#new wheelchair user

[gleditsia-triacanthos]

rating ways i get around as a ~1 month non-ambulatory wheelchair user in order of discovery (reblogging if/when i find a new method)

1. a hospital-issued wheelchair. i’ve already complained about these on my blog at length, here’s my last one. i’ve been in a few different ones, so this will have to be my broader takeaways. pros: better than dirty public floors, more efficient than any chair-less method, a couple did have pushrims. cons: not right for any real outings or outside tasks at all (you do not want to be in one a minute longer than you strictly have to), not really comfortable, designed overall to make it easy for caregivers, not really to give independence (i suppose not an objective flaw, more of a reality that didn’t mix well with my situation or personality). 5/10.

2. being carried. this one depends a little bit on the person, but i kind of hate the principle either way. i don’t want another back injury in the world and it feels humiliating. pros: it hasn’t had to happen often (and will hopefully happen less as i make my living situation more accessible). cons: like, everything. not fun for the person who has to do it and not fun for me. depends again on the person and their method, but rarely comfortable, practical, or sustainable. 1/10.

3. “pike” position (sitting up, legs in front of me, sliding my body with my arms). pros: i can be fully independent, it feels good just to move, and i can even tackle the stairs in my parents’ house like this. can be fun on hardwood. cons: not as fast as a chair, friction can complicate things, especially when i’m not wearing full-length pants (cEDS), can’t really reach anything above light switch level (that’s if i strain), can make your arms BURN (especially going up stairs). only really practical inside homes. 6/10, would be rated higher if i could do it in other places.

4. lotus pose. this is basically a variation of the last, except i fold my legs in a specific way. i feel like it reduces drag in some ways? pros: somewhat more sustainable, easier to open doors and go upstairs. cons: harder/scarier to go downstairs (+ friction, can’t do it in public). 6.5/10.

5. custom manual wheelchair. it came only a few days ago, so my feelings could change. it doesn’t quite… feel like an extension of my body? yet? i need to learn wheelies. pros: like everything. so much faster than the last three methods, i can use it in public, designed for long-term use and my body specifically. cons: the accessibility problems that come with a wheelchair, can’t navigate my house as easily, rough on fingers and a shoulders after a while. 7.5/10.

[zebulontheplanet]

I want people to understand, as a new wheelchair user, I need patience. I need help. I need people to be there for me. Being a new wheelchair user is hard. Using a mobility aid is hard. Being new to using it, figuring out how to use it, dealing with the public, dealing with accessibility issues, all of that is hard. I need support.

My mom has been my support. She encourages me to use my wheelchair, she helps me get my wheelchair in and out of the car, she pushes me if i need it, she tells me to tell her if I need help. I appreciate that, and it’s the support I need. Me needing the support of others isn’t failure. Needing support isn’t failure. It’s thriving.

[giantkillerjack]

Can anyone who uses a wheelchair (especially a motorized chair) please explain to me what the process was like to find the right chair?

I live in America and it seems that the doctors just want me to order one online without trying it at all, which seems insane for such a very very specific and very expensive medical device.

In order to find an office chair that didn't hurt my back, I went to every single furniture store in Chicago. So it seems wild that the selection process for something way more expensive and important would be so vague and confusing. I'm really scared that I'll get the wrong one.

How do you get the right wheelchair??????

[disability-can-be]

Took my new chair out on her first trip! I do have one question for fellow wheelers...

Static. How do you keep from electrocuting the people you love.

[roseamoungstthethorns]

Does using a self-propelled wheelchair ever get easier?

I got mine today (25, relatively chunky dude of average strength (no upper body difficulties) but with a balance disorder that means its gonna be needed for longer outings). I couldn't go for more than 30 seconds at a time without getting exhausted, and I'm feeling quite disenheartened.

Hi! Yes it does

I know how hard it is in the start

I recomend going out with someone you can trust to help push you in the start. You need to work up your muscles and you don't want to get stuck out somewhere!

Do short trips. Gradually build up to hills, gravel, curbs, long trips, rain, etc.

If you have ability to see a PT they can help train your muscles. Doing exercises that trains your traps, shoulders, and arms.

I know I know loose weight bs blah blah blah. But the less weight you have to push the easier it is. This can be physically your body, a lighter chair, lighter equipment, etc. So if you don't want to or can't loose weight try seeing if you can make other things lighter.

Also experiment where to put your extra weighted items. Some people like the back of the chair, some like under, some cross body, see what is most comfortable for you and your chair.

A few more small tips:

When you propel yourself think of making circular motions with your arms

Here is the result

A common mistake is leaving hands on wheels similar to this, pushing forward and letting hands glide back on the wheel.

Here it is in practice

Notice how much less smooth this is? And this is inside my own home with a level and smooth controlled setting. Releasing your hands and letting it naturally circle like shown before is really going to make it easier

Learn to pop a wheelie. This is going to make going up curbs etc. take a lot less effort. Do this by pushing forward and leaning back.

