The Difficult Decision to Get a Wheelchair

The Difficult Decision to Get a Wheelchair

This article was first published in the December issue of Living Well with Fibromyalgia

In the next year some of you may be pondering the decision of whether or not to use a wheelchair, if you’re finding walking painful or exhausting.

It’s an incredibly difficult decision, and there are often a few reasons why this hesitation happens.  For some it can feel like giving in, that’s you’ve stopped fighting.  It can sometimes feel like you’re sacrificing your mobility – that if you have a wheelchair you won’t push yourself walk at all anymore.  There can be a stereotype that wheelchairs are for people who cannot walk at all, or just for older people.  It can feel embarrassing, or like you’re making a big deal out of your situation.  There are lots of valid (and some not so valid) reasons that can make that step a hard one.

The main suggestion I put to people wrestling with this decision is – are you avoiding going to places because you struggle to walk around?  Have you stopped going out for a walk with your family, going on a shopping trip or not even considering an evening out with friends?

That’s the position I found myself in a few years ago.  I was simply avoiding those activities because walking was so painful.  One day someone offered to push me around a supermarket in a manual wheelchair they had available for customers.  I hesitated – they were for people with disabilities!  Eventually I gave it a go, and the difference it made was incredible.   I could spend time looking at what I wanted, browsing through the aisles – something I hadn’t been able to do for a long time.  My attitude changed, and I began visiting shops or places I knew had wheelchairs or scooters for customer use.  (I also accepted I was one of those people with disabilities during this time.)

I did find being pushed in a manual wheelchair very odd though, but it was my only choice as I’m unable to self-propel.  It feels like you’re giving all of your independence over to the person pushing you, and it’s hard to explain what this feels like – as an adult who has been making their own decisions for years.  That person has the power to decide where you go and what you will do, and you have to trust them implicitly.  It’s also a physically exhausting job for them.  There are lots hazards you don’t really consider when walking such as hills, pot holes and curbs, plus generally poor accessibility like having no ramps, tight turns, advertising boards on the pavements and other street furniture. The strain it put on the person pushing made me feel very guilty.

The cost of a wheelchair or scooter can also be difficult to afford.  I was provided a manual wheelchair on the NHS, but as I couldn’t use it independently and didn’t have anyone to push me around 24/7, it mostly sat gathering dust.  The decision for upgrading the manual was taken out of my hands by damage to my spine that means I can now only walk very short distances.  As I was working at the time I was able to apply for grant funding for an electric wheelchair and a hoist for my car that was available to help disabled people in employment.  Other options include schemes to lend a chair or scooter for a short period of time, charitable grants or medical insurance that may help towards a purchase.  A decent wheelchair will be costly, but it’s also worth considering buying second-hand through private sellers or online outlets.

However, getting a wheelchair changed my world overnight.  I’ve been able to go on family outings, visit local parks and enjoy trips out to local shops.  It means I can save my energy and pain levels from increasing through walking and use them on enjoying myself instead.  I still sometimes feel awkward around family and people I haven’t seen in awhile – but if they can’t accept your need to get around without agonising pain – that’s their problem.

So if you’re sitting at home still trying to make that decision and thinking of the negatives – try to think of all the positive things you could do that you haven’t been able to do in some time if you’ve struggled with walking.  A wheelchair could  open more of the world to you.

My wheelchair - an Invacare TDX

My wheelchair – an Invacare TDX

New Wheelchair!

New Wheelchair!

I had a lot of problems with my wheelchair, as I’ve spoken about before.

Luckily for me, my quest for a refund was successful.  However, it then left me without a wheelchair for six months.  I cannot begin to describe the frustration this has caused – taking away my independence.  I haven’t been able to do something as simple as pop to the shop for six whole months.

You’d think getting a new wheelchair would be easy, right?  Just a case of ringing the NHS and saying ‘Hey, I can’t really walk.  Can you order me a chair?’  ‘Yes, no problem, we’ll get right on that.’


No, no, no.  That’s not how it works.

Okay, but social services must be able to get you one, right?


Now, the NHS does have local wheelchair services.  They each have different policies.  My local one has a policy that if you can walk one step, one tiny, measly little step – you can’t have an electric wheelchair.  You can have a manual chair though, even if you physically can’t push it yourself, and don’t have someone strong following you around all day to push it for you.  So, to be fair – they did give me a manual chair, that sat dusty in my garage because I can’t push it at all, and my informal carer, my mum, has two frozen shoulders.

So then I looked for charities that may be able to help.  None of my conditions have a particularly large charity, so that was out.  There are a couple of children’s wheelchair charities – that go up to age 25/26 – but have massive waiting lists.

Now lucky me, I came across an answer – Access to Work!  I’d just started a job, a year ago, when I made my application.  I knew my wheelchair wouldn’t last, plus my needs had drastically changed – I needed something comfortable that fit my needs.

Now, I believe Access to Work is an amazing organisation that do a lot of fabulous work, but this whole process has been bogged down for ridiculous reasons.  Basically, I have an adapted Motability car, and a wheelchair that would fit my needs wouldn’t fit into my Focus.  It needed to be taller to fit a more robust wheelchair hoist in.  And I needed for pay for it again, and pay for all the expensive adaptations, and I didn’t have any money.

So then started the biggest circle-jerk waste of time known to man.  Responsibility was passed between Access to Work and Motability like the latest contagious virus.  Neither would take control, both had the answer of ‘speak to the other.’  Hence why six months later when my wheelchair finally got taken back for a refund, I was left ANOTHER six months with nothing.

It wasn’t all their fault – it took ages to find a chair that fitted my needs, and ages again to pick a car that was right for me.

But enough with the whining – I now have a lovely, amazing wheelchair.  It’s the TDX Invacare, and it runs like a dream.


The hoist lifting the chair

The hoist lifting the chair




The bar handy to put hooks to hold bags.

The bar handy to put hooks to hold bags.