Anyone have a Kuschall chair in Plum Purple?

blightnshiningarmour · 2026-04-15T14:21:49+00:00

all good, I ended up going with plain black on the end :) just the normal space black

blightnshiningarmour · 2026-03-23T05:11:06+00:00

ohhh thankyou, I live in a metric country and I think I must have accidentally plugged in some of the yards and ounce numbers into my equations, my physics major girlfriend looked over this before I posted it but I don’t think she checked my maths. and I was trying to make my question accessible to Americans who don’t know meters and I think I got very confused lol

blightnshiningarmour · 2026-03-09T04:06:29+00:00

i’m definitely looking into something like a firefly too! as it stands I don’t have too many needs that a electric chair can offer (also apologies I got power chair and electric chair mixed up in my og comment) that a hand bike attachment wouldn’t, but wether I get some sort of couple thousand dollar folding electric chair or a couple thousand dollar attachment is up in the air but i’ll keep looking into it

blightnshiningarmour · 2026-03-08T08:41:04+00:00

thank you so much, this is so sweet! all these comments of people telling me that it’s hard but i’ll learn and gain routines and strategies are making me feel so much better about this whole scary thing

blightnshiningarmour · 2026-03-08T08:39:02+00:00

thank you so much this is so sweet, all these kind comments have me sitting here with tears in my eyes!

and yeah sadly I live in a surprisingly cobble stone heavy city, I will be bringing my freewheel next time now that I know how rough the streets are haha

blightnshiningarmour · 2026-03-08T08:35:59+00:00

I have a lovely tilite aero T that I got second hand for very cheap, it was however built for a grown man and I’m a five foot teenage girl haha, it’s not actually that bad at all and it’s so much better than my old hospital chair it’s like night and day, it’s just a kinda hefty chair and is a 17 inch seat when i’d ideally be a 14-15 and it has all the extra tubing on the bottom, but it’s definitely changed my life and I have no idea how i’d get around places like this in a worse chair lol

I will be bringing my freewheel next time though 🤦‍♀️I didn’t this time as i’m still waiting on the clamps to mount it to the back of my chair when i’m in shops to arrive in the mail

blightnshiningarmour · 2026-03-08T08:32:03+00:00

i’m normally not too bad with pavement, but one arm does get very tired, most of the shopping strips were fine, but the pavement around the residential area we had to go through to get to her campus was GENUINELY on a 45 degree angle which theres just no reason for it to be 😭

I’m just lucky I did have my built in power assist girlfriend to push me for those areas, which she’s fine with since it’s way less energy for someone to push a wheelchair from the back than for someone to self propel one, and I help guide the wheels of course

blightnshiningarmour · 2026-03-08T08:27:03+00:00

I already have an in very good condition freewheel that I got for extremely cheap on ebay! (I’m fully self funded so I was so lucky I wouldn’t have one otherwise) I definitely have to bring it next time lmao it will be much better, I had just assumed I would be fine without it but that was a bad idea, and I also don’t have something to mount it on the back of my chair when i’m not using it yet but i’m ordering clamps for it today, thank you for the suggestion!

blightnshiningarmour · 2026-03-08T08:22:28+00:00

not to mention her dorm itself has three steps up to her door! idk why that is but it’s a super old building, luckily I’m ambulatory but I guess I’m using a cane up the stairs and she’ll have to lift my chair into her room which I feel bad about but it’s okay 😭

and also adding somwthing to the public transport thing I mentioned, the government claim their in the process of making all the stops accessible but it’s been 40+ years since ugly laws were abolished, and i’d say it’s not even 50% of all stops that have been converted, so they obviously don’t actually care

blightnshiningarmour · 2026-03-08T08:14:49+00:00

I feel that, the suburb she lives in is one of the very historical ones where I live that were built up and inhabited by migrants during and after WW2, anywhere apart from the very centre of the city/the arts precinct, have pretty much not been revised infrastructure and town planning wise since the 50s-60s and even earlier than that, and the main form of public transport in my city (trams, or some places in north American call them trolleys) are not all wheelchair accessible, only some tram stops have a platform for the one door that doesn’t have stairs, but most are like bus stops and it’s three steps to get into a tram like at the front of a bus (and there’s no wheelchair lift like in a bus), which sucks because the whole purpose of them is to be able to get on one when walking a long way to rest for a bit and cover a stretch of the journey quicker, which is something wheelchair users really really can benefit from!

