Rheumatoid Arthritis and when is it time for a wheelchair

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There’s a lot to consider when you buy a wheelchair.  Sounds simple.  You need a wheelchair, you buy a wheelchair, life gets easier.  Except like most things, it’s not that simple when you’re standing on that precipice.

My service dog trainer has a disease that causes progressive paralysis and weakness (not to mention pain) and she is in a wheelchair full time.  She told me I’m what ‘they’ (people who are wheelchairs full time) call ‘lucky’.

I agree, I am most certainly more lucky than she.  But I have a whole different set of problems. I am lucky that I don’t need a wheelchair full time. I don’t even need a wheelchair most of the time.  There are times when a wheelchair would have made life much easier, allowed me to move with much less pain. A power chair would have allowed me to enjoy getting out of the house, instead of staying home, or struggling to walk in severe pain.  But it isn’t as simple as just going and buying a wheelchair.

The first thing you need to decide is what your main purpose for the wheelchair is.  Do you want it to get around your house?  Do you want it to get you outdoors, down to the park? Do you want to cruise the footpaths or around the shopping centre?  Do you want it to be able to do ALL of that?

If you mainly want to get out and about and get your shopping done, a scooter will do fine. They are generally cheaper but they have a much larger footprint.  There are many shops where you couldn’t comfortably take a scooter.  You’ll get your groceries done, and you’ll cruise the footpaths, but forget about that trendy boutique, or the nerd shop or the gamer shop.  Places that I want to go with my teenagers.

So a scooter will not serve my purposes.

Then there are powered wheelchairs.  Powered chairs have a much smaller footprint and turning circle.  But only the more expensive ones will handle outdoor terrain and allow you to hit the footpath and the trendy boutiques.  They are also large, heavy machines.  To get one into a car, it needs to be a custom modified van, or similar.  And you’ll need an electric lift or hoist to get the wheelchair in there.  So we’re really talking about a LOT of money now.

Moving onto folding power chairs.  As you might expect, these can be folded and put into an ordinary car. Sounds good. Except they break down into several pieces, and the largest ‘piece’ is still often in excess of 25kgs.  When I am unable to walk, it is because of severe pain in my spine and hips.  When I am in that much pain, I can’t lug a folding wheelchair that weighs 25kgs.  I wouldn’t be able to lift it into my car.  I wouldn’t be able to put it together and take it apart because I have very poor hand function.  So it won’t help me get off the couch if I’m not strong enough to put it together, or in too much pain to put it together.  So that won’t work either.

And here’s the real problem. My house is completely wheelchair inaccessible. I can have the wheelchair inside, or outside. Not both.  There are six stairs in the garage for the internal access to the house. I crawl up those sometimes.  There are a set of three steps and two steps from my driveway to the front door.  The front yard would be very difficult and expensive to change to a series of ramps.  It may not even be possible.  Or not in any way that makes any sense or look decent.   So, it if comes to having a wheelchair, I really need to move house.

I don’t want to move house.  This is my home. I love it here.  My kids love it here.   Moving is a huge amount of work.  I would have to do it on my own. And it’s very expensive.  Buying and selling and moving will involve fees of at least $25,000.  And that’s conservative.  It would mean uprooting my kids, who don’t want to move.  Most importantly, I have nowhere I particularly want to move to. I am happy here.  This is home.

So no, I don’t want to move house.  I realise I may have to move, and if it comes to that, of course I will have to.  But this is why it’s not as simple as pick a chair and buy it.

There is one more option, and that’s a motorized attachment for a manual wheelchair to turn it into a powered device.  Some lightweight wheelchairs can be as light as 10kgs.  The best power assist system that I have seen weighs 7kgs, and attaches easily to most chairs.  So it would be light enough to manage, even on a high pain day. It would be portable enough to get into my car.  And it could be carried down the stairs to my car.

But we are talking about a system that would cost in excess of $10,000.  That’s cheaper than moving, but it’s a lot of money for something I need sometimes.  And that’s where needing a wheelchair sometimes makes life more difficult.  If I needed it every day, it would be a simple, clear decision. Non decision. But ten grand for something I need sometimes is a huge amount of money. That’s more than my car is worth.

And that is another issue.  When I am in that much pain, it’s not really the inability to walk that keeps me housebound. It’s the inability to drive safely.  It’s not safe to drive when I’m in that much pain.  And it’s not safe to drive when I’ve got that many pain killers on board.

So the big question is, if I’m in so much pain that I can’t walk, will I really be able to get out anyway?  Will I be too dizzy and sick and fatigued to manage? Will I even want to?  Sometimes I have no choice, and on those days, a powered wheelchair would be a godsend.  But if I only need that chair once or twice a month, that’s a huge in expense.  The alternative is to suck up the pain and walk. And if I can’t walk, then I go without.  If I can’t go without, I have maybe two friends I can call.

I am keeping a log of how many days I feel bad enough that a wheelchair would really help, but not bad enough that I could still get out. Early results are not encouraging me to spend the money.

The issue that I am purposely avoiding is my real problem.  My lack of a person who is there to help me.  If I had someone else to deal with the bulky folding power chair, no problem.  A cheap enough option that I would be OK with spending the money for the benefit.

It always comes back to the fact that I’m on my own. I don’t have anyone to help me.  I could do so much more if I had a person who was happy to help.  Who could toss the wheelchair in the car and help me get it set up on the other end.  None of this would be a problem then.

Finding that person is more of a problem.  Hard to meet people when you can’t get out much.  Maybe I could get out more if I had a wheelchair…

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