Recently I was lucky enough to have two pieces of my writing published. The first was for a popular Australian lifestyle website, Mamamia, entitled, “Seven things you probably don’t know about chronic fatigue syndrome.” I was very grateful for the opportunity to share my experience of ME/CFS with a wider audience, and it was well-received within the Aussie ME/CFS community.
If you have anything to do with the ME/CFS community, you can’t have missed hearing about Jen Brea’s TED Talk. Her speech, “What happens when you have a disease doctors can’t diagnose”, was the first of its kind to address ME/CFS. If you haven’t already, I would highly recommend you watch the whole video – Jen is an engaging speaker, and in 17 short minutes, she covers nearly every issue facing ME/CFS sufferers today.
However, I know that not everyone has the time in the day to watch a 17-minute video, and many ME/CFS patients cannot watch video or listen to speech at all. (If this is the case, and you still have the ability to read longer texts, I would recommend looking at the transcript of the speech.) So just for you, I’ve picked out my top ten take-aways from Jen’s speech. Continue reading “10 take aways from Jen Brea’s TED talk”
One of my go-tos when I’m stuck between knitting projects is a hat. They take very little time and yarn to knit, and I can usually squeeze one out from leftover yarn from a cardi or jumper. The yarn in this particular project (Heirloom Easy Care 8ply) was leftover from my Pumpkin Vianne cardigan, and because I’m an unimaginative clod, it’s called Pumpkin Chevrons.
Last week, I talked about how people with disabilities can be “othered” and presented as different to, and therefore less than, the rest of society. Othering – the characterisation of a certain group of people as intrinsically unlike the “rest of us” – can occur in a myriad of ways, but perhaps the most obvious example is media representation.
One of the strategies I use to maintain my current level of activity is have my dad take me for a drive in the afternoon. It gets me out of the house at a time I’d really rather be sleeping, and ensures I stay accustomed to the (horrible!) motion of the car. The sun has been so hot this summer that I can feel it burning me through the windscreen (sunscreen or no), and I’ve been covering up with a multitude of scarves.
Hi folks! Just an update that I’ve had another story published on The Mighty. It is about the continual process of grieving through chronic illness, and how so few people can really cope with others’ grief.
One of the greatest burdens of having a disability is the oft-repeated myth that in being disabled, we are ourselves a burden. That the lives of the disabled are by definition, less worthy than those of able-bodied people, and that any attempt to accomodate us is a praise-worthy deviation from the norm, rather than a basic standard of behaviour. Continue reading “On Burdens, Othering, and the Social Model of Disability”
This is another in a series of summertops I’ve been sewing. The fabric is a gorgeous rayon from the Spotlight $2/m clearance table. I usually don’t wear much black, but the gem-like colours in the pattern were too entrancing to resist.
You can’t go very long living with a chronic illness without hearing the word “deconditioning” whispered in your ear: by doctors, physios, and society at large. “You MUST exercise,” they say, “or your muscles will waste away to nothing. Don’t you want to get better?” However, as important a role exercise plays in chronic illness management – and I do not deny it has a role to play – I believe that an overemphasis on exercise and deconditioning can be a distraction from seeking real treatment and places the onus of illness squarely on the patient.
Luckily for you (and me!), their mum is an ace photographer, and took some beautiful photos of Freya and Eliza wearing their dresses at the Port Fairy beach. These photos certainly brightened up my day, and I hope they have the same effect on you. Enjoy!