Being All Askew

[davidgillon]

So my wheelchair fitting included the wheelchair tech confirming that my pelvis is rotated right side forward and elevated on one side (he didn't say which), to the point my right knee sticks out an inch in front of the left. I actually suspect I know what's causing the twist, I've a habit of sitting with my left foot tucked under me. Ironically I do it because it makes me feel more stable and offloads my SI joint. I've been thinking some more about the problem in the past couple of days, firstly in respect of whether I need to do anything about it and secondly in relation to the chair.

Bendy types, any thoughts on the general implications? Flag it up to GP given all my sitting issues? Or just file it under 'Bendy bodies are borked'? One of my bendy friends on FB pointed out it could be scoliosis, which might make it something I should get looked at. I've had functional (i.e. non-structural) scoliosis in the past, and it clearly gets worse at times with things being pulled up on the left (I got home from one train journey last year, lay down to stretch out and discovered I'd suddenly acquired a 3" leg length discrepancy (there's normally a very slight one), which faded away over the next couple of days. On the probably-not-scoliosis front, the tech noted my shoulders were level and my navel on the centreline (well, when sitting anyway).

Wheelie types, any thought on the implications for chair/cushion? I asked about cushions, given they had me sitting on a chair* that happened to have a Jay Lite on it (and trying to plant the idea he should specify that), and he said they'd probably give me something he called a 'pudgy', which sounded like your basic memory foam block. I'm going to argue they should at least be specifying something contoured, but all thoughts gratefully received.  I will buy something better if need be, but I'd prefer to argue them into providing it (he did say I could come back to them if I was having issues). I think the difference between us on cushions is he's only concerned with the cushion as a means of preventing pressure sores, where I'm a low risk, while I'm looking at it in combination with the chair as a combined system to avoid irritating my bendy pelvis, where I'm demonstrably very high risk, but not for something that's one of their performance metrics.

* Annoyingly the Argon they'd said I couldn't have.

** And even with the Lite I was having some pain sitting, though that was something that had appeared before I transferred onto it.

Comments

[kaberett]

I'm honestly really perplexed about this -- I'm not a full-time chair user as you know, so sores weren't ever an issue for me; as far as I can recall we just talked a lot about how I needed lots of postural support because of fatigue and pelvic pain issues.

[davidgillon]

The OT at the original appointment dismissed higher back support straight off - I mentioned your Jay back and headrest and the response was a blunt "You don't need a headrest". She was willing to be argued into going slightly above the base of shoulder blades for support, but that was about it. The tech this time was much the same, though we didn't really get into higher back issues (he was actually much more willing to accept I subluxed a hip due to the chair flexing, the OT was inclined to call it neurological). Either I'm not making my case very well, or they think the rigid frame alone will fix all the issues, or postural support isn't something they prioritise. I've now spent three hours sitting in their waiting room and not seen any customised backs or seats go by. In fact the XLT will be better than any of the chairs I've seen people using so far. Admittedly most of the users I've seen are amputees attending the limb centre, and they get the same crappy Lomax 8 I'm moving up from.

Just the rigid frame is going to make things much better, I was using the GPV with the cheapest of 1" thick cushions and it was still a marked step up going over uneven pavements, bricked roads and the like. OTOH I think it's still worth raising the pelvic issue and making sure I get an appropriate cushion to support me adequately. One of my FB friends has pointed out the appropriate cushion is different depending on whether the problem is permanent, or something that can be fixed, so I guess I'd better book an appointment with the GP and see what she thinks.

[kaberett]

It might, of course, simply be the case that I was doing all this in 2011/2012, and we've had another four years of Tories since then. :-(

Jay headrests ARE a customisable, readily-removable add-on, so you might at least be able to get one of those if they can be talked into doing you proper seating. (Alternatively, my J3 back is actually 2" wider than I want it to be, so if it's useful for you to bear in mind -- I'm going to be trying to get a narrower one when I hit five years next year, and would be happy to pass the current one on if I successfully talk them into the thing. This is one I can probably sell them on with relatively little difficulty, as "I've changed shape in the interim" and "I've already bee assessed as needing one of these and have had more diagnoses"; it's a little battered but still entirely functional.)

[kaberett]

(Plus, of course, if you show up to a *subsequent* assessment with *my* back on and just... don't... tell them... that you acquired it yourself rather than having it prescribed, they're very likely to decide that you have already been assessed as needing one so will just write you the scrip for a new one if required. Plus or minus Tories, of course.)

[davidgillon]

{Muttley snigger} :)

[davidgillon]

The Tory factor is a definite possibility! Though it may just be it's a different Wheelchair Services and there's massive variation. It's still massively better than some I've heard of, such as the one that would only do a friend a 16" cushion, when her chair is 14".

I've actually been watching for Jay backs and cushions on eBay for the last few weeks, though I'm absolutely not buying anything until I have the chair in hand and get a better feel for whether it's meeting my needs or falling short. There's a handful of J3s gone past, but mostly without the mounting brackets and not deep profile.

I'd definitely be interested in your J3 if I haven't sorted something out by next year and you manage to talk them into a better one (fingers crossed for that). I've tried it and we know it pretty much fits me. (I'm now officially measured at 16" wide by 17" deep, BTW).

[untonuggan]

i do the same thing to stabilize my body (partly because my legs are super short and don't reach the floor, ever). don't really have a solution? tho for my desk i just stuck an ottoman underneath sit with my body not how they told me to and it's way more comfortable. (i'm like...half cross legged? but my legs aren't under me/squashed.)

my PT thinks i have pelvic floor issues. i dunno. i am sick of PT. the exercises hurt like hell and i should probably do more. i just am sick of going to PT and dealing with physiotherapists.

[davidgillon]

I like the ottoman solution!

I sit the same way as you if I pull both legs up, but if it's only one I'm generally sitting on my foot.

[kaberett]

(my ankle is in fact currently screaming at me because I'm sitting on it, yes, with my right foot flat on the floor; I'm trying to put off the moment of moving it because (a) it will briefly hurt more and then (b) I'll have to do the last remaining physio set for today...)

[davidgillon]

Sympathy!

[kaberett]

(ye-aaaaaaaaaaaaaaaah. I am currently very much doing the non-compliance-is-a-social-skill thing, of going "that's not going to happen. given that it's not going to happen, what would you like me to aim for?" and even so I'm spending way the fuck more time on it than I want to. the upside is that it MOSTLY DOESN'T HURT, apart from the ones that are supposed to... :-/)

[davidgillon]

You definitely get the feeling physios think you should dedicate your life to their ideas, don't you!

I love my pain management physio (who I'm not currently seeing, thank god), but she's not a chair fan and I got the definite feeling she wanted me off crutches as well - not happening, crutches were the get me home solution for when both hips locked up, which they did regularly. When I was still working we'd reached the point where she wanted me changing chairs and doing stretches every 10 minutes. And the work is happening when?