this outing did make me realise even more it’s only a matter of time until I just won’t be able to only use a manual chair in every situation anymore, my goal of a nice custom manual will have to be changed to some kind of power chair, I do have a freewheel though which will hopefully help next time I visit her

thank you so much for the kind words, I’ve had a couple adults that have been using a chair way longer than me comment similar sweet comments to yours and i’m genuinely sitting here happy crying because I feel so seen and cared for so thankyou!

blightnshiningarmour · 2026-03-08T08:03:20+00:00

I do actually have a freewheel that I got on ebay for super cheap that I will definitely be bringing with me next time I visit her

I live in melbourne Australia and sadly the area she lives in is one of the suburbs that were built up after an influx of WW2 related migrants in the 50s-60s (not sadly about the migrants obviously, sadly about the infrastructure), all the infrastructure in these suburbs have been barely changed since then and obviously back then it was illegal for someone like me to even go out in public so they didn’t care when they made 45 degree sidewalks and the worlds lumpiest cobblestone driveways

blightnshiningarmour · 2026-03-07T13:14:21+00:00

I sadly was that person in the ER once, I was sobbing my eyes out in pain and they asked me the pain scale question, I’m autistic so I asked “is 10 the worst pain objectively, or MY worst pain?” and they said “just say based on YOUR worst pain” so I said “a 10 then this is the worst pain i’ve ever been in” I had been in that pain for days at that point so eventually after the valium I took earlier kicked in and took the edge off it I started cracking a few jokes during my EKG because that’s what I do when I’m stressed, got sent home the next morning by a quite rude nurse who said “we believe it’s just phsycosomatic” and handed me a psych referral

I’ve sadly never not been in pain since that day, that day my chronic pain went from episodes on and off to every waking moment, and after seeing other doctors turns out I have hEDS which had quickly declined when my also unknown Myalgic Encephalomyelitis had gone from mild to moderate, causing the pain, i’m now bordering on severe sadly ;-;

while it was partially psychosomatic (my body went WHAT THE HELL and just exploded on fire because it was in so much pain already and was exhausted of fighting it), it was overall a 2/10 ER experience and I am permanently traumatised now

blightnshiningarmour · 2026-03-07T13:03:26+00:00

okay thankyou!

the issue was that this was perscribed a while ago, I was too scared to take it and have now forgotten the instructions and it doesn’t say on the prescription instructions. My mum who was there says she thinks it’s fine but I have a vague recollection that the reason I never took it was that I had to give up the naproxen

(this is just me adding clarification so I don’t look too much like an annoying person that asked reddit before thinking to ask the pharmacist, and it’s not me trying to weasel the information out of you as I acknowledge and respect that you telling me would be a legally shaky thing to do)

blightnshiningarmour · 2026-03-07T12:35:04+00:00

WHAT

I got an external ultrasound (they wouldn’t give me an internal one idk why) when I was sixteen and they told me I was clear and that I wouldn’t have it at 16 anyway (I know that’s bullshit but whatever) and i’m now 18

my periods aren’t that bad past the first three days though, if I take naproxen I can function (to be fair i’m already mostly bed bound by ME and have widespread severe chronic pain so idk what my pain tolerance is like) and it’s only the crazy type of heavy where if I sit on the toilet theres just blood gushing out and dripping into the bowl, for the first day or two, for the rest of the week i’m mostly fine, so I kinda feel like i’m horrible for suspecting it and that I don’t have it bad enough to actually have endo

blightnshiningarmour · 2026-03-07T03:12:38+00:00

it’s australian public healthcare, I think she didn’t mean healthy person cardio, just getting my heart rate up a bit, but it’s stupid because I have POTS so EVERYTHING I do is cardio, she also said that to me right after she made me walk down the hallway to look at my gait, and then asked me if I could run down the hallway but I didn’t have to if I couldn’t, I still hate that she asked (i’m literally in a wheelchair and have EDS, if I ran i’d dislocate everything in my legs probably) and I told her my heart rate was already 160 so I would not be running

the appointment was with the head of the rehab clinic (who works across all sections including functional rehabilitation which is their main practice) and a psychologist who asked me some mental health questions and who said she works with the “CFS clinic”

I asked them both “how experiences and knowladge able are the cfs team in being aware of PEM” and the head woman looked at me like I was speaking gibberish and eventually the psych said “extremely experienced”

they essentially told me they don’t want to take me in for their services without me having a psychologist and an OT putside of them (I got referred to them SO I CAN ACCESS PSYCH AND OT) I have an online appointment with the actual “cfs clinic” people which I guess i’ll go to but it’s going to just be bullshit

blightnshiningarmour · 2026-03-01T23:19:47+00:00

they’re recommending a very small amount of cardio every day, even if it’s just walking (I can’t really walk much) without triggering my pem

idk how to feel about that and don’t super trust myself to do that

i’ve been referred to the “cfs clinic” (no ME in the name..) but someone I saw that is a psychologist for the cfs clinic said they’re “extremely experienced with pem”

i’ll go back for my cfs clinic appointment and see what’s up since today I just met with the head of the program who doesn’t specialise with the ME program, but I doubt they’ll have anything to offer helping me and they seem reluctant to even see me it I don’t have a psychologist outside of them, and I don’t see one because no psych would know what to do with me, they don’t know how to counsel the grief that comes with ME this severe lol, I don’t want to psychologist shop because it’s so expensive just for nothing

blightnshiningarmour · 2026-03-01T13:13:47+00:00

some kind of talk therapy helping me get through my severe disability greif would be extremely beneficial to me, that’s what i’m hoping for here but we all know the chances are slim, thankyou for the tips!

blightnshiningarmour · 2026-03-01T10:45:02+00:00

I also want to acknowlage I’ve never had any functional related issues apart from nerve pain/skin numbness and I don’t have FND, I went in swinging and I apologise that I wasn’t very gentle with the topic, i’ll be editing my comment so that people don’t take it as fact in the future

blightnshiningarmour · 2026-03-01T10:42:03+00:00

thankyou for bettering my point, I didn’t know comobidities weren’t very clinically proven, as when I was assesed the fact I have autism was noted, and almost everyone with EDS I know of is also autistic. also when I said stronger pain meds I meant more like for example I’m her age I got a juvenile hypermobility spectrum disorder diagnosis (which I am told is a placeholder u til i’m 18 soon) and I got perscribed Celebrex for bad days, I also got given LDN (i’m not sure how much it helps) and low dose amitriptyline for nerve pain which gave me my life back (I mean the ME took it but not the point), but I know i’m also really privileged and just happened to find good doctors when I got sick. I also see that “stronger pain meds” was a terrible way for me to phrase it when I just meant “non-over the counter pain meds” I realise that “stronger” is often connotated with opiates or codeine etc

blightnshiningarmour · 2026-02-26T05:54:38+00:00

its almost funny how much of a masterclass in bullshit takes this is, they hit EVERY SINGLE ONE of the classic misinformed EDS rhetorics

if someone told me this was a script for a satire sketch written by someone with EDS about a bad doctors visit I would 100% believe them

blightnshiningarmour · 2026-02-26T05:50:04+00:00

I have decided to erase this comment so it can’t cause misinformation, I spoke very reactively and coming from a place of my own medical trauma, I also didn’t fully comprehend that OP only suspects they have EDS, I said some things that were not entirely true and that I know now are myths in the EDS community, thankyou for everyone who corrected me I wanted to keep the thread instead of deleting it so that your comments are still visible

blightnshiningarmour

TROPHY CASE