Setting up your living space to support you is a key part of improving your quality of life as a chronically ill person. I didn’t know I was going to be bedbound when I sold my house and moved into my apartment. There are several things about it that aren’t necessarily ideal about it (too tight to use my wheelchair inside, zero view from my bedroom window). But there are also some things that are great (close proximity of my bedroom to the bathroom and kitchen – 10 steps each!). Many other things are in between, and are as good or bad as creativity and resources allow.
Here I’m sharing ideas that I and others have put together of ways they’ve made their space work for them.
From a May 2020 blog post. It starts: 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 space for maximum efficiency, and find ideas we can steal for ourselves. I did a post about this last year, and showed how my bedroom was set up then. But I’ve continued to iterate, and thought it was time for a new post. It’s long. The show and tell of what is directly next to my bed is at the bottom.
From a June, 2019 blog post. It starts: 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 my goal is to do everything I can to minimize how much I move. That’s because my energy production and recovery system is severely malfunctioning from ME/CFS, and the goal is to do as little as possible to maintain, and in some cases regain, function. Over the last six months, I’ve been slowly iterating the design of the space I spend the most time in so that it can support me in the best ways I know how. I used to love those “what’s in your bag” posts. So I thought I’d do a long “what’s next to my bed” post.
From a June, 2019 blog post. It starts: 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. I could worsen. There’s no way to predict. It’s not well-understood as a disease process, but there is fast-paced emerging research. Which means there could be treatment in a few years. But there’s no way to know.
Ricky Buchanan’s amazing bed set up. Ricky Buchanan is bedridden from Ehlers-Danlos Syndrome, Dysautonomia, Mast Cell Activation Disorder, and Myalgic Encephalomyelitis (“Chronic Fatigue Syndrome”). She has come up with a whole bunch of brilliant and creative ways to use tools and technology to make life in bed more fun.