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.
If you’ve been involved at all with the ME/CFS community, you will be well aware of the significance of the release of Unrest, the independent documentary by debut filmmaker Jennifer Brea about the illness. If not, it’s hard to overstate the important of this film for people with ME/CFS. Ours is a story that is not told in the mainstream media, or one that is so poorly represented that it usually makes a mockery of our lives. Continue reading “So I watched Unrest”
The other week, I took a short trip to Aldi to nab some bargain merino tops (man, I love Aldi). As dad pushed me in my wheelchair to the cash register, I dumped my purchases on the counter, got out my wallet ready to pay, and smiled and made eye contact with the cashier. He promptly looked away from me to dad and asked, “how are you today?” The way he reacted, dad could have been pushing a trolley full of discount TVs instead of an actual person.*
It’s my 10 year high school reunion this weekend, which is a shitful time for anyone, let alone someone with a chronic illness. Just the thought of it acts as a reminder that my life is nowhere near where I thought it would be, or where I want it to be now.
One of the most important coping skills for living with a chronic illness is self-management. When your energy is so limited that you have to ration it for each daily task, self-management provides the tools to do so. It plays an even larger role when your illness has no other treatment available, such as ME/CFS.