You do NOT need to be this aggressive I just wanted to make sure it portrayed on camera what I was doing because I didn't find anything that really showed it to me when I was learning.

Get good comfortable gloves with padding and good grip

If available to you get rubber grip on the wheels and winter tires they are supposed to be very helpful (I'm still waiting on mine!)

[farfalvinder]

Hey wheelchair users, I could use some advice (new wheelchair user)

I am experiencing hammocking/seat sagging for the first time and would like advice about a replacement or insert.

I'd get a rigid seat in a heartbeat since I'm poor and can't afford to replace my seats constantly, but it’s a folding chair and doing that that would prevent the chair from folding up for car storage. So I'm thinking rigid insert is the way to go, but I don't know what I'm doing and don't want to spend my limited money on a bad investment.

How do I get a new seat and how do I use a rigid insert? What should I look for in things like that?

[clatterbane]

Out for another roll around around the neighborhood, and I just had the first random person ask me if I was OK.

Possibly some rite of initiation! ♿🙄

[clatterbane]

I am being pretty hard on vape gear lately! 😩

At least this one was was easily enough fixed.

The drip tip just broke off, and the tank itself is fine. *fingers crossed* (Yeah, I was taking it for a refill.) Even if the first temporarily replacement I stole off something else found doesn't match too well.

The last accident was a tad more expensive. Involving the same mod and tank crashing onto a hard floor, actually. 🙄

Spoiler: the top of the one of the right isn't supposed to look like that!

Since that was my favorite, I ended up just replacing it with the same model. Rainbow color scheme and all. 😅

(Innokin Proton, btw. I really like the small size for a dual 18650 mod and how it feels in the hand, plus the side fire bar approach. I would have said the first one I had was an absolute brick--if a compact one!--but apparently it does have its durability limits. That particular spill onto a laminate floor was evidently enough to do the poor thing in.)

Anyway, no huge deal in either case. But, I am really hoping my clumsy ass gets more used to handling things on and off of awkwardly placed surfaces from the wheelchair pretty soon! Pretty steep learning curve with the freaking dyspraxia, and a pretty bad run even by my usual standards lately.

That's how both incidents happened, knocking things off a shelf/counter while trying to grab them down. 🙃 And that's just breaking vape gear within the past couple of weeks.

(I also demolished a glass jar of peppercorns, on the last trip to the store up the street. 😒 At least that was while awkwardly trying to pack them while Mr. C paid. More a "you bought it, you (immediately) break it" situation that time. ¯\_(ツ)_/¯)

[clatterbane]

Almost pathetically excited to be heading out for my first "stroll" on my own since I got home, on a lovely afternoon!

(At least once Mr. C put down the door ramp and opened the back gate for me, since he has the day off. Planning to call him for help getting back in once I'm there--and annoyed at the necessity for now!)

I've been up the other way, grocery shopping with Mr. C. So, I thought I would wheel down toward the newsagents this time.

...Where, of course, I can't go in for a snack or anything. 🙃 ♿

I suppose I could hang around outside, like a teenager trying to find somebody willing to buy them alcohol for an extra $5. But, nah.

(I was aware that it wasn't accessible when I left, and wasn't wanting anything but to get out and away from the stir craziness. That double step-up gave my knees a time on bad days already. Still annoying every time, though!)

[clatterbane]

Tonight's delight, "Mr. C seems happily enough occupied and well enough lubricated with Pub From Home Night (in Swedish!) that I didn't even want to interrupt the party" edition! 😊

The microwave steam bags of vegetables really are not the cheapest option, but convenience and spoon saving have been needing to win out lately. I quickly ended up glad that I did grab these when we went to the store yesterday. Besides trying to keep a couple of frozen dinners in reserve.

(I ended up dumping the veggies into a bowl, to add some butter and seasoning. But, that still saves wrangling a big bag of frozen stuff and then a microwave-hot bowl, which is handy for me right now.)

[clatterbane]

More awesome food photography, this time with the plate sat in my lap and at least one bite out of it. 😅

But, the best (late) breakfast I have managed to make for myself in a while. It's not just a cheese toastie with Edam, it also has a quick microwave one-egg omelet on it! Plus the half a slice of lightly toasted under the broiler bread with some Brussels pâté, because we had it in the fridge and it's some yummy energy-dense, protein-rich variety.

(The half a slice of bread is a carb compromise, besides just getting too full these days off two full slices of bread plus much else on them.)

Also on the side, not shown: a cup of tomato juice.

Still getting the hang of trying to do things in the unadapted kitchen as a new wheelchair user, not helped by useful things still kinda being in chaos in there after the blitz cleaning service was through. (Same elsewhere in the house, tbh, and Mr. C has obviously had some trouble even figuring out where items belong. 😑)

Anyway, for supper we have mostly been relying on delivery and ready meals so far. He's tired enough after a full work-from-home day, among other considerations. Also, most days I have been ending up completely overloaded/worn out by afternoon, between unexpected phone calls to my half-deaf ass and sometimes people from the district nurse office/podiatry/etc. showing up unscheduled. Too autistic for that shit, as well.

