Monday 13 June 2016

Things I Wheely Need

Every so often, I end up with a little thought knocking around in my head; tiny, but persistent. Everything I do, every move I make and every aid, adaptation or accommodation I have, it whispers
"you don't really need that, though, do you? you could manage without if you'd just try hard enough"
That. Thought. Is. Poison. Nothing else. Just the spite and bile and viciousness of all the bullies and bastards I've ever been gullible enough to listen to, echoing around my psyche.

Its most recent iteration has been "you don't need that big expensive power wheelchair". Every time I stagger to the back garden and lean on the fence while the dog eats dandelions (no, I don't know either). Every time I stand and reach for something at work, or I go out with my crutches because my wheelchair won't go in someone's car. Inside, I'm yelling at myself for wasting money on such an expensive piece of kit when I could manage without. Although, I blame a lot of it on a particular supervisor where I work. That's a story for another day, though.

I think the universe decided to teach me a lesson. Yesterday, while out walking the doggie-faced one, I went up a kerb, as I have thousands of times before. Only, this time, the cable connecting the controller to the chair was hanging loose, I don't know how or why, and it snagged under the back caster of my powerchair.

Unfortunately, I noticed this when the back caster frayed a hole in the cable and the chair stopped going. I tried all the obvious things - turn it off and on, move the joystick around, etc., and then I looked down at my wheels to see if I was caught on something and spotted the cable, and my heart just sank. I managed to get it from under the caster, by rocking the chair on its suspension. I ran my hand down it hoping fervently... and found a hole in the outer casing, displaying inner, insulated wire and frayed copper strands. As my brain went blank (apart from "huh, that explains it" and some serious cursing) guess what? It started to rain. Just fabulous.

I wasn't more than two minutes from home, but there's no way I could get my big beast of a chair back there alone. And Baxter, sat patiently next to the chair, was already starting to shiver (he'd turned 8 the day before). So, I phoned my parents for rescue - for the dog, not me! Once they were on their way, I donated my coat to the dog, who sat wearing it like a cape, and I phoned the breakdown assistance thingy that's included in my chair insurance from Fish.

I have to give them their due, they were fabulous. First things they checked were

  • are you somewhere safe? not in the road, etc? (yes)
  • do you need any medication or medical treatment imminently? (nope, got it with me)
  • is it raining? (yes)
  • do you have a rain canopy? (nope)
Then it was details of what had happened to the chair, a good description of where I was and where I needed to go, and a couple of minutes wait for a call back, where I was told they'd sent a motorcycle recovery firm who'd be there within the hour.

For the first time I've ever used something like this, it was remarkably easy and straightforward. My parents arrived in their car (which won't take my chair, sadly) and took the dog back to my house. My dad stayed with him, and my mom brought the car back so I could sit in there and wait, which was a good job because it was absolutely bouncing down by then. I gave up, threw my waterproof coat over the controller and frayed cable, and just watched the rest of my chair get soaked from the car.

Motorcycle recovery guy was very nice, ingenious and bloody strong as well, and a combination of those three and me dithering about kicking casters into alignment got the chair into the truck, up the road, second left, to the top (really, I was *that* close to home) and then out and up my ramp into the house. I did offer brews and biscuits, but he declined. Which, given how scatterbrained I was coming off is fair enough! I don't think I'd want sustenance prepared by someone who's just struggled to tell you her name, after asking you to repeat the question twice. Brainfog + sensory processing crap + autism + super sudden change of plans + compulsory telephone calls = a very stupid Jaime.

So, back to this whole universe-teaching-me-a-lesson thing. Well, I knew I couldn't get to work without my chair - the bus stop is *way* too far to walk, and the one at the work end of the journey is even further away from my library. And I couldn't have worked once I got there (there is one department that could loosely be considered a desk job, but they won't let me do it at all most of the time, let alone full-time til my chair's fixed).

So, Monday morning, I'm making more calls. To the insurers, Fish, in the hope my accidental damage cover will pay for repairs. To my wheelchair wizards at Mobility Choices, to see if they can quote me for repairs and order the parts. And to work to say "I can't come in, my wheelchair is broken".

As an aside, an interesting point arises out of that last one - what type of absence does it go down as on the system? It's not sick leave, I'm not sick. It's not dependent leave, my wheelchair is not my dependent (rather the opposite really!). It's not compassionate leave, no-one has died and while I do find it surprisingly upsetting to be wheelchair-less, it's not going to count! I suspect they'll try and call it sick leave, which will be an argument in the making as I think it'll put me over the first absence management policy trigger (i.e. we're not saying you aren't/weren't sick but you must take less sick leave!).

So, I have an extra two days off, maybe longer. There's no way it's going to be sorted by tomorrow so I need to find somewhere that can rent me a chair for a week. I'm still hoping they'll magically have all the parts and a spare slot this afternoon, but I know it ain't going to happen.

Normally, I'd be thinking "yay! time off!" and I was, to start with. Then I started thinking about what I'd do today.

I could go swimming! but I can't get to the pool without my chair, nor can I manage to move about inside the building if I get a taxi, added to which no taxi driver will want this job - it is literally less than a minute's trip.

I could return my library books to <local branch> and get some of this paperwork digitised and shredded! except I can't get to the library, which is right by the swimming pool. I also can't walk up either the stairs or the ramp to the entrance, and I can't stand at the photocopier to do my scan/email/shred routine. I can't sit at the photocopier either - no room for a seat and I couldn't see or reach. Not to mention getting a large pile of paper there when I can't even transport myself.

OK, this isn't working. I'll carry on tidying and de-junk-ing the bedrooms. Great plan, small snag - next thing that needs doing? Take a big box of stuff to the charity shop, and some old furniture to the tip (to go in the furniture reuse container, not to be destroyed/landfilled. I take my recycling seriously!). OK, I couldn't do the latter *with* the chair, but I could have done the former, which would have given me room to work around the extraneous furniture.

Er, there must be something I can do. I know, I'll bake! Except that we need eggs for that, and I can't go out to get them. Nearest shop? Less than a minute's walk for husband. Nearest supermarket? Less than ten minutes. Can I get to either? Can I hell.

I'll take the doggie for a walk. Um, except, I can barely stay on my feet to take him in the garden because my left ankle's still uber-trashed from that last bad fall, and I'm already so tired I'm using the stairlift if I have to go out, both to go down and come back up. Normally, I'd only use the stairlift for coming back up because it's slow and noisy and I can usually manage down the stairs, because I know I'll be getting into my wheelchair at the bottom and won't have to walk any more. 

[We live in a first floor flat with a stairlift, wetroom, one bedroom and one box room that's become our office/my workroom. It's not possible to get wheelchair accessible housing that's big enough for two people to live in while under 55, in my area. Everything suitable has a minimum age of 55, 60, or 65 and refuses to make exceptions for someone under that age regardless of need. It's disablism at its finest, but I can't manage to make them budge.]

So basically every useful or entertaining thing I thought about doing today? Anything that requires leaving the house? is basically out, because I don't have my powerchair to use.

So, next time I start tormenting myself with "you don't need that powerchair", I'm going to come back, re-read this, and tell my inner doubter to go forth and micturate.