Ricky Buchanan: geek-creative-disabled-bedridden-internet-citizen

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.

Ricky Buchanan, 1998
geek-creative-disabled-bedridden-internet-citizen
(that’s me!)

Now I use my computer fully-flat on my back. I got a guy to weld a stand that sits over my bed and attached a stand meant for a wall mounted TV

In the past, when I could be up a bit, I used a setup like this where the computer is slightly off to the side between the bed and the wall and I just put the keyboard and external trackpad in my lap.

My keyboard is attached to a foam wedge so lifting of legs is not required. For mouse I use an external Magic Trackpad that sits on the bed beside my hip. The Keyboard is a Kinesis Advantage. Totally weird but super ergonomic. That’s what suits my hands best at the moment.

I have lightweight trolleys that I can move beside the bed, and a long-handled reacher that I use to retrieve things that fall on the floor. For my most vital items, such as the track pad I use to operate my computer, I keep a spare one near me. If one falls, I use the spare and continue doing my thing.

When you are bedridden, things outside of arm’s reach might as well be on Mars. I hang wire baskets full of my things on the corners of the bed.

I use Sugru to make hooks so I have things hanging on my bed head, on the trolleys and everywhere I can reach.

The makers describe Surgru as a “mouldable glue” and it does, indeed, stick to pretty much anything

I also use it to create bumpers to protect things that get dropped. It is super easy to use. Just cut the packet open and knead it for a minute and then mould it into the shape you want.

As you can see, I am not too picky about making it look fancy

I’ve found 3D printing to be so useful for creating things that need to be custom made or just don’t exist. I taught myself to create designs with the free Fusion360. My favourite design is my four-cup holder that is mounted to a miniature lazy-susan.

I got too sick to draw with a paper and pencils, or even a graphics tablet, so now I use a trackpad and Inkscape on my Mac computer to draw.

It’s not as satisfying as the paper-and-pencil sort of drawing but it’s a lot more satisfying than no drawing at all!

Everyone wants a home that feels good to be in, but when you spend 24 hours a day 7 days a week in your home, it is even more vital. A string of rainbow-coloured LED lights hang above my window. They turn on at sunset, creating a warm, happy environment.

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.

Home Automation

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

About Ricky

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

Update

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