Bec Smethurst's legs shake so hard that she can no longer get out of bed without help, and her health is getting worse.
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The