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

Stretching Disability Living Allowance to its Limit

Stretching Disability Living Allowance to its Limit

Yesterday I had an assessment by Social Services for Direct Payments.  I’d been waiting about seven months for it after being assessed as ‘Urgent’.  The Social Worker was fine – we talked through my condition, how it impacts me, the average day and what help I need.

What I did find interesting during the assessment is that after I was asked to give an overall idea of the help I’d ideally like – she then gave me a list of everything that my Disability Living Allowance was expected to cover, and so Social Services would not.  From my list this included all cleaning, gardening, treatments not covered by the NHS, help with pets, and any activities even if they related to quality of life/better health and more.

As an aside, while I was aware of the cleaning issue, I am appalled that Social Services won’t help people with disabilities with cleaning at all.  It’s not a cheap service to have, and I find it totally impossible to do such physical tasks as hovering, dusting, clothes washing, changing the bed sheets – and there’s people a lot worse than me out there.  So they’ll pay to get you out of bed, and showered – then leave you in squalor to fend for yourselves?

But, back to my main point, I thought it was interesting how far she expected DLA to stretch.  I currently use my DLA for an adapted car that has a hoist for my wheelchair.  Without this, I couldn’t leave the house – as my wheelchair won’t go on buses, and wheelchair-adapted taxis are a rare sight to behold in my town (and usually double the price).   Other people will often use this payment to hire a wheelchair from Mutability, or on taxis to get out and about.

Out of the rest of my DLA I and many others pay for things like extra heating, carers, mobility aids, therapeutic devices, special clothing/shoes, food that’s easier to cook (pre-prepared), the higher rents of accessible accommodation, medications, supplements, extra washing loads, specialist exercise programmes, special cushions, adapted items, insurance for wheelchair/scooter, petrol for additional car journeys (doctors/hospitals/travel to specialists often miles away, physiotherapists, other therapists, assessments as well as journeys most people would walk – but you have to drive instead) and so much more.

Of course people with disabilities are statistically more likely to be on a lower-income than the average person, even when able to work.  So DLA may also help towards rent, bills and normal day-to-day living costs.

When I was trying to obtain an electric wheelchair through the NHS, as I am physically unable to manually propel – I explained I was using my Mobility Payments on a car that I needed to get to work.  The assessors response was that I should be using it on a wheelchair.  I pointed out that if I used it on a wheelchair and gave up my car, the wheelchair would have to live in the garden – and I would have to live on the sofa, as the car was vital in transporting the wheelchair, so what would be the point of that?  She had no answer.  It seemed it was their policy to be telling people to spend the DLA on wheelchairs too.

But it doesn’t cover a fraction of the extra costs I have for being disabled, and while I totally understand there isn’t a limitless supply of funds – it doesn’t help when agencies are putting more and more strain onto the benefit.  Exactly how far do they expect DLA to go?

wheelchair push

Trip to Colchester Zoo

Trip to Colchester Zoo

Last weekend I went to Colchester Zoo for a Sensory Day with some members of Fair Access to Colchester.

I tried to get a scooter from Shopmobility for the day – they usually have a Paris Shoprider that easily breaks apart to go in a car, which I’ve taken on holiday numerous times.  Sadly, someone had taken it out for sixteen(!) weeks and they only had one.

Option two was an electric wheelchair they found in the corner of the storeroom.  It hadn’t been used in some  time, and didn’t fold up.  They charged it up and we went to collect it.  We put the seats of the car down, and three people lifted it in with some difficulty.  The massive battery underneath made it incredibly heavy and it didn’t disconnect.

Uh oh!  How were we going to get it out?  Luckily my mum, with help from two other people managed to get it out, and we were off.

The chair was the size of a normal wheelchair – not those massive things you see, and the battery tucked underneath nicely.  It went at a decent speed, and was easy to control.

The zoo is incredibly hilly, although they have a yellow line going round that follows the most mobility-friendly path but it was still pretty tough going.  It was fantastic.   I could choose where I wanted to go.  I could keep up with everyone, and no one was exhausted pushing me.  Unlike a scooter, I could go right up to things, and manoeuvre myself to see what I wanted.

There were a few hairy moments on steep hills where it didn’t respond to my controls, and someone had to grab the chair before a bowled over an entire family!