Two calls already today, before noon. 😬 At least I think I made out everything important that they were trying to get across. (Unlike yesterday, with one appointment that I triple checked the date/time/location--but am still not sure what specialty it's with or what it's about! Other than "probably not gastroenterology, since someone else called Monday with the appointment hopefully for that stent procedure")

I'm also staying physically tired and sore, especially toward evenings/nights, from all the unaccustomed upper body exercise. Even without going out of the house other than that once to the store, because inappropriate door ramp and rain. 🙄

Just trying to wheel around awkwardly inside the house and get some basic stuff accomplished around here has been doing a number on my muscles. That should hopefully also improve before long, as I build up more strength and stamina. And I need to remember to do more stretching!

Anyway, I've been doing basically OK for breakfast and lunch, between handy easily prepared stuff like this breakfast and leftovers. (With some help the first couple of days, but less/none required since then.) And here's hoping that the supper prospects will get more varied/cheaper, as some of the other factors stop complicating matters so much!

I really want to be able to cook more of what I want, especially with multiple dietary requirements thrown in. And figure out how to do more things in the kitchen (plus, you know, in general!) in ways that actually work under the current circumstances!

In some ways, I've actually been under more stress--and more exhausted--since I got home. But, all or most of that should let up before long, with any luck. And the freedom/company are more than worth it!

[clatterbane]

The first time someone has climbed up in my lap in the wheelchair so far--because he was hoping I had some of the late lunch leftover murgi masala left. 😸

Oh yes, a bonus shot of the throw pillow cover that made me buy that particular set 😊

[clatterbane]

Things are very strange for Mirrors.

After a little while to get used to the idea, he was willing to get petted some. But, he is still not at all sure about the wheeled contrivance I keep sitting--and moving around! 😿--on.

He seems to be feeling more confident up on surfaces. And I got to pet him after turning on the sink for him to drink. Then he jumped over to a favorite counter spot and let me love on him some more.

Things are still very unsettled, though, and he keeps yelling and dashing around.

Feist, OTOH, seemed OK with me talking to her, and she was talking back at me. But, she wasn't at all sure she even wanted to come in out of the drizzle that started up with me and my chair anywhere near the door.

But, Scary Wheelchair or no? At least they are both aware now that I aten't dead yet, and home again. And hopefully they will get used to the idea of my new wheels.

[clatterbane]

From this afternoon. When my "brief jaunt" of course turned into a trip to the lobby atrium, because that's just how I roll. In this case, rather literally. 😅

I definitely had a brain lapse with the payment thing, also well before today. Frustrating, but hopefully I can get my card wallet soon!

Might be paying for the exertion tomorrow, after wheeling myself down there and back. That's a longer trip than I had done before on my own, and without many rest breaks on the way. But, it was more than worth it, even if I had no luck on the coffee front!

[clatterbane]

In terms of the amount of annoying help I have actually needed for a while now, I was more than a little shocked at something one nurse said the other day. (The same one who commented and sounded concerned about my unintentional weight loss before, actually.)

Anyway, apparently in all the time she has been working on this vascular surgery and orthopedics ward, which sees a lot of amputees? I am the first person she has seen who will transfer between the wheelchair, bed, and commode totally on my own. (And any other surfaces, if I had occasion to do so right now!)

I mean, from what I have seen, I am much younger and in better general health than the vast majority of other patients on the vascular surgery side of things. There are a lot of much older people, frequently also dealing with heart conditions and the like.

(And no wonder the doctors/surgeons have kept talking about my relative youth as a major point in my favor, with both surgical recovery and being a good prosthesis candidate...)

I have also already been stuck here for longer than anyone wants, with more time to adjust and get better at doing things as independently as possible. Which feels even more important than usual to me, since hospital life let's you have so little autonomy and control over your own life otherwise. 😑

(Though, from what I have seen? It's also not unusual for people to get held up in the hospital for quite a bit while they're waiting for accessibility/care issues to get worked out at home. Going by multiple of my first batch of roommates here. Who were also all elderly.)

But yeah, no wonder other staff have kept expressing surprise--and sometimes concern!--at what I have learned to do on my own by now. Including transferring between surfaces without help or supervision. Also, (at least semi-safely) picking up things that my clumsy ass has dropped/knocked around, going to the sink and washing my hands by myself (?), you name it.

Really wouldn't have thought I would be that unusual with it, though.

[clatterbane]

Small makeshift side bag, with a waist pack rigged up to an armrest! And the armrest cushion straps helping hold it more securely in place.

I had originally planned on just wearing the waist bag in front of me, but figured it would be more comfortable if I could put it readily accessible on the chair instead. So, now it's doubling as a side/pannier bag.

Hopefully the bag won't slip so those zipper pulls start scrubbing the wheels. Worst case, I could move it to the other side where they would be facing away from the wheel. But, that's a less convenient location for several reasons.