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,
Movie Adventure
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I went to the movies for the first time in about 16 months! My friend and I met up at @thecinemapolis to see Downton Abbey. Fun, fluffy, entertainment. Last year I was lying in bed one day fantasizing about going out in
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
Staying Connected to the Outside World
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.
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