Out on a shopping trip recently with a good friend, she suggested I put together a list of the things I’ve learnt to be essential when getting out and about.
You see I’ve always been fiercely independent, not thinking twice about the ability to leave the house, pop to the shops, buy a few bits here and there, seeing friends. However, when M.E. hit, these things became drastically more difficult. The energy required to do each of these things was severely limited and therefore I had to work out what to do about it.
Pushing myself beyond my limits did not work (and is actually dangerous for those with M.E). Staying curled up at home did not work, purely because it does not do well for my mental health. Deciding to hire a powerchair was a lifesaver. I could suddenly leave the house without having to get in the car (and all that involves) and most importantly, I could get my desperately needed fresh air.
Over the last few months I’ve worked out which things are essential (and which aren’t) to life with a hidden disability.
So, here they are. If there are any things on this list you don’t have already, get them. If you can think of any other things to add to this list, comment below.
Radar key for disabled toilets.
Disabled toilets in shopping centres and stations are often locked by one of these “radar keys” and an accompanying sign saying “please collect the key from reception”.
It turns out you can buy your own radar key. You don’t need any proof of disability and the key is a standard one that works for all radar key locks.
My radar key lives on my set of keys, including my house and car keys, so I know I’ll always have it with me. In my opinion the radar key system is a brilliant thing. It stops random people using the disabled toilet when they don’t need to (ladies openly admitting to using it to just do their make up?) and therefore preserves it for those who do actually need the space.
Carabina Clips for shopping
This is a brilliant one. Depending on your style of wheelchair or powerchair, you may have one or 2 handles on the back seat to hang shopping off. My hired powerchair (the Sunrise Medical Q200R) has one handle across it, meaning it’s impossible to hang shopping bags off the back. When out shopping recently I saw a lady with a very similar powerchair to mine, with 2 carabinas on the back: one for each side, with shopping hanging off each one. Perfect!
A Powerchair Control Cover
Welcome to the UK. If you haven’t worked out already, it rains. A lot. If you’re like me and like to still get out of the house even when it’s raining, you need something to protect your powerchair controls. You don’t want to get your joystick wet. But you do need to be able to see it.
That’s where a see-through plastic bag, or a powerchair control cover comes in. Protects your hand and joystick from the rain but see through enough to see the buttons and controls you need.
Some powerchairs have light systems on them already. But if you’re like me and yours doesn’t, a set of bike lights is essential.
I found myself in a rather tricky situation a while back, when the train I was on became delayed mid-journey, causing a 1-hour journey to take 3 hours. Because I don’t yet have a ramp for my car, and the powerchair is far, far too heavy for anyone to lift, and there was a mightily enormous queue for taxis, I ended up having to wheel home in the rain, in the dark.
Granted, the street-lights were on but they don’t light up the entire pavement, especially the dropped kerbs and inevitable puddles around them. Quite frankly I was terrified about both crashing into something, or something crashing into me.
I now have a decent set of bike lights, one on the leg bit of the foot-rest, and one on the back handle bar, that not only can show other pavement users I’m coming, but to light up the path in front of me.
A Blue Badge for parking
Because of the new law in place to make it easier for those with invisible disabilities to access blue badges, more and more people with M.E. can get one. If you haven’t got a blue badge already, get applying for one now.
For me, the blue badge means I can park as close as possible to the entrance of a shop or building, and therefore precious energy is not wasted simply from getting from car to location. When energy levels in chronic illness are so very limited, one has to use them carefully.
So, readers, which of these do you have already? What are your must-haves for getting out and about? Comment below and share what you use to help you.
Until next time,
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