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Support Workers’ Task Checklist
We used to tell our Support Workers what their regular tasks were, and they’d do them from memory. We found that when we rested partway through their shifts and they went home after completing their tasks, we’d get up later and find numerous tasks hadn’t been done at all because we hadn’t been there to…
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Training for Support Workers
I have Support Workers/ paid carers coming here every day to care for me with my disabilities. They need training to try to make sure I’ll be safe in their care. We try to make sure they understand what it’s like for me to receive care, as well as how to practically care for me…
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Bed Life Hack: freshening armpits!
Armpits get stinky and when you’re bedridden it can be hardest to wash your armpits. It’s easier to sit on a shower chair and rinse your private areas occasionally and dry with a towel and put on fresh underwear than to rinse your armpits. To properly eradicate their smell once they get pongy you need…
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Huge Day, Showering
So what composes of a huge day when you only live in bed? Having a shower. It’s such a huge amount of energy output that I only have a shower about once a month now. How bad does it get before I have this shower? Really bad! I smell about three kinds of onions under…
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Sound Sensitivity
I’ve reached a point where sound is hurting me physically. Particularly loud sounds. Loud voices with no melody to them (foghorn voices), vacuum cleaners, leaf blowers, horns, plastic bags, cymbals, trumpets, trombones, saxophones, cars revving: my worst nightmares right now. They feel like hundreds of little spears hitting my arms and torso and ears and…
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Loss and depression
Lying in bed all the time, you can’t help but feel grief for the losses you’ve had getting to this point and the ongoing losses you face. The loss of friendships of those who’ve just moved on, those who don’t understand, those who think you just need a positive attitude and you’ll be fine. And…
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Paying for energy use
So yesterday I had the Podiatrist come and she was here for 40 minutes while she checked my circulation and cut my toenails. The ultrasound took as long as the rest I think. I chatted with her while she was here, trying to make her feel comfy being here. Today I can barely function because…
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Podiatrist
Today I had my first Podiatrist visit ever. She visited me at home. She checked my blood circulation in my feet with an ultrasound, and cut and polished my toenails. I used to think needing a Podiatrist was one of the last lines to cross into being geriatric. I thought Podiatrists were old men in…
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Having a pet
Something that brings be great joy and comfort, and companionship when I’m very isolated living in bed, is having a pet. My pet is a cat. She’s about 15 years old, and her name is Sasa Bear. She loves sleeping in my wheelchair or on my bed by my feet where she’s known to trap…
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My Safety Box
I carry with me everywhere, a small box of sensory items called my Safety Box. I use it to look through, smell, feel, write or draw with, etc, to help keep me grounded. I take it to hospitals with me every time I go to hospital. I take it out with me. I have it…
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Bed Life and Beyond 