So nice to get your responses.
Thank you
@bobbler !
I wish I'd known that. It's bollocks of the first magnitude. *
Powerchairs aren't really about relieving pain, or even removing effort. At best they can offer a compromise that's a bit less exhausting and risky than trying to walk.
It depends on the impairment, but travelling in them isn't necessarily less painful than walking. For me it's a lot more painful, it's just that I can't keep the walking thing up for long enough to actually get anywhere. Hobson's choice.
Oh I think I just expressed myself poorly. What I meant and what they were referring to was the extra arm/shoulder/neck pain I got from the joystick, as in this bit of my previous message:
The other thing I didn’t quite realise before I started trying out powerchairs is that driving a powerchair means continuously pressing the joystick. There is no alternative. (Well, you can control it with your head or mouth or foot instead, but continuous activity is required for all.) And the joystick is on one side. You can have it mounted on a tray in the middle, and I tried one like that. It was good in that I could alternate using right and left arms, but my arms still got exhausted and my neck got sore quickly.
On the test chairs, I wasn't using the soft-throw joystick, I wasn't in comfortable seating for me, and I wasn't in a chair that was the right size for me (I'm really tall), so I think it was reasonable that they thought that at least some of the extra pain I was having would be sorted by the chair. I knew myself that I was likely to still have issues, becase continuous or repeated pressing of keyboard buttons does the same to me - the CTRL button, the down arrow, lots of copy/pasting - even though those buttons obviously require very little pressure. Doesn't matter. I can't sustain it. But I did think that in "my" chair, I might get it down to being more like the computer in terms of arm exertion.
Anyway. Let's hope you do eventually get some use out of it! Depending on what's causing the pain (sitting position, operating the controller, going over humps, etc), you may find you're able to mitigate some of it through learning and adapting to using a chair. But that relies on you being well enough to use it in the first place, of course.
Yeah, I hope so too. It's the continuous pressure required to operate the joystick. Am not holding my breath given my difficulty with keyboard buttons (see above), and that it's already soft-throw (apparently requires only 40% of the pressure required for a regular joystick). You can go softer again but that was really hard to use. But I do think there's something about the armrests that could be optimised more. Maybe when they made them long enough for my long arms, they ended up too long? So I will definitely be experimenting (if I can) and getting some adjustments.
A nice further spanner in the works is that what was my good arm is now having more trouble. I kind of just have two bad arms now!
Hello, I am sorry to hear this. But it does resonate for me. I have an indoor chair but I haven’t been able to use it much because it wasn’t adapted well for me. It’s in the shop for alterations now.
I'm sorry
@Ash , it's so disheartening, isn't it? I really hope alterations make a difference. For what it's worth, I was worried because the test chairs were so uncomfortable, but my actual chair, made to my very exacting requirements, is very very comfortable.
But unrelated to the above the movement made me nauseous- Mid Wheeler, for small turning circles and travel sickness!- and sitting hurts my spine and I can barely balance my arms on the arm rest and I couldn’t hold my body upright especially my head, the effects of all this and the visual effort of adaptation to my surroundings for a mode of moment machine like, and the concentration to drive through tight spaces, is a lot. I had PEM from this.
When my chair arrived it really spun. Like teacups at a fairground when the bloke gives it too much welly. They were able to do some jiggery-pokery on a computer to get that right down to a minimum, because I'd be like you, very prone to travel sickness.
It sounds like really big exertion for you. I didn't have the issues you have with sitting or balancing or body position or head position but sweet Jesus, the PEM. I think for me, orthostatic intolerance is a big contributor to the PEM.
But don’t despair. It sounds like you were doing rather a lot to start with. Maybe try five minutes twice a week or just sitting in the chair on tilt for a few minutes every so often. Only when you’re feeling up to it.
I know, what was I thinking? I was reading about people practising for hundreds of hours to be able to steer properly and somehow thinking I needed to do a small fraction of that, despite not being able to. The reps also just couldn't wrap their heads around the reality of ME/CFS. I think I need to start more like once a week only on good weeks.
Ps, I got tired and forgot to add the chair was really great for POTS even fully upright and really good for dizziness, breathlessness chest pain and confusion that comes on when standing. That’s why I think it’s worth persevering.
Massively reduced aerobic activity seems to really help me with PEM. That’s inside the home too like you.
That's great to hear. I don't have POTS but I do have prominent OI of the delayed postural/orthostatic hypotension variety.
The difficulty is that using the chair won't reduce my aerobic activity, because my "range" is two rooms (plus an ensuite off one of them), occasionally popping head into a third and the powerchair can't go between those rooms. The corridor is too narrow and the doorways are too small and close together. So the goal of the chair was always ambitious - to increase my range. Obviously on days when I use it, I will need to reduce my other activity, but there isn't much to reduce without going from bed-based to bedbound.
Really hoping your altered chair will be easier
@Ash
