I am oddly distressed by my personal situation this week. It probably doesn’t help that I had a blood test yesterday, although I was pretty unhappy before that.
To recap: I have been a wheelchair user for roughly the last 6 years. About 6 months or so into my relationship with Will, I found it harder to move across a room without injuring myself or being downright exhausted. Ehlers-Danlos Syndrome came down on me like a ton of bricks. I knew for a long time that I might need a wheelchair one day, but I still thought I had more time. I still pictured myself doing more with my life. I was wrong.
Wheelchairs are expensive. You can get them on the NHS, but the wait I was given was ridiculous, I was seriously unable to move very far but I was basically going to be stuck in place for months. So we had to look into privately getting a chair. We could not afford most of them, they are thousands of pounds. You can end up paying more than £25,000 for a wheelchair. It’s outrageous, but at the same time, I understand that disabled people are a minority, and so if manufacturers did not charge these sorts of prices per chair, they would not stay afloat. But disabled people never just need one aid. We need ramps and stairlifts and other accessories to go with them, and the prices for those are each very eye-watering.
To get around this, we had to settle for incredibly cheap and flimsy chairs that cost about £200. These are not good wheelchairs; they are wide and clunky, they weigh too much on their own, and so are hard for everybody to self-propel, the castors and other parts are often plastic instead of metal, they snap and are irreparable. Basically the classic “hospital wheelchair.”
My first chair, Ignatius, was exactly like this. I’m not sure what model he actually was. One of his castors broke in not very long. And it did so in such an odd way; Will would be wheeling me along in a straight line and suddenly the castor would get temperamental and make me shoot sideways. I still used him as my upstairs wheelchair in our last house, but it was very difficult to get him from one end of the corridor to the other.
So I had to replace him with another chair, we got another £200-ish one, which seemed better. This chair was named Percival and he was a Z-tec Lite. The castors were slightly better structured but still, they are plastic, one of them is super lopsided and I expect it to snap soon.
Despite being marketed as “extremely lightweight,” like other cheap wheelchairs, he just isn’t. I’ve never been able to self-propel him very far, and to live my life I needed a powerchair.
My next chair was Calpurnia, an Enigma Energi. She was much more expensive, even second-hand. I tried to crowdfund for her, but I didn’t get very far and my mother wound up giving me most of the money.
Calpurnia gave me a lot of new freedom. But she was also very wide, heavy, bulky, and not foldable. A lot of powerchairs, Calpurnia included, are marketed as foldable, but you actually have to haul the huge battery out (not possible for someone like me) and unscrew the frame. It would probably take you about an hour to do each time, which is not feasible if you are getting in and out of a car.
Calpurnia was too wide to fit in through our new hallway when we moved house in Southampton. We got her inside and knew we weren’t going to be able to do that again. I was sad about it but I had to sell her. I got £300 for her, which I used as a deposit on my next wheelchair.
Isador is a Sasaki iPower, and seemed like the perfect chair at the time. A chair with large rear wheels, that would get me across difficult gaps, but was also powered?! And actually foldable, because there were two small batteries behind each wheel, instead of one giant one in the middle? And in an emergency, the wheels could be disconnected and the chair could be self-propelled?
At £3,000 it was well out of my price range, but you could pay for it with monthly deposits of £75, which sealed it for me.
But Sasaki iPowers have unmarketed problems. Like the fact that the motors are super weak, and so there is a “safety feature” that makes the chair cut out any time they have to exert themselves slightly. When I first got the chair it was cutting out because of slight bumps on the pavement and I was in tears about it. It turns out the chair also had battery failure, which was not helping, but even when the batteries were replaced, things didn’t improve that much. It can’t cope with climbing kerbs the normal way, because the motors die, so you have to spin around in the road and reverse up.
I actually have a video about how much my Sasaki iPower and the streets of Southampton do not get along with each other.
Those pavements are bad for all wheelchair users, there are some that even mighty Calpurnia couldn’t manage, but nonetheless.
I wish I could tell you that this chair was the perfect solution, that you get the best of both worlds, a chair that can be self-propelled and driven when you need it, but it’s just not true. When we moved to Andover, Isador could not cope outside AT ALL. I’ve been using him as a powered indoor chair here, which has been nice, allowed me to carry coffee back through to the living room easily etc., but since he broke on our camping trip, and Sasaki have utterly failed to get back in touch about having him repaired, I haven’t been able to use him at all, he’s way too heavy and bulky for self-propelling. Even if they refuse to fix him (they are claiming the warranty has ended, which doesn’t sound right to me but I am too ill to go digging through paperwork right now), I am stuck spending £75 a month until I have spent an entire £3,000 on a chair I will not be able to keep using.
Will very generously spent £400 so that I could have an ex-demo Travelux Corrado from CareCo. It is not perfect, and could do with a good servicing (the battery can barely cope with a trip to the hospital and back). But the chair, which I have named Bartzina, has survived Andover so far. But it’s bloody heavy, I can’t get it out the door myself (and we still don’t have a ramp here). It also definitely can’t fold to go in the car, because of similar reasons to Calpurnia, and even if I could take this chair camping, when the batteries run out, that’s it, I can’t push myself anywhere.
I’ve tried using Bartzina indoors because of the situation with Sasaki, but although she’s actually more compact sideways than Isador is, it’s still difficult to move around, and there’s nothing I can do with her when the batteries are down.
So here we are, back to Percival. He’d been living upstairs in this house; the distance to the bathroom is short enough from our bedroom that I usually don’t need him unless I’ve really buggered a leg or I feel really ill. As of today, he’s downstairs being used as my default indoor chair again, even though I really am expecting his castor to snap.
Self-propelling is painful and exhausting, but part of me really wants to get used to it as it might also help with my weight. My weight ballooned after I became a wheelchair user, even though I self-propelled for a while. I want to try self-propelling around the road in small increments, seeing if I can build my fitness up, even though I know that’s never worked before 😖.
The solution to this could be a genuine, good-quality manual wheelchair. The ones that cost thousands of pounds. The ones that are thin and tiny and usually have a compact footplate instead of separate, jutting footrests. The ones that weigh virtually nothing at all, and so you only have to deal with learning to push your own weight.
I’ve seen other people with Ehlers-Danlos who self-propel full-time, and I’ve always wondered how the hell they manage without dislocating their elbows and wrists all day, but the answer is probably that they have these tiny weightless chairs, and the wheels on those are also set further forward so it’s not so straining on the shoulders and chest.
Sadly I had my heart broken in regard to one of these chairs recently. There was a Kuschall Compact on eBay, a chair that normally retails for thousands, for just £149! And even though that’s a lot of money at once, it seems eBay now lets you pay in instalments, so I could have had a fantastic lightweight chair (it claims to be the lightest folding chair) for £14 a month. But, I was still talking Will into it when someone else bought the listing. I’m really bummed about it because there aren’t any other opportunities like that.
My ideal chair at the moment, would be a DaVinci Compatta (I would have push-handles on mine so my backpack wouldn’t fall off), but paired with a Spinergy ZX-1 so I could have power when I needed it. I would still feel secure about having large wheels in case I got stuck, but the motors on the powered part would be super decent. Unfortunately I reckon I’d need at least £16,000 for both the chair and the powered thingy.
I can’t visit IADA clients right now; I can’t self-propel for the full interview process, but my folding powered chair doesn’t work. I can’t afford or cope with train journeys, and Bartzina’s battery doesn’t last for them anyway, and she can’t fold into the car of whoever is doing us a favour. It’s a nightmare.
So, in other news, I had a blood test yesterday. I know they really don’t take that much of my blood volume, but I always feel exhausted and awful for a few days.