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.

 

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

 

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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

 

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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.

 

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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.

 

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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.

 

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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.

 

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

 

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

 

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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.

 

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

 

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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.

 

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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.

 

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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!

 

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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

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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

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

Updated April 2018. Please let us know if any links on this page stop working. If you found this page helpful, please share it with others by pressing one of these magic little buttons: 

14 thoughts on “Ricky Buchanan: geek-creative-disabled-bedridden-internet-citizen”

  1. hanks Ricky Buchanan for the pics of your bed, keyboard & PC setup. Am working on a similar concept 🙂 And tks also for the Sugru tip – hadn’t heard of it!

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  2. I have a set of Ricky’s Energy-Saving Self Care cards. When we are most ill, it can be hard to make even the simplest of decisions, let alone come up with a nice idea for something low energy to do. The cards make it easy! 🙂

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  3. Thank you for sharing some of your brilliant ideas. Necessity is the mother of invention and you have shown that to be true through your creative inventions. You have really struck out in the health stakes but clearly your courage and intelligence are much amplified. Best wishes for your continuing struggle. I have seen you post before, now I will know some more of the person behind the post.

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  4. Ricky, thanks for a great post! I love the computer thing you rigged up. Is there any way we might be able to get a better look at it? I’d love to rig up something similar for myself. What kind of base is it standing on? Does it ever fall over?

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    1. From ricky:

      It’s never fallen over thankfully! It’s pretty stable and you’d have to work hard to tip it over.

      The bottom part looks like the lower half of an over-bed table – “C”-shaped base on wheels kind of like this https://ilcaustralia.org.au/products/12523?search_tree=547 – it fits under my adjustable bed. It was custom welded by a guy who does welding jobs, so he designed it to be stable!

      At the top there’s a horizontal crossbar and attached to that is a bracket designed for mounting LCD TVs on walls. That gives an easy way to attach the computer itself to the crossbar, and also gives you ways to adjust the angle in all directions – this is the one I’ve used because it tilts downwards a lot more than some others do https://www.selby.com.au/brackets-and-wall-mounts/lcd-led-plasma-mounts/10-to-32-inch/wall-mounts/tilt-brackets/btech-flat-screen-wall-mount-42-inch-bt7517b.html

      Hope that helps!

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  5. You are incredible! I can just imagine or maybe I can’t all the amazing things you must have been doing before you got sick. Wow! Anyway you should be quite proud of all that you accomplish from your bed! I have been sick with CFS now for 12 years. I do figure out how to do things on my own as much as possible but it is hard sometimes when you are mostly alone all the time.

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    1. Thanks Gloria, I appreciate the comment. I wasn’t doing anything particularly amazing before I got sick though – I was a university student. I’ve been sick more than half my life, so I’ve had a long time to figure stuff out.

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  6. Ive been in bed a lot more this year than in the 10 years I’ve been sick. It is so true that if you give people diagnoses that can be proved like parkinsonism or Alzheimer‘s or epilepsy they are so much more helpful than if you just have chronic fatigue which becomes chronic general illness that manifests in any manner of problem and my doctor sends me off for days of tests that are negative and then refuses to give me pain treatment.

    This blog has been amazing and I’m just starting on the first page!

    I’m a natural born problem solver and did that as a career for a while but for myself I’m so tired and so depressed I don’t even wanna live anymore.

    Occasionally I join a support group like Chronic Pain Anonymous but online groups are often together for a while and they tend to be positive and sometimes they don’t talk about pain, they talk about their puppies and cats and families and I don’t have any of those things anymore. I lost a lot recently and I’m depressed and angry and frustrated and support groups really don’t want to hear that. Who would? So maybe I can spend some time focusing on putting up Christmas lights or decorating my home with the help of a neighbor.
    What I really need is human contact, real live people exchanging bio-nutrients, something like pheromones. That’s the hardest part for me, having meaningful relationships with people who can come to see me. I have a neighbor who comes over to check on me and helps take care of me but I think he has ADD and in the middle of my sentence, he will get up and walk away or interrupt me or begin a conversation about something irrelevant. My landlord’s been helpful too but she has OCD and she talks compulsively. How do I obtain meaningful relationships with people of like mind? Can I get those online?

    I’d love to talk sometime!

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