Becoming A Power-Chair User: FAQs, One Year On [AD]

pippa in powerchair with back to camera, disneyland paris castle in background

[AD] Many thanks to CareCo for sponsoring this post: you can find links to items which may be helpful for new or prospective power-chair users throughout this piece. As always, opinions are all my own!

Last year, I became a power-chair user. Shortly after, I published my most-read blog post to date: Powerchairs Aren’t Just For Elderly People, discussing the marketing of mobility aids and how often this excludes and alienates the younger generation who also require these assistive devices. And whilst sadly there have been no major improvements in this area over the last 12 months, it’s safe to say that using Janice the power-chair has made a huge difference to my own quality of life.

It’s unsurprising, given this lack of inclusivity online, that many people have questions about being a power-chair user as a young adult. Over the last 18 months, I’ve received questions spanning from how to choose the right model of power-chair, to managing and taking care of it, to dealing with stigma and negotiating tricky situations when out and about.

I do my best to answer individual queries and at least signpost people to useful resources, but I felt it was time to write a summary post, featuring the most commonly asked questions over the last year. I also previously asked for any further questions over on Instagram, so many thanks if you submitted one of your own. I really hope you find the following answers about my own experience helpful!

What make is your power-chair, and what made you choose that one in particular? 

pippa and izzy outdoors, izzy stood taking a selfie with pippa sat in powerchair in the background, smilingMy power-chair is the Eden Comet from Eden Mobility. Because of only needing a more basic model to meet my relatively straightforward needs, my hunt was primarily for something relatively small and more dainty-looking: a model that would be easiest for me to manoeuvre and look after myself.

I’d be lying if I said cost didn’t have an impact on my decision, but fortunately, some of the more-affordable models actually suited my basic needs pretty well. The only thing I would’ve changed or done differently if I was choosing now would have been hanging on and saving up a little longer so I could opt for a model with a slightly higher backrest. I definitely think this adaptation would make sitting for longer periods more comfortable and less physically-demanding on my core and upper body.

Did you purchase the power-chair yourself? Is there any funding?

Although my transit wheelchair was provided by the NHS, I knew going into this whole thing that I wouldn’t meet the criteria for an electric wheelchair. After all, I don’t require this aid 24/7, and only ever need to use it outside of the house. Because of this, I did need to fund the power-chair myself. Even though my model of chair was at the more affordable end of the mobility aid scale, it was a hefty purchase that took a significant chunk out of my savings.

However, what helped me come to terms with this decision was thinking of my power-chair purchase as an alternative to a car: instead of buying a car that I really don’t need at the moment, I  purchased a power-chair that’s had a much more positive impact on my life and my independence.

I believe NHS Wheelchair Services do provide assessments for electric wheelchairs, however there are stringent guidelines and criteria that need to be met. More information on this, as well as the Motability scheme for those receiving disability benefits, can be found on the NHS website.

What was the process for purchasing and delivering your powerchair? Did you have an assessment or visit?

pippa in powerchair turning around to face camera, green grass and blue sea in backgroundFor me, purchasing the chair myself, my first step was to visit my local mobility branch: I’d already identified the chair I liked online, and going to try it out myself in the shop helped to solidify my decision. I was surprised at how easy I found it to drive the power-chairs right from the beginning, but if there had been any issues or if I couldn’t manage it, it obviously would have been wise to confront that early-on. Always try before you buy.

As far as I know, you can’t take models out of shops for a test drive before you purchase. However, Shopmobility, a charity that provides mobility aids for hire in city centres, might be a good shout if you have one nearby: you can hire a power-chair and take it around your local area, in return for a small charitable donation. Doing so can give you a good insight into how accessible your surroundings and local amenities are too.

Anyway, shortly after my shop test drive and a stint around the wild, wild streets of York City Centre with Shopmobility’s own model, I officially made the purchase, along with insurance and warranty. Delivery was arranged for a couple of weeks later – I believe this is the standard time frame, although at the time it was rather difficult to wait patiently. My power-chair was delivered by a member of staff to my home address, and my living area and the practicalities of where I would use and store the chair were also discussed during this visit. This proved to be a good indicator of whether I would need to source ramps and other assistive equipment too. Shortly after that, Janice and I officially met and began our life together. Name a more iconic duo… I’ll wait.

