambulatory wheelchair users, but sometimes want for a simpler explanation. Kat from The Willows Work on Instagram provided one:
I use a wheelchair the same way I use a car: to get places that are farther than I can walk.
I repeat: I use a wheelchair the same way I use a car, to get places that are further than I can walk.
As well as offering a pithy response to those who enquire about mobility devices, Kat sparked a valuable discussion on the use of cars as mobility aids. I’ll certainly be using her line in the future.
Or at least, that’s what I tell myself when I’m dealing with government agencies. “It’s their job to put you off.” “They make it so difficult you’ll give up – don’t let them.” “The systems are designed to exclude you, you have to fight for your rights.” But sometimes, it’s just all too hard.
Don’t expect this to be one of those “plan ahead for your international long-haul flight, try not to see too many amazing attractions in one day” kind of posts. This post is for those spoonies who can barely make it 1 hour out of the house, let alone travelling to another town; for whom a few hundred km’s may as well be around the world. (Toni Bernhard has an excellent article about how minor holidays become massive trips with chronic illness on Psychology Today.) Continue reading “Tips for travelling with chronic illness (when you’re barely well enough to leave the house)”
If you are housebound/bedbound due to chronic illness, you will be well aware of the limitations placed on yourself and others like you in accessing adequate healthcare. However, it is an issue that largely goes unnoticed, as the medical system and broader society either do not want to know or choose not to care about people in this situation.