It’s all gone bit pear-shaped…

In terms of travel, that is.

(NB: I wrote this over two days. If you come across a discontinuity anywhere, that’s why.)

On a more immediate note I started this yesterday (Monday), and it’s now Tuesday, late morning, and things are pretty scary. I just can’t function at all. I’m trying to finish this but it’s taken me hours to add a final couple of hundred words – I keep drifting off and my breathing is very poor. It’s not often my condition frightens me, but it does today. I might have said that – I know I typed it somewhere this morning – I’m just too exhausted to re-read this to try and find it. Apologies if it’s here twice.

Back on topic, I’ve been a wheelie for nigh on 30 years (had my first NHS wheelchair assessment and issued with my first chair, in 1986; since when I’ve bought my own), and when it comes to powerchairs I very much prefer the midwheel-drive configuration rather than the conventional rear-wheel drive. This, for example, is my current powerchair, a Shoprider Lugano and, next to it, my current manual, a Quickie Life (except that mine has standard wheels – the price premium for black wheels and handrims was absurdly high and, of course, handrims always get scratched).

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While this one, below (really is a dire machine, but I got it when I was broke and it was all I could afford), is a Betterlife Aries.

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This one isn’t mine – it clearly belongs to an idiot who has put their full weight on the controller when getting in or out, and bent it! And believe me, that takes some doing – it might be crude and basic, but it’s robust.

Anyway, I swear by midwheel chairs. They are extremely manoeuvrable, which makes them perfect for indoor use and – pick the right one – they’re great outdoors, too.

But, on my last hospital trip last Tuesday, I found a fatal flaw.

I don’t normally take my chair in taxis. I figure it’s for transporting me, not for being transported, and it can be very pleasant, just trundling around in the sunshine, but as my health deteriorates (and hostility towards disabled people increases – I’m too weak to defend myself these days), that’s an increasingly unattractive option so, last week, I got a taxi to my hospital appointment – and found that the buggerdly thing wouldn’t go up the ramp!

It should have been obvious in advance, but when the front casters hit the ramp, they lifted the drive wheels off the ground, and brought me to a halt. If I could have taken a run at it, momentum would have carried me past the sticking point, but the driver wasn’t having that in case I overcooked it and slammed into the opposite door. OK, I take his point – some people in powerchairs shouldn’t be allowed out, there’s no getting away from that (you only have to look at the damage in my building caused by my neighbour), but I’m not one of them. No way he could know that, of course.

So, with brute force and much swearing we got it in, and again on the return leg, but the driver clearly wasn’t amused (you got a 25% tip on a £20 fare you churlish bugger – deal with it!), and, frankly, nor was I.

Then I remembered I still had the Aries, folded up and stashed in the hall cupboard, and dragged it out. It might be crap, I wouldn’t trust it on what used to be a regular 8-mile round trip to Sainsbury’s, but it WILL go in a taxi, and that will open up my life enormously, because I’ve been housebound since the summer of 2012 and it seems clear that the only person who can change my shut-in** status is me (depending on others isn’t going well). I’m not sure how that’s going to work out, yet, but the first step is to resurrect this old powerchair.

**A charmless Americanism which describes the brutal reality rather more aptly than, I think, housebound does. Shut in is what I am – I haven’t been out of this building, except to go to the hospital, since September 10, also for a hospital appointment. Before that, the last time I escaped was to be admitted to hospital in August.

The chair’s tyres still hold air, which is a bonus, but the batteries won’t charge. I was tempted to try the batteries from my scooter, but it’s a lot of work just to get them out, especially with only one good leg (and, eventually, I’ll have only one leg, period, which is why I’m looking afresh at wheels**), with no guarantee they’d even fit, so I’ve ordered new ones.

**Over the past week my ability to walk (just around my flat – nothing more ambitious), has gone from painful but doable to agonising and impossible. My lymphoedema is staging a comeback (legs swelling), my leg ulcer is getting bigger and more painful by the day; it’s also heading in a new direction, downwards, and will soon reach the sole of my foot, at which point walking will become impossible. My COPD, too, has taken a turn for the very much worse. This morning it took me over an hour to be able to breathe normally (normal for me, that is), after walking the 10 yards or so from bed to here. In September I was concerned to learn that my COPD was Stage 3, with only Stage 4 – End Stage – to go. And that feels closer than it should.

That was at 07.00. It’s now 08.55, and still every breath is an effort, even after megadosing with my inhalers and chugging Oramorph for the pain and codeine linctus for the cough (and they reinforce each other, too), and I need to see if I can at least manage a shave today, so I’m off to the bathroom – I might be some time…

I’m back, and the nurses have been (I wrote this yesterday morning).

Not seen them for over a week (they tend to rotate the teams weekly). Told them about my meeting with the vascular surgeon, that the surgery was going to happen, but I didn’t know when yet.

They seemed genuinely upset by the prospect. I got the feeling they expected me to blame them but, really, it’s no-one’s fault. As I’ve said before, ulcers come in two main types – those that heal and those that don’t. Guess which one I’ve got.

I’m still surprised that the surgeon made no attempt at all to talk me out of the surgery, which is indicative of the seriousness of my situation, I suppose. I also believe that it could have happened last year had he and my GPs paid more attention to both me and the nurses.

I think the nurses expected me to blame them for my failure to improve (they view the amputation as an undesirable and drastic step – I see it as the only way out of an untenable situation), and while it’s true that my condition DID improve when I took over a lot of the work involved in re-dressing (partly because I have more time to do it properly without further hurting or injuring myself), the nurses are pretty much limited in what they can achieve. I have, though, as I said, been let down, and badly, by my doctors. GPs, in particular, have never even looked at my legs because, as they said, “they’re horrible”. Which is true, but I wonder what they think they’re like to live with?

Anyway, Sainsbury’s have delivered my groceries and my batteries have arrived too, so once I recover from whatever the hell is wrong with me right now, I’ll see about installing the batteries. Don’t think it’s going to be today, though.

Watch this space…

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