Where do you store your power-chair when you’re not using it? How do you manage charging the battery?

careco outdoor protective sheet in black, draped over mobility scooter
CareCo Deluxe Scooter Storage Cover. Image Credits: CareCo

This is probably one of the most difficult parts of being a power-chair user for me. I live in a flat in an inaccessible building, so Janice lives outside in a locked communal bike shed when I’m not using her. I double lock her securely and use an outdoor protective sheet to shelter her from the elements, but getting the heavy battery in and out of the building when it needs charging is a big struggle. I wait until somebody else can help me with it when I can, but if you’re also living independently and looking for solutions, it may be worth considering either two smaller and lighter batteries instead of one big one, or searching for a little trolley or assistive device you can use to pull the battery along, rather than picking it up and lugging it around each time.

Thinking about storage and charging the battery is something I wish I’d given more thought to before purchasing my power-chair, and something that often isn’t mentioned or acknowledged online. My friend Natasha Lipman has a fab post on her blog all about things people wish they had known before they got their own mobility aids, and I’d strongly recommend giving it a read and finding out about others’ experiences before you take the plunge yourself.

How do you manage getting to places with it? How do you get the power-chair into a car?

pippa and kate both sat in powerchairs and smiling, outdoorsI’ll be honest, it took me a good two months to work up the courage to attempt public transport with my power-chair for the first time. And whilst trains have been a bit hit and miss in terms of assistance (those ramps can be seriously steep…), I’ve been pleasantly surprised at how easy it is to get the bus! The ramps tend to be nice and low, passengers helpful, drivers (for the most part) attentive and *touch wood*, I’ve never had any major issues.

I don’t currently drive or own a car, so I’ve never had to get the power-chair into or out of a vehicle independently. However, if I’m going somewhere with friends and family, my particular model comes apart into separate pieces: the seat, the battery, the frame and the wheels, which can be lifted into the boot or back-seat. I can even lift some of these parts myself on a good day. Unless you already have an accessible car or a hoist, I’d strongly recommend opting for a model that can be divided into parts in this way. Also handy for getting an emergency (non-accessible) taxi when you’re stuck in town after evening drinks with friends and you’ve missed the last bus home…

Have you had any technical issues?

Those of you who follow me on Instagram may be familiar with some of my ‘Pippa vs Powerchair’ stories. Janice, bless her heart, can have a mind of her own, and in purchasing one of the more affordable models of power-chair, I knew that various calamities would likely be part of the deal.

pippa in powerchair with back to camera, driving along and looking at pretty rose displays to the left

The first instance that comes to mind here took place around Easter 2019, when Janice and I were doing some shopping and living our best lives: right up until the cobbles of York got a bit too cobble-y. With no prior warning, a screw that attached the right arm of the chair to the rest of it came flying off at speed, almost hitting a pure bullseye on an innocent passer-by in the process. Luckily somebody else managed to grab the piece and hand it back to me, and though everything still seemed in working order, we got a taxi home ASAP as a precaution, just in case everything went to pieces in the middle of town. That would have been far from ideal in the City Centre on a race day.

Because I had warranty, an engineer came out to fix the malfunction, gratis, the following week, but in all honesty… Janice hasn’t quite been the same since. She’s developed a chronic squeak, the chair back no longer collapses downwards as it should, and one of the arms has fallen out of the socket and acquired a permanent wobble. Not to mention that the battery life can be a bit problematic too. When we’re out and about and Janice the power-chair’s had enough, she’s had enough. She throws a strop and she just won’t move any further. We’re quite alike in that way, to be honest…

What made you decide to use a mobility aid? How did you approach the topic with friends and family?

careco black transit wheelchair
CareCo Freedom Travel Chair. Image Credits: CareCo

Back in 2014/2015, when I was a lot more unwell than I am now, there was a time when I could barely leave the house: the exertion and payback from doing so was too much, and walking even a modest distance could make me really unwell for days. The idea of a wheelchair had never really crossed my mind, until I met a good friend in a very similar situation and saw how a transit wheelchair helped her to enjoy more regular outings with less of the dreaded ‘payback’ symptoms.

I spent a good few weeks mulling it over in my head and deciding how I felt about it, before cautiously approaching the subject with my mum to see what she thought of the idea. Part of me was prepared to fight my corner and justify my increasingly-positive feelings towards using a mobility aid, but both of my parents were fortunately open to the idea from the beginning and could see the pros for themselves: anything that could help me get out a bit more could only be a good thing.

If you’re reading this right now and you’re worried about bringing up the conversation with loved ones, feel free to use this post as leverage. Using a wheelchair, even a small, cheap transit one as I had back then, massively improved my quality of life. And in 2018, once I was managing better and living independently, a power-chair was the natural next step: something that would enable me to get out and about on my own, without needing the assistance of somebody else, whilst avoiding setting me back symptom-wise. Embracing mobility aids as a chronically ill young person is one of the best decisions I ever made.

How does having a power-chair help you/ your condition?

