People seem curious why I’m not more angry about the illnesses that ravage my body, erode my sense of trust and safety in myself, limit what I can do in the world. I don’t know the full answer. But I
30 Years
Trust Us To Be Reliable Narrators
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
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
Some Coping Approaches for COVID-19
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.