Then the battery started draining.  It started on five, and seemed to dip down with increasing speed.  But we hadn’t reached the elephants – basically what we’d come to see!  Determined to make it, we rushed on, skipping the smaller attractions.

A African elephant at Colchester Soo

An African elephant at Colchester Zoo (Photo credit: Wikipedia)

We made it just as the battery died completely at the furthest point of the zoo.  The zoo had an elephant feeding for what they deemed as “registered disabled” people only (although there is no such thing as registered disabled anymore.)  We then crowded round the chair to try and find the switch to make it manual, but realised with horror there wasn’t one.  It was a dead weight, the wheels totally locked, and weighing a ton.

Finding a zookeeper, we told him off our plight.  He radioed the office and asked someone to bring a manual wheelchair, and send help for the other chair.  Four zookeepers joined us, and three of them picked up this heavy chair to walk it all the way across the zoo to put it in our car.  My mum went with them to direct them, and they then found out our location and drove her back to us.  They were total stars and saved the day.

The manual chair was fine for the flat bits, but they were few and far between.  My guilt wouldn’t let me ask others to push me up hills, so I had to keep getting out which meant I reached my limit extremely quickly, my back went into spasm and I was totally exhausted.  Everyone took it in turns to push me on the flat sections and were so helpful.

So massive thumbs up to Colchester Zoo for rescuing me, although please don’t try and attempt it with a manual chair!!  We sent a letter of thanks to the men that carried the chair back to the other, and the one that brought the manual and pushed me for a little while to reach the others who’d continued to the next section.

Colchester Zoo have regular Sensory/Disability Open Days which include BSL Demonstrations, feeding sessions for people with disabilities only, and more.  

Their events page shows when they will next be having an open day.

Glamming up Walking Sticks

Glamming up Walking Sticks

I should have got a mobility aid a lot sooner than I did. I couldn’t possibly have one, I thought – I’m much too young. One day I went out on a family outing and they decided to go for a long walk. Oh no, I thought.  I tried desperately to keep up – my lovely mum trying to hold me upright as the pain increased. I was hobbling along, having to sit on every bench going. The car was now long behind, so I was stuck. I think that was the day my grandad saw how bad I was getting, when he, then in his late 80s could easily out walk me. When we got back he took me straight into a shop to buy my first mobility stick. The choice was an old fashioned floral pattern, or copper. I picked the copper one, but it wasn’t really me.

The stick made a difference – when I reached my saturation point of pain it helped to lean on, and when I was dizzy (quite often) and clumsy (very often) it helped to keep me on my feet.

I then stumbled across a website called Glamsticks where there were rows and rows of beautiful handcrafted sticks.  They started from about £20 for a light-weight handpainted one, and went up to about £55 for fully-covered diamante, glitter and more!  My first stick I picked was a multicoloured diamante folding walking stick. It was bright, cheerful and didn’t scream disabled. I got stopped constantly to compliment it.

But fickle me wanted more! My next stick was my own design (well, with a lot of help from the lovely owner of Glamsticks!) It was sprayed a pinky-gold, with butterflies and fairies outlined in pink gemstones and glitter. It’s incredibly girly and ever-so-pretty.



 But two sticks just isn’t enough! My winter coat was purple, and I needed something to match it. So my next stick was silver with prple swirls all over it. Lovely!

So that gives me three, but which do I pick in summer when I wear a lot of white and blue? I’m saving up for my fourth and probably final stick, which I’d like in shades of ocean blues.

Walking sticks don’t have to be NHS grey any more, but can be fashion statements in their own right. I want a stick that says something about me, and glitter and gemstones are perfect.

Perhaps four aren’t enough. What about one for every day of the week? Well, I’ll give it a go!

Taking the steps towards a wheelchair

Taking the steps towards a wheelchair

It took me some time to consider using a wheelchair. It didn’t occur to me that I was just as entitled to use those chairs at the front of the shop, as anyone else who needed to. I instead hobbled around, my pain levels ever increasing – until I collapsed back in the car, in agony and exhausted. I decided to give one a go in Asda, when I was with my mum. We whizzed about, and it was amazing! I could spend time looking at what I wanted, with no pain clock ticking over me. I picked which shops I went into based on whether they had a wheelchair available for use.

