Ivy needs a wheelchair :(

Hi! I'm Ivy, a 35yr old trans girl living in Melbourne, Australia. Please read my story.

 

I have a long and complex medical history, but long story short I need a wheelchair to get some independence back. I am autistic, ADHD, plural and also have been diagnosed with fibromyalgia and long covid (even though I can't work out when I got sick because I was apparently asymptomatic).

 

I identify as intersex (chromosome testing came back normal, but my gender GP and endocronoligst both agree I am, just that there isn't a test for me yet...same as Ehlers-Danlos Syndrome - I have a premliminary diagnosis but getting a formal one is near impossible.

 

I have a great physio who I am seeing for hands on relief and body movement, and also a really good gender GP for hormone stuff. I also have NDIS funded support workers, however the NDIS cut my funding in my last plan by 1/3, even though I proved I needed additional supports - don't get me started on the NDIS, beyond saying that an application for a wheelchair will take over a year to maybe approve.

 

I'm in pretty constant pain across my whole body, particularly my legs, and my feet which are tingly and tender (apparently an EDS symptom). I have weak muscle tone, difficulty with proprioception, balance and diziness. I am passing out and my legs giving way just at home, let alone outside. Any activities outside even with my manual wheelchair take days to recover from, and ugh :( There's a lot more medical things I'm happy to discuss in private, but this is already a LOT for public to know.

 

The power wheelchair most suitable for me (I've been assessed by the ILC and trialled multiple different chairs) is AU$5,995, plus $700 for a cushion which is A LOT. Here's a link to the chair, which I have tried (thats me in the chair in the cover photo) alongside an ILS Occupational Therapist and my own OT to confirm suitability: The Chair

 

However, it would enable me to leave my apartment independently whenever I need, and not rely on support workers to get around or deliveries of essential items. It will also help me to socialise more, something which is really important as I live alone and don't have any contact with family. It would also relieve pain and stress, and hopefully let me resume working, something I havent been able to do in a year - I rely on the Disability Support Pension.

I have GP, OT and physio letters to support the need for a power chair. But I might not have enough diagnosis boxes ticked for the NDIS to fund one in a year - especially when some of my diagnoses are impossible to get at the moment.

$6,900 will pay for the chair. I feel bad writing this out as I know so many people are struggling at the moment, but I don't know what else to do.

 

Theres always the question on what happens to any excess donations...

 

 

 

 

 

As I said, I know this is a hard time for so many people - my friends would say I donate what I can where I can to people in need, and I never like asking for help myself. If you've read all this and able to donate, I love you and send all my thanks. If you can't donate, I also love you <3

 

Much love and gratitude,

 

Ivy