Is it better to be dead than disabled? It might seem a shocking question, but the idea that death is better than disability is one that is promoted all around us, from fictional stories to news reports. It’s certainly a question that journalists grappled with when (clearly) struggling to write about Stephen Hawking’s recent death, in media coverage that can best be described as an “ableist garbage fire.”
It feels strange to post an update when there’s really nothing to update, but here I go! Some time last year I consulted a neurologist to determine if there was any known underlying neurological cause for my worsening symptoms. I’m sure those of you reading with chronic illnesses will understand that seeing a new specialist is not something you take lightly – the entire process consumes so many spoons that sometimes you have to trade off whether it will leave you better or worse off, health-wise.
Just letting you know I’ve updated my Electrolyte Drinks Mega-Review post with a couple more reviews. The first is for Repalyte, a flavour-free rehydration sachet which Ruth kindly sent me. It’s a handy alternative for those who cannot tolerate flavours or extra ingredients. The other is Aqualyte, an Australian-made product which proved a sugary disappointment. Check out my mega-review post for more!
This isn’t the most fun birthday story, nor the happiest, but I believe it’s important to be honest about my symptoms to promote understanding of life with chronic illness. It doesn’t take a break when it’s your birthday! (Though I wish it did.) And if it helps others who share the same experiences, even better.
It’s lunchtime, and mum and I are preparing toasties. Suddenly, a wave of exhaustion washes over me, and I head back to my room for a quick rest before the exertion of sitting upright at the kitchen table. I’m nearly at my chair when – THUD. I hit the floor.
Something that never fails to surprise me about living with chronic illness is just how precarious your existence is. One day, you can be feeling as though you are making progress with your health, or have at least stabilised, and the next, you find you’ve slid back into a particularly nasty and unique form of incapacitation.
Just dropping in to let you know that Unrest, the independent documentary made from bed by ME/CFS patient Jennifer Brea, is now available for rent on iTunes Australia. If you’re after a belated Christmas present, it would mean a lot to me if you’d consider giving it a watch.