It isn’t always easy using a wheelchair though. For start, if you are unable to push yourself like I am, you have to give all of your independence over to the person pushing you. It’s hard to explain what this is like as a 23 year old that has been making her own decisions for years. They have the power to decide where you go, which way, what you will do. It’s a very difficult thing to get used to and you have to give all your trust over them.

It’s also an exhausting job for the person pushing you. It’s one thing in to push the chair in the shop, where there is a shiny flat floor. Outdoors there are hills, pot holes, curbs and people and so I feel an enormous sense of guilt over it.

General inaccessibility is another big concern. Many shops, particular older ones, have narrow doors or steps to get up to them. Shops put advertising boards and other objects out on the pavement, so it’s a struggle to get around it. There is a lack of dropped curbs, and many aren’t flush with the road, so it’s a case of whacking against them and hoping for the best. You have to remember they aren’t like prams that you can tilt back – they’re solid and difficult to turn.

Shops love to have large displays you can’t get around, or terrible layouts that require impossibly tight turns. Other shops have fixed chip and pin machines, so you can’t pay for your own items. Many places do not have lifts, and won’t offer service to you if you can’t reach them (despite it being against the law). I’ve been turned away from the dentist I have used all my life, as he refused to treat me in the (available!) downstairs room when I could no longer manage the stairs.

Then I discovered mobility scooters, by joining Shopmobility which gave me access to mobility scooters for a small fee. Suddenly the town centre opened up to me again. I used them to do my Christmas shopping, to meet friends and to go to appointments. I will admit I find them embarrassing to use – people associate them with older people, and particularly because I’m overweight – I worry people think I’m just lazy. Jokes about them on shows like Benidorm, where they call them ‘Crip Mobiles’ and encourage able-bodied people to use them don’t help.

The great points about them were that I no longer had to exhaust someone by pushing me; had somewhere to put my shopping; I could decide where I wanted to go, and cover longer distances. The downsides were the greater size meant even more shops became impossible to get into. We even rented one to take on holiday, that broke up into pieces to fit in the car. It was fantastic, as long as I have someone there to get it in and out the car and set it up. I even explored some caves, using one. The biggest downside is their cost – completely out of my league.

English: Out shopping Whilst the owner is doin...

A scooter outside a shop (Photo credit: Wikipedia)

I have also had some horrible experiences using one. Before Christmas I rented one to do my Christmas shopping. It was the first time I had been alone using one and I hadn’t realised how much I had been relying on the other person. I found doors that opened outwards, so I had to sit and wait in the freezing snow for someone kind enough to open it for me. I got stuck in shop displays, and people stepped out in front of me, even on the lowest speed possible and me calling out to them. It was like I was invisible. As my shopping piled up in the basket, I could no longer leave the scooter outside while I went in shops, as I couldn’t carry it all.

I went into WH Smith. First of all I couldn’t get to the part of the shop I wanted to due to the layout of the displays. A customer kindly fetched the item for me. I then attempted to queue, but the layout of the tills was so awful and tight, I banged into the barrier, and all of my shopping fell off – breaking some items. I hobbled off and tried to pick it all up, when it happened again. I was exhausted and tired, but had already entered the queuing system so I couldn’t back out again. Someone stepped over me while I was trying to pick my items up to queue in front of me like I wasn’t even there.

A customer saw my difficulty and pointed it out to three members of staff, who ignored me. In order to manoeuvre round the barriers, I had to crash multiple times into their displays, causing everyone to look at me and probably mumble about scooter drivers being a danger to society.  But there was no other choice in order to get out, as it was too tight.

I finally reached the till, and a member of staff walked over and said, “Can I help?” I wanted to throw my broken items at her, but didn’t want to spend Christmas in prison for assault.

I wrote a letter to WH Smith in December detailing the issues, and suggested that due to their till layout, they have a till right at the end for wheelchair and scooter uses, as well as anyone with another disability that would find it difficult to use the queuing system.

They didn’t bother to acknowledge my letter, until the local access group got involved for me. I found them such a help I then joined, and became a committee member. They agreed to make changes, but sadly at this date this haven’t done so.

I now have my own manual wheelchair from the NHS, which is great, but I still long for the day I can get an electric wheelchair and have some independence.