I touched on this earlier, but one of the characteristic symptoms of my chronic illness is something called Post-Exertional Malaise: delayed ‘payback’ for any small amount of over-exertion. The toll it can take depends on the severity of your condition and your baseline levels of activity, but for me, even now, walking or standing for anything over a few minutes at a time could make me really unwell the next day. Without a power-chair, this could (and previously did) place huge restrictions on my day-to-day activity and my ability to get out of the house.

Since using the power-chair, not only have I been able to get out and about much more, but I can actually pace myself and even take on some gentle physio, without having to worry so much about the exertion from standing and walking when I need to. One of my worries early on was whether the cognitive energy required to drive the chair would take a toll, and yes, on a tougher day it does, but definitely not to the extent I’d once feared.

Have you experienced any stigma or judgement, or awkward situations? How do you deal with people thinking that you don’t need it, because your illness is invisible?

pippa on seaside promenade in powerchair, back to cameraFunnily enough, I’ve experienced much less stigma from using a power-chair than I did/ do when using my transit wheelchair, pushed by somebody else. I’ve written all about some of those experiences in one of my most-read blog posts: Using Mobility Aids When You Have An Invisible Illness.

As you’ll see from the post, I’m fortunate to have mostly avoided people thinking I don’t need my chair: instead, the main issue seems to be people making assumptions about why I’m using it, feeling the need to air their opinions on the matter at any given opportunity, and making the same dull,  but well-intentioned, jokes about needing a driving license and speeding over and over again. Seriously, innocent passers-by. If you’re going to make a comment, at least make it an original one. Let’s see some creativity. 

And finally [my favourite question!], why is your power-chair named Janice?

Ah, Janice. Cast your minds back to a gloriously trashy British TV show called Benidorm, that graced our screens in the late noughties. You remember the passive-aggressive Northern grandma who bulldozed through the all-inclusive resort on her mobility scooter, causing catastrophes everywhere? Well, I wanted to name my power-chair in the spirit of her, but her name was Madge: a name that’s actually far too adorable for a majestic mobility aid for my personal liking. So, I gravitated towards the name of Madge’s equally gritty daughter instead – and Janice it was. The main issue now is me forgetting that not everybody knows that when I’m talking about Janice, I’m talking about my mobility aid and not a distant relation…

~

And there we have it: answers to some of the most frequently asked questions about my experience of becoming a power-chair user. I hope this post is helpful, and if you take one thing away from this post, let it be this: you do you. If mobility aids help reduce your fatigue and pain and enable you to continue being your fabulous self, then in my opinion, you deserve nothing less. You’ve got this.

[AD] Many thanks to CareCo for sponsoring this post: you can find links to items which may be helpful for new or prospective power-chair users throughout this piece. As always, opinions are all my own!

1 thought on “Becoming A Power-Chair User: FAQs, One Year On [AD]”

  1. I’m also a relatively young powerchair user, though mine was off ebay after extensive research over a couple of years, although overlooking this particular model because I didn’t realise the base separated into parts (thank you brainfog for casting doubt on how extensive my research REALLy was), then finally stumbling over the specs again and realising it might be possible. A couple of days later I found one in my price range for sale locally and was able to try it out, and usually between us Mum and I can lift the base into the car without dismantling it (but seat off and battery out, of course).

    For me, it’s been amazing to have freedom and independence on the rare occasion I’m well enough to go out, and actually I can last longer than being pushed because I don’t have to find the energy to communicate with someone pushing me. I can just have the vague concept/thought of where I want to go and just go, instead of having to identify the thought, find words for it and express it in an understandable way. I also don’t have to worry about if it’s ‘worth’ stopping to look at something, or going back to work out what something was, or just viewing something from a different angle because I’m not using anyone else’s energy, just my chair battery! And when I’m with someone it’s a lot easier to hear them from the side than from behind.

    Before my powerchair I had a self-propelled chair which I bought myself (but of course couldn’t move it more than a couple of metres) and prior to that had hired wheelchairs for going on holiday (never abroad, we can’t afford that) or checked there were wheelchairs to borrow on days out. I had embraced the idea of mobility aids long before it was practical to own my own. The specialist Chronic Fatigue service who eventually diagnosed me have offered zero mobility help and I don’t meet our local wheelchair service’s criteria for any help as I don’t need it in the house so I’ve had to do this all myself. Ironically, if I DId have to do any normal household daily activities I probably would be ill enough to qualify, but I’ll take some quality of what life I have over what would only be minimal NHS ‘support’.

    I don’t know where I was going with this ramble. Anyway, yay powerchairs! Yay freedom!

    (This comes up in all caps As I’m typing so I hope it doesn’t show that way when I submit the comment.)

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