Being chronically ill is much like juggling countless juggling balls, only to realise no one has ever actually taught you to juggle, and you have to muddle on as best you can on your own, with the threat of the full weight of your life’s obligations coming crashing down on you at any given moment.* Some assume that having a chronic illness absolves you from mundane life tasks, but the opposite is true: you have to deal with the same challenges everyone else does, with limited resources, as well as the other shit chronic illness throws at you.
It’s been a while since I did a personal health update, largely because I just don’t like thinking about it any more. I was reminded of this fact when I had an appointment with a social worker yesterday. She is an advocate who I employed to assist me with my NDIS application (though she has nothing to do with NDIS herself, nor does her agency in any way, and therefore has no say in their assessment of me).
My ability to read books comes and goes, but definitely spends more time in the “gone” category! At least compared to the regular nightly reading I used to accomplish with ease. Two books I completed sometime last year were Ask Me About My Uterus by Abby Norman and Doing Harm by Maya Dusenbery. Both books were about women’s experiences of chronic illness, written by women with chronic illness. They approached the topic from entirely different angles, which made for little overlap between them. Continue reading “Book review: Ask Me About My Uterus & Doing Harm”
It seems little has changed since I first wrote about cripping up in 2017. Hollywood still makes movies about, but not with, disabled people, and non-disabled actors are still cast in disabled roles as a fast-track to winning an Oscar.
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.