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.
Life At Home
I usually tell people that I have Ehlers-Danlos Syndrome, Dysautonomia, Mast Cell Activation Disorder, and CFS/ME, in that order. (Actually, CFS/ME is probably the most disabling, but the other labels get me treated better).
I live in a regular home, but I have government-funded support workers who come in twice a day for 4.5 hours total. I get to choose them and train them, so they do just what I want. It’s MUCH more freedom than a nursing home would give, so it suits me better.
Also, I have a flatmate who helps out as needed in the in-between times (if she’s home) instead of paying rent. The two together are excellent. I have used HomeShare International to find flatmates.
I use a lot of home automation technology to control my home. My home automation technology includes:
🌷 I use Phillips Hue globes in my living room, bedroom and connecting hallway that I can turn on and off using Siri voice commands.
🌷 I use Belkin Wemo switches that allow me to turn electrical devices on and off with Siri. I use these with my CPAP machine and humidifier, as well as the fountain in the living room and the gorgeous rainbow LED lights above my windows.
🌷 I use a Broadlink RM Mini device that lets me control my air conditioner via Siri too. It acts as a universal remote control.
🌷 The Belkin switches and the infra-red Broadlink won’t communicate directly with Siri’s voice commands, so I run a program called Homebridge on my Mac computer to force them to all talk to each other.
🌷 I also have a wifi IP camera that feeds video and audio back to my Mac computer. I use it to look out the window at my garden and the birds. It is also useful when my support workers get stuck. They can take the camera to wherever they are and I can see what they are seeing and hear what they are saying.
🌷 I also have a button which unlocks the front door to enable me to let my support workers and others into the house.
Self Care Cards
Check out Ricky’s Beautiful: Energy Saving Self-Care Cards
Also on Facebook: Energy Saving Self-Care Cards
Ricky’s Blog: Not Done Living
Ricky’s tech site: Assistive Technology for Apple Users
Living a fulfilling life while stuck in bed: What Do You Do All Day?
Ricky finds home aides: Mary, Karin & Ricky Find Home Aides
Ricky creates a plan for home aides: Ricky’s Caregiver Instructions
New Project by Ricky: Just Invisible: Medical Access Issues for Homebound/Bedridden Persons
More Homebound Tips
When you can’t leave your house: How to Get the World to Come to You
For folks with ME or CFS: How To Save Spoons