I know folks are feeling scared and overwhelmed with the prospect of social distancing, isolation, possibly even quarantine. Here’s a missive from someone who has experience being housebound. I’ve been mostly housebound since sometime in 2017. As of this writing,
Communicating About Chronic Illness
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
Wheelchair Investigations
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
Bed-tethered Life Hacks: Bedside Supplies
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
Quality of Life
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.
Disability and Assistive Devices
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
Signal Boost: On Disability and on Facebook? Uncle Sam Wants to Watch What You Post
The Trump administration wants to use Facebook and other social media to help identify people who are receiving Social Security disability benefits without being truly disabled. Source: On Disability and on Facebook? Uncle Sam Wants to Watch What You Post
Signal Boost: What to Say If Your Friend Isn’t Going to ‘Get Well Soon’
Not everyone with a chronic or lifelong illness is going to ‘get well soon.’ One woman explains what to say and how to be there for someone living with a chronic illness that might not get better. Source: What to