Everything is fine. I recently had a surprising morning, and a chance to practice my emergency preparedness. I want to share what happened and what I did in case it is useful to someone else. I have a special interest
Unexpected Evacuation Drill
An Anniversary: 5 Years of SSDI
But today’s a date that means something to me: my five year anniversary of being approved for SSDI.
I never hear people talk about that kind of date. But it’s the day my world changed.
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
Signal Boost: No. 1 Pacing Tip: How to Unlearn the “Completion Compulsion”
Pushing ourselves to complete a task is the most common pacing mistake most of us make. “The next step is choosing a different action. Sometimes even with awareness, we can think, “I know I’m running out of energy, but I
Unrest
Almost two years ago I sat huddled in a corner of The Engineer’s Club in Baltimore. My companion and I were catching up and she asked how I was doing. I took a deep breath and I told her. Not