……….How do you maximise your independence in bed, when you need help to turn, be positioned, and reach for things?A conversation with a friend with similar impairments
In Carrie Aimes’s excellent blog on living with Ullrich Congenital Muscular Dystrophy she wrote about her experiences, and mentioned “I bought a satin bed sheet and wear silky pyjamas which allow me to slide myself from side to side.” This made me think about what techniques I used to maximise my own independence in bed. I realised I own quite a lot of equipment that helps me move in bed. Some of it is made for disabled people, while the rest is standard equipment that I’ve repurposed.
A lot of the time I spend working is spent in bed. I struggle to spend long periods in my wheelchair, especially as I am prone to pressure sores, and am not meant to leave my legs dangling for long periods due to an existing wound. I have a circulating air mattress on my bed which is designed to prevent pressure sores, so I do a lot of work from there.
However, even in bed, I struggle. I can never reach everything I want to be able to reach, and I am reliant on Personal Assistants to help me with everything. These pieces of equipment help me do as much as possible for myself
Pregnancy pillow & neck pillows
I really struggle with positioning in bed. If I’m not adequately supported I don’t have much ability to use my upper body, and I tend to slip into uncomfortable positions. I have a profiling bed with airflow mattress, but this isn’t enough to position me as supportively as I need. I used to have a standard V pillow, then I discovered pregnancy pillows and never looked back. I usually buy this one but have found I needed bigger pillow cases made for it. This pillow supports me by day behind my head with my arms resting on the ‘arms’ of the pillow, while at night I’m usually positioned on my side, with one leg and one arm bent on top of the pillow, one arm under the pillow, and the pillow itself wedged against my back to stop me slipping onto my back. It has really increased my comfort, and I pair it with (as needed) a neck pillow that tightens in front of my neck FIND LINK to support my head, a small pillow behind my head, the leg break in the bed bent to prevent me slipping down the bed, and a pillow under my calves to keep my heels (prone to pressure sores) from resting on the mattress.
I always feel a bit ridiculous, especially when I’m admitted to hospital and insist on bringing this pillow – the size of a person – with me, but it’s really helpful for keeping me positioned comfortably and correctly.
The grey pillow shown above is (I think) the neck pillow I own, use, and love because it can be ‘done up’ around my neck to keep the pillow in place where it can be most supportive.
I really struggle to move in bed, and don’t always have a PA there when I need them – despite me having care needs all through the day and night, I have limited care funded. I was prescribed these slide sheets by an OT, and while I use them a bit differently to their original intention, they really help me remain independent and reduce my risk of pressure sores. The ones I have (which I think are these ones) are designed such that you put the base sheet on your bed satin side up, then put another sheet over it crossways on the bed satin side down, so that two PAs can untuck the top sheet and pull you up the bed on it. That didn’t work for me – the top sheet would crease and slide and slip – then I had the genius idea of just using the base sheet.
This turns my mattress into a slippery satin surface, helping me to pull myself around a bit. The risk of this is that it’s very easy to slide down the bed accidentally if sat up in the bed, so I have to be very alert to that and get whatever help I need to move back up the bed before my feet get jammed against the foot of the bed. It’s worth it though, because it gives me a lot more independence – while I still need a lot of support obviously, it does give me more movement than I would have otherwise had.
This is a very obvious one, but still something I rely on a lot. The grabber, always by my side, makes it possible for me to get (light) objects that are out of my reach. I chose a generic picture as I don’t have a particular grabber to recommend to anyone, but I’d be very interested in any recommendations readers have for this. I need something that is both lightweight and strong – and ideally inexpensive, though that might be an impossible combination.
Velcro cable ties
Just a little one here, but I find these incredibly useful. My bed has bars along the side, which means that I can attach the cables to those bars, and I also use them under the bed to hold the wires out of the way of my hoist legs. I wrap these round everything – my cables, my grabber – anything I need within reach, they can do the job.
I buy them cheap and in bulk, they’re also very useful for attaching things to my wheelchair, keeping my actual desk tidy etc – I can’t overstate how useful they’ve been for me.
What have you found useful in bed? Do you have any recommendations for things I missed?
If you have any questions about these, or any other product, (or have recommendations of your own) just comment, email me at email@example.com, or tweet @jamierhale
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