Powerchair Update – December 2019

Hello lovelies!

It’s been roughly six months since my very first powerchair arrived home, and unfortunately it hasn’t been the smoothest of sailings. Now, all these months later, I can’t really use it.

Bugger.

My needs and requirements from a mobility aid advanced pretty quickly, a LOT faster than I was ever expecting. Plus, it turns out that “lightweight” can actually be a bad thing in a powerchair, but we’ll get to that one in a minute.

I’d been pretty reluctant to actually talk about this, because I’ve been feeling horrifically and disgustingly guilty. In the UK it’s very much a postcode lottery as to the services that can be provided by your local NHS trust. Funding is different in different areas, and there are many places that just can’t provide the wheelchair services that so many people need, and criteria is very strict and people end up missing out, or only qualify for very basic and heavy manual wheelchairs that don’t provide much independence. This leaves many people to turn to sources like crowdfunding to be able to afford their mobility aids, especially if something very specialist is needed.

When I was looking into powerchairs for the very first time, my living situation at the time meant that a small folding chair was my only choice. I settled on the Foldalite, as it was the most accessible to me at the time. I only had minor issues at the time, but I wasn’t adventuring out on my own because of where I lived; my partner would always come and pick me up. The first problem I ran in to, was that neither me nor my mum could lift the damn thing into or out of the car boot, meaning I couldn’t take it anywhere (there are small hoists available on the market that can help to lift your chair or scooter into your car, but that wasn’t something that was accessible to me due to the sheer cost).

Pixie sits in her powerchair, facing to the left. She holds an open rainbow umbrella above her with both hands, and looks up and to the left, looking like she’s daydreaming. She wears a blonde shoulder length wig, large heart shaped earrings, a purple denim jacket, a dark pink t shirt, blue jeans, and red boots with pink laces. She sits in front of some black railings , and a wall with lights built into it. In the background a small children’s fairground ride, the front of a shopping centre, and green plants can be seen.
This was taken in the summer. I would’ve said back when there was a bit less rain, but it was definitely raining here. This is England, after all

Fast forward a couple of months, and I received a diagnosis of a connective tissue disorder called Ehlers-Danlos Syndrome, which means that my joints are very loose and don’t stay in their sockets properly. At last, everything made sense … including why I ended up in so much pain after using my powerchair; it was quite literally shaking my joints out of place. Most simple folding powerchairs, like mine, don’t have any suspension or specialist seating. I ended up buying memory foam seat and back cushions, but unfortunately these didn’t lessen the effect of being jolted by every single stone or cobble I happened across.

At the same time this was happening, I moved house, which is where the part about lightweight powerchairs comes in. I’d run into this problem a few times before, but had never been on my own when it happened. I moved closer to the city which made me so excited to be able to regain some independence and go out and about on my own … until I ended up getting stuck in the road and sliding around all over the place.

When a powerchair is particularly light, 25kg in this case as opposed to 60kg or more, the weight between the powerchair and the person using it isn’t distributed as evenly. Because there’s little weight near to the ground, any tiny sideways slant in your path is an instant hazard; the front wheels go sliding down the slope, the rear wheels can’t compensate because of the weight imbalance, and I get sent skidding into a wall, or a road, or a car, or somebody’s cleverly-placed wheelie bin.

There goes the independence! Leaving the house without someone to grab my chair and pull me back to safety is a big no no. But, even with someone there, it still happens; recently it flung me into the road while walking with friends and my partner, and I’ve been too terrified to use it ever since.

And here we are, up to date with my current situation. I’ve been struggling with the guilt of my medical expenses for a while now, and I’m finding it very difficult to reason with myself. Although a suitable wheelchair is a necessity and not a luxury, I can’t help but see it as one. At the moment I’ve been renting powerchairs from my local Shopmobility when I go out for the day, but this means I have to be driven right to their doors and can’t get out independently or even with my partner.

Folding powerchairs are a brilliant concept, and are perfect for some people and their individual needs. Every single person is so very different and has a different set of circumstances, so navigating the world of mobility aids, especially powered ones, can be a bit of a minefield.

Plans are slowly forming to eventually have a powerchair that better suits my needs with more supportive seating, better suspension, and better stability.

I actually started this post a little while ago, but it just happened that the day I finished it is Christmas Eve! Merry Christmas and happy holidays lovelies! If you’re struggling or finding things difficult over the festive period, please don’t hesitate to reach out to someone. My direct messages on Twitter and Instagram are always open for anyone who needs a friendly voice ❤️

Have a beautiful Christmas, have fun, and stay safe!

Pixie x

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s