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

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, no.  That’s not how it works.

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

Nope.

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

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The bar handy to put hooks to hold bags.

The bar handy to put hooks to hold bags.

I HAVE MY INDEPENDENCE BACK!

Keep on, Keepin’ on

Keep on, Keepin’ on

I have a job interview next week, which involves a presentation (eek!).  My work situation at the moment is dire, and this job seems perfect for me.  I could have written the description myself.  It involves planning a new service for older and disabled people – something I’ve been focusing on for some time in my current job and at Fair Access.  I’ve spent weeks planning out and writing my presentation over and over.  I have to map out how I’d carry out the project, my plan for sustainability and all my ideas.

http://www.dreamstime.com/stock-photo-businesswoman-presentation-image13796100

But I’m due back to work next week, and both parts of the interview are on days I have to work (although luckily in the morning, when I’m due in at work in the afternoon.)

I’m dreading going back, it makes me feel sick.  My employer hates me, and makes it obvious at every turn – because when they try and do something impacting my condition I don’t just say yes.

I’m fighting a battle with my local hospital as well.  I’ve asked them to look into my lower back issues – as most other people with the same conditions I do, don’t have the same issues with walking that I do.  Don’t get me wrong, people with Ehlers-Danlos or Fibromyalgia frequently feel pain on walking, or exhausted – but generally don’t have that strict oh my god the pain cut off point.  There is an underlying issue there.  My MRI (that took seven years of begging to get a) a couple of years ago showed some degenerative facet joints and arthritis, but both at a moderate level.  At that point I could walk about 15-20 minutes.  I can now stand for less than a minute.  So my GP and I thought it very reasonable for them to look into it, maybe look at some treatment options (usually injections).  But after a very dismissive assessment, they discharged me.   I put in a complaint, and I got back the most ridiculous letter, once again dismissing me.  So I need to keep battling them.

And finally, for a few days there seemed to be a bit less pain in my lower back, and thought it might be improving a little.  And then it decided to say haha, you’re funny, and has been on fire for three days straight.  I mean it always hurts, but this is just ridiculous.

Three Weeks in Rehab – Day Three

Three Weeks in Rehab – Day Three

I wake up feeling wrecked. Despite having slept, I feel like I shouldn’t have bothered. After a breakfast of cold, hard toast, we have a Stretch session.  The physio that normally leads it is off sick, so it’s led by Marta, who normally runs the Arts and Crafts.  She had made a girl in the ward cry the day before. She has never led one before – she’s very hesitant and a bit patronising at times, explaining things to a ridiculous degree.

Almost straight after we have Handling and Lifting, which looks at lots of ways to manage around the house. I really begin to flag, and I get a massive attack of noise sensitivity, particularly due to some of the loud voices in the group, but it’s hard to explain to people, so I just try and concentrate on getting through.  We got lots of tips to help with housework and around the house.  We learnt never to bend over to pick something up, or to get something from a low cupboard, but instead to stand as if your feet are in a box, with one foot on the top right of the box, and the other foot on the bottom left.  This gives you a stable base, and improves balance.  When you go to bend, you should lunge forward on your front knee.  This takes the pressure off your spine.

We also learnt that the spine is in the shape of a lazy s, and the most delicate part of your spine is the top.  Your lower lumber area has much thicker bones/discs, and is where all your weight should be, and why you should carry objects close to this part of your body.

Straight after that I have my Occupational Therapist. She sees me looking pale and rubbish, and asks if I need to lay down. I am so grateful, and she takes me to the OT bedroom. (They have each room, a kitchen, bathroom and bedroom to show you aids and adaptations to help.) I stay there for ten minutes to try and recover, then she goes through some adaptations she thinks will help me.

I have just under an hour before lunch, and I’m really feeling rough by the time I get back to the ward. I collapse in bed and have a sleep.  This helps a lot.  I don’t like sleeping during the day, as it impacts on night sleeping, but at the moment which such a new routine, that’s very active, I need to do what I can to keep going.

Lunch is another salad – we’ve all agreed it’s the only safe choice on the menu! Everything else is utter crap. We have decided to have pizza night on Thursday as a treat.

I have my physio session. We work on building up strength in my shoulders, my core and improving my balance, and I enjoy it.  My left shoulder is particularly weak, and we spend a lot of time trying to build it up.  Weirdly, the right shoulder then spends the rest of the night hurting, which is confusing!  My physio is really nice and explains everything she does, and why she’s doing it.  Others don’t have quite such good relationships with their physio, but I feel it’s really important.

The exercise balls in the physiotherapy room.  Apologies for the fuzziness!

The exercise balls in the physiotherapy room. Apologies for the fuzziness!

My final session of the day is Sports. They lay on badminton, short tennis, table tennis and bowling. They show us how to adapt sports to our needs – so whether it’s using wheelchairs, or perching stalls. I am as terrible at table tennis as I was at school when I was okay, so I have no excuse!  I do quite well on bowling. We all then start a game of catch. It sounds simple, but it was very fun, with all the trainee physio playing, and the ball going everywhere and anywhere. I can feel my shoulders burn, but hopefully it built some strength up!

Afterwards, I find a porter, as my wheelchair is flashing to say it’s out of battery.  He said he would be able to charge it, but he’d need it overnight.  They take it, and I have to wait about twenty minutes for a porter to take me back (which is why I really appreciate my chair!).  Someone who has been using the porter every day moans she can’t be bothered to wait for him to come back, so she’ll walk back to the ward.  I think it’s interesting she can suddenly walk when faced with a bit of a wait.  When I get back, she’s fine, so it didn’t even seem to impact her.

I spent the rest of the evening chilling out.  We watch a film, and I get some jewellery orders – even from a guy on the male ward! It’s one of the girl’s birthdays on Friday, so the ward is clubbing together to buy some jewellery bits from me, as she keeps saying she wishes she had some money to get more than the one bracelet she did buy.

Overall, I think it was a bit too much physical activity in one day, although I enjoyed it at the same time.