I am a member of quite a number of Facebook support groups for my illnesses, particularly ME and POTS. One of the biggest themes I hear from others is a struggle to be heard, understood, believed. I don’t often have
Until I was too ill to go out much, I walked through my neighborhood every day. I walked to work from 2008-2016. I got a dog in 2014. I have a deep connection to this little part of the world.
New wheels! I’m so excited to have gotten my first wheelchair! It took a lot of research, and I’m having a really mixed experience with it. Delight! Hope! Frustration! Sometime in the fall, I started having periodic fantasies of going
I spend about 90-95% of my time in bed. I’m able to get up to use the bathroom, grab something from the kitchen, get a book from the living room, but I don’t move around much more than that. And
Here’s the thing about having a really disabling chronic illness. It’s unpredictable. And very difficult to plan for the future. While I have several conditions, the one with the most dramatic impact on my life is ME/CFS. I could improve.
We are not shown many examples of disability in the media, and the ones that we are shown are often portrayed as tragic, or in the realm of inspiration porn. People seem to have an idea of disability as being
Blame hedonic adaptation: the tendency for us to get used to things over time. Source: What to Do When You’re Bored With Your Routines One of the things that gnaws at me a little is how much my life has
Wow. I just finished this novel, and it was intense. It hurts to read. It hurts to imagine. And it hurts in moments where it is relatable, despite my culture and privilege differences from the characters. Etaf tells a story