u/ChronicallyDistress

UPDATE:

For anyone finding this later dealing with the same issue, the wheelchair tech consulted with a colleague who told him this is actually normal and should resolve within the first twenty charges. And to basically never trust the percentage shown in the joystick display too much.

But the chair is fine, and after this charge, I get to use it!

ORIGINAL POST: I received my Permobil M3 today (yay) but the joystick is not displaying the battery charge drop reliably. I'm going to check in with my technician tomorrow, but in the meanwhile, I'm wondering if anyone has experienced this before.

When I got it, it was at 90%, but at some point it jumped and said 100%. Then when driving it around, I noticed that it was jumping occasionally between 90 and 100.

At some point (I didn't drive very far, about 2 or 3 km) it dropped to 80%, but then it kept going between 80%, 90%, and 100%. It has not shown other numbers. So nothing in between those round values.

Has anyone experienced this with permobil or any other powerchair? Any thoughts on what it could be?

I'm scared to drive it now, because I don't want to not know when I'm close to draining the battery.

Going out of my mind stuck in "waiting mode" in my brain.

Any words of wisdom, hope, or entirely unrelated stories anyone is willing to share to keep my notifications dinging and deliver that jolt of dopamine to help me stay distracted?

I'd love to hear about your favourite spacefaring sci fi books, adventures you go on in your wheelchair, what you're planting in your garden or on your balcony, the thing you did lately that you're proud of, or anything you might want to share.

I'm in PEM. I had fully convinced myself that the ME diagnosis was wrong, but here I am.

My body is shaky and weak.

My heart rate gets too high too fast when I move around (and I keep getting distracted and doing things, forgetting I will immediately feel the consequences if I do).

I'm sweating bullets some of the time.

Can someone with capacity give me a few simple steps to take right now to help end PEM as quickly as possible? I know I need to rest and stop as much as I feasibly can.

Also any reassurance would be helpful. I'm so scared.

I have a doctor's appointment today and I'm the least prepared I've ever been. I almost don't even care.

We need to make med changes and the doctor doesn't really understand my condition despite being the one who diagnosed me with it and I don't even know if I agree with the diagnosis.

How have you dealt with medical burn out? I'm so tired of going to the doctor.

Hi there, I've got a doctor's appointment coming up and I'm super stressed. This is a doctor who diagnosed me with ME/CFS and recommended GET and CBT. When I pushed back with links to scientific papers that show those are both dangerous, she got all wishy-washy but insisted she was right by moving the goal posts and basically redefining the terms.

She is also the only doctor treating my dysautonomia.

I live somewhere with nationalized ("free") healthcare, but no choices. I can't just go get another doctor, I have to work with her if I want treatment for my symptoms. So please don't recommend a second opinion.

I'm not fully convinced I even HAVE ME/CFS because I'm not convinced that what I have is PEM because of the lack of delay (which I know can happen). What I had definitely seemed like instant PEM a few months ago, but it hasn't really happened since and my energy and other symptoms have improved though certainly not to a healthy level.

But I also know that I've been pacing, I even got a motorized wheelchair to help with pacing and pain, and so it is possible that I'm just accommodating myself well enough to avoid PEM?

Anyways, I just wanted to be heard. I'm scared about this appointment. I'm scared I won't be heard or helped. I'm scared I can't trust her judgement.

Hi folks, I just found out I'm going to need a colonoscopy. I'm a newer powerchair user and I'm ambulatory, so I'm trying to decide if leaving the powerchair at home and getting a porter or the person accompanying me to push me in one of the hospital wheelchairs is a better option, even though it does mean a loss of some independence while there.

My concerns with the powerchair are:

1. Leaving it alone while I'm undergoing the procedure (I have not been able to get a clear and comprehensive answer from the hospital about where I'd leave it and how it would be kept safe, and I'm not satisfied with the level of accessibility of this particular hospital)

2. Being too drowsy after the procedure to safely drive it around

3. If the procedure runs too long, and I miss my booking for the accessible public transit van or alternatively it goes early, and I'm stuck waiting for it with the person who is accompanying me (it's close enough I could roll home with their company, but I don't know if that would be safe or allowed).

For those of you who've had colonoscopies, how drowsy were you when they released you from recovery? How did you keep your powerchair safe and untampered with? Would you have felt safe to roll home a 20 minute roll (which come to think of it will be longer with someone by my side, since I'd have to slow down for them). Would you have left the powerchair (or other wheelchair) at home if that had been an option for you?

I'm also worried about being perceived as not a wheelchair user and being asked to get up and walk distances that might present a problem for me.