Does anyone use an ultralight 'active'/rigid wheelchair for POTS?

[Greyhound]

Does anyone here use an ultralightweight 'active'/rigid wheelchair for POTS? I've searched the forum and can see that some people use a wheelchair but need to be pushed. I have a folding wheelchair which is 12kg but can't propel myself far, partly because of the weight and wheel and backrest position and partly, I think, because the frame flexes a lot, so I need to be pushed most of the time, even indoors. I need to get back to work as soon as possible but really can't walk or stand for long at all without getting exhausted. I also have a mobility scooter that I bought secondhand off eBay which is fantastic but will probably be too cumbersome to manoeuvre around at work. I could get a powerchair but they're very heavy to transport and I wouldn't be able to take it anywhere but work.

I'm wondering whether anyone else here uses an ultralightweight 'active'/rigid wheelchair to propel themselves around to help their POTS or would even that be too much effort?

I feel stupid asking because it seems that lots of people with POTS manage without a wheelchair, even if they faint a lot, which I don't. But at the moment I would not be able to return to work without some kind of wheelchair and I'm desperate to return.

[Greyhound]

I really don't know what to do. I need to go back to work, possibly as early as next week. Should I order myself a rigid wheelchair and hope I have enough energy to push it or should I get a powerchair? Do people here have enough energy as long as they're sitting down or is it still a struggle? I keep questioning myself: Should I use a manual wheelchair to stop deconditioning completely or should I use a powerchair to conserve energy? What are other people's experiences?

I'm feeling lost and desperate.

[Guest KiminOrlando]

I see nobody answered you, so I will give it a shot with my very limited knowledge. 

I don't work any more, so I don't have this problem. I could sit when I worked, so if I could actually make it to work, a wheelchair wouldn't really help me. What kind of job do you do that requires constant mobility?

I have a regular manual wheelchair that is too heavy for me to get out of the car by myself. I can't go anywhere unless I can walk it or the place (grocery store) has a motorized one that I can use. In theory, I could use the manual one on flat, hard surfaces for a short time, but I would not last an hour. If my insurance would pay for it, I would like a motorized foldable scooter that is light enough for me to get out of my trunk, but that isn't going to happen. I looked at them myself and decided it was a waste of money right now because to get one with enough power to last for what I want to do, the battery would be so heavy I wouldn't be able to lift it.

Can your job make any accommodations so that you don't have to be so mobile or make it so you have more room for a motorized scooter? I think you may have trouble with a manual wheelchair if you work 8 hour days. Can you rent different types of wheelchairs to see what works best for you?

There are no easy solutions, but I hope you find the right one for you.

Kim 

[Greyhound]

Thanks so much for your reply. I work in a college library and there's a lot to do that involves walking round, such as getting up to check stock, helping students find books, journals etc. It doesn't sounds like much but there's a lot of getting up, sitting down, getting up again, moving around, etc. All I can say is that I get very fatigued doing it. Trust me, I tried to continue for as long as I could. Standing up seems to make me feel the worst and I can't do it for long at all. Also things like just getting to and from the car park are very fatiguing for me right now but I don't know whether that's because I'm upright or because I just can't do much movement at all so I wondered what others find with themselves in this respect.

In terms of space, the workroom and parts of the library, especially around the enquiry counter/issue desk are really tight and can't easily be moved around at all.

I'm meeting with my manager and HR on Monday and we're going to discuss accommodations.

[Guest KiminOrlando]

I see. Well, can you sit in a regular chair in the work room and at the issue desk and leave the motorized scooter sitting nearby when you need to stray from those areas? Maybe in the tight areas of the library someone else could handle that and you cover a more accessible zone? 

I totally understand needing it to get from your car to your job. I would need to rest once I finally made it to work. This baffled my boss. "But you haven't done anything yet." Meanwhile, I felt like I had just climbed Mt. Everest. 

The idea that I could walk confused a lot of people. If I COULD walk, why on earth would I need a wheelchair? Wheelchairs are for people who can't walk. I wanted to say, "Give me 10 minutes and you'll see me not be able to do a lot more than just walk." 

I have to keep my feet elevated or the blood pools and the BP drops. Are you going to be able to sit with your feet down all day?

[Greyhound]

It's great to be able to talk to someone who understands.

The library in general isn't great for wheelchairs in several places. Before I even thought I might ever need a wheelchair, I pointed this out more than once but in their eyes it's accessible (you just have to go convoluted routes and shove chairs and things out your way to get where you want, which is still not good). If I kept the scooter nearby, I would have to keep standing up to get to it. That means for every enquiry my pulse would still go up to 110-140 twice just getting to it and back again afterwards. I'm guessing this will not help the fatigue.

Whilst I've been off, colleagues texted me to see how I was doing, which is nice, but when I told them that I'd got a mobility scooter I don't think they got why, even when I'd told them I can't walk or stand for long. When it comes to using any mobility aid, I just think the question to ask oneself is: 'Will using it make life better for me than not using it?' If the answer is yes, use it. In my case it's got me out the house when I wouldn't have been able to go out before and I really think it's the only answer available at the moment to get me back to work.

Re keeping legs elevated: I really don't know yet. I ought to investigate. Maybe it's why my legs always get tired even sitting at my desk or driving. Duh. Can't believe I didn't think of that before. Like really, even though I've been reading loads about POTS. My brain's not working properly at the moment lol

[Roxy]

When I was going to college I had an issue similar to this at the library and computer lab. I had a wonderful professor who told me to go to the disability assistance office to see what could be done to help me. In the United States we have the ADA laws so the university had to make accommodations so I could go to classes and work on campus.  I worked in the library and computer lab. Does the U.K. Have similar laws?