How I spent my birthday

Warning: contains GIFs.

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.

Hans Moleman: down I go.
I’m pretty sure this is the most-used GIF on this blog, but it’s just so damn accurate.

Continue reading “How I spent my birthday”

A health update, and happy miserable New Year

Warning: contains GIFs

A beach scene.
Stingray Bay from Pickering Point, taken by my father on one of our now-rare afternoon drives.

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.

Continue reading “A health update, and happy miserable New Year”

Unrest available for rent on iTunes

Movie poster for film "Unrest".

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.

You can read more about Unrest in my film review for The AIMN, or my previous post on the topic.

 

Unrest is available on iTunes Australia for $6.99AUD or purchase it for $18.99AUD. See the Unrest website for a wider range of international viewing options, including DVD and Blu-Ray orders.

The Salty Spoonie

Last night a friend made an excellent post on Instagram about the labour involved in being a disabled or chronically ill person and having able-bodied people constantly dish out unsolicited advice, appearance policing or thinly veiled insults disguised as treatment tips. She encouraged us to “bring on the salt”, I suggested a tee that read “salty”, one thing led to another and I ended up with a RedBubble store full of salty disability designs. ¯\_(ツ)_/¯

Black t shirt with "salty" printed in white
Salty – white text on a classic t shirt

Continue reading “The Salty Spoonie”

Under pressure – compression garments & POTS

As my POTS progresses, I’ve been trialling various interventions to reduce the effect it has on my quality of life, and sharing my findings with you along the way. You can read about my attempts to increase fluid and salt in my electrolyte drink mega-review. This time I’m looking at compression stockings, one of the most commonly recommended lifestyle interventions for dysautonomia. Continue reading “Under pressure – compression garments & POTS”

So I watched Unrest

Omar Wasow carries his wife Jennifer Brea in a scene from Unrest.
There are many promotional stills from Unrest, but this gives me the most hope.

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”

Hey fuckface, I can talk (and: on Autism Speaks)

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.*

Aldi store.
The place where dreams are made (usually).

Continue reading “Hey fuckface, I can talk (and: on Autism Speaks)”