My Equipment and Gadgets - Part 5

Although I only really use my bedroom for sleeping in and storing my clothes, standing frame and electric wheelchair, there are quite a few bits and pieces that I have gathered to maximize my independence and to make it more accessible.

I have always struggled with keeping my quilt up when I am in bed, especially during the summer months because I have a lighter tog duvet when it’s hotter and as the summer quilt is thinner, it moves more when I move. I have a double quilt so that I can tuck it right under the mattress and that helps to prevent it from coming off completely, however, I still have the problem with it gradually moving lower and lower down my back (I sleep on my left side, facing the wall). I am currently working with a gentleman who works for a charity called Remap, to try and get something to enable me to pull my quilt up on my own. So, hopefully, between us, we can work something out.

You can read about Remap here: https://remap.org.uk

I was under the impression that live-in carers are there to help 22 hours a day, but technically they only work 10-hour shifts and you’re not supposed to ask them for support during the night unless you have a night carer (I generally don’t need help at night, so I’m not funded for this). This has only recently been confirmed to me. I do understand the reason behind this, but I also think that this is a bit daft because there are times when I need support at night and knowing this makes me feel awkward calling them. However, if I do need help at night, or when I am ready to get up in the morning, I have a bell attached to a clipboard to call. - This clipboard is attached to the bottom of my bedside rail by my feet. Originally, I was struggling to know where to put it so that I could reach it with my foot under the quilt, but not press it by accident... I’ve only done this once, and this was because my whole body was all over the place due to my stress levels being sky-high… I tried putting it in different places and much to my OCD’s disgust, the best place was slightly off-centre, halfway way between the top of the clipboard and the other switch that I control my lamp with.

Right, so I don’t like to admit this, but I have a fear of lightning… As a child, I was scared of thunder because I didn’t like the noise and my parents used to tell me that it was just God moving his furniture around to try and ease my fear. (I still don’t like it as it makes me jump, but I’m not frightened of it anymore.) I really don’t remember if I was frightened of both thunder and lightning back then, and I eventually got over my fear of thunder, but I seemed to switch from being frightened of thunder to being frightened of lightning… Can you work that one out? I think it’s because I realised that thunder can’t hurt you as it’s only a noise, whereas lightning on the other hand is caused by an electrostatic discharge (most travel from the ground up), so even though it’s extremely unlikely, I know that lightning can hurt you. So, when there’s a thunderstorm, especially when I’m in bed, I like to have a light on so that I can’t see the flashes. When I was living with my mum and dad, I would call them to switch a lamp on beside my bed, but with this switch on my clipboard, I can do that myself. I also use it when I am struggling to sleep.

I already have a fan with an infra-red remote that I control using my tablet, which works brilliantly, but I just have a standard tower fan in my bedroom. I have just tried to get myself a remote-control fan for my bedroom. I have been thinking about this for a while now, but I didn’t do anything about it because there was the problem with where to put the controls to ensure that I could use it, but since it has been getting warmer, I decided to pursue the idea… I had a look on good old Amazon for an appropriate fan, and thought I’d found one but unfortunately, when it arrived, the buttons on the remote were too small for me to be able to operate them with my foot under the covers, so I guess it’s back to the drawing board and keep relying on someone else to turn my fan on and off. The problem with this is that I have to either have it on all night and hope I don’t get cold, or call someone to turn it on or off for me.

See you tomorrow for Part 6!