I so often love Brianne’s comments, questions, perspectives. And this one is particularly important. When my people *understand* what’s going on with me, that’s great! I feel seen, cared for, appreciative that they’ve taken the time to learn. But do
The Post Office: Power, Responsibility and Access
I’ve seen two flavors of memes going around lately, and they are both problematic. One directs folks to buy stamps in order to generate income for the post office. The other directs people to do things to vote that don’t depend
Bed-tethered Lifehacks: May 2020 Update
I love seeing how other people organize things and solve problems. Those what’s in your bag posts? Love them. For bedbound folks, the question is usually, what’s next to your bed? We want to know how folks set up their
Favorite Reads of 2019
I set an ambitious book goal for the year. I did not come even close to achieving it. The most important thing to know about my reading experience, is that it based on a game I like to call “library
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
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.