u/Spiritual_Garbage_25

hi all, i was diagnosed with heds two years ago when i was 17 and since then it’s felt almost impossible to get anywhere in the medical system

specifically soon after i was diagnosed i developed some new symptoms that really affect my day to day life (ive always had chronic migraines but these have gotten more frequent, i suddenly developed vertigo and double vision, i have intermittent numbness in my legs and hands and became very unbalanced and uncoordinated.) not all of these symptoms came about after my diagnosis, but they definitely all got worse and i didn’t really bring them up in appointments until recently

specifically i mentioned these symptoms to a neurologist i was seeing at the time and he just told me it was “part of my constellation of eds symptoms.” i totally get eds is multi systemic but none of these things are “typical” heds symptoms and considering how much they affect my day to day life it kind of feels like i’m being shirked off

like am i crazy? sometimes i feel like i’m reaching for something to complain about but it’s super frustrating to be dealing with this every day and not knowing why. no investigation as to why i keep falling over or dropping things, i’m just expected to get on with it

does anyone else have this problem? i’m grateful i have one part of my health mystery solved with my heds diagnosis but i almost wish i didn’t have it as it feels like it’s preventing me from getting any more help

didnt mean for this to turn into a rant, i think you can tell i’m a bit sick of it 😅

Hi all, I got my new chair yesterday (quickie argon 2!!) and it's been amazing so far. I was also fortunate enough to get a smart drive which has been a bit challenging to get used to but I live in a very hilly area so it's super useful. My chair also came with two anti tippers, which I absolutely despise. My previous chair (quickie QS5X) never had anti tippers and I've never felt like I needed them. I've fallen over backwards a couple of times but never so badly/enough I've wanted to get anti tippers. I'm pretty competent at wheelies and am confident going up and down curbs and when I took my chair out yesterday it felt like my anti tippers were constantly scraping up and down curbs and hitting the pavement (even though they were as high as they can go), while my smart drive handled it fine. It was stressed to me by the place I got my chair from that I absolutely needed to use the anti tippers with my smart drive but I'm really not a fan of them. Is it really necessary to keep the anti tippers on? Obviously I don't want to break my smart drive in the event that I tip backwards but I feel confident enough that I'm probably not going to

Hi, I finally got evaluated for my new chair (argon 2) !! Super exciting as I’m hoping this one will correct a few issues I had with my old chair. My old chair was matte black which I was a big fan of and I’m still considering for my new chair. However I was thinking silver for my new one, just as a bit of a change. Does anyone know where I can find pictures of quickie’s new silver/grey colours on actual frames? I’ve seen swatches but they don’t always reflect how they’d look on the actual chair. I like the look of silver ore and metallic shadow in particular but my first hospital chair was silver so I don’t want it to look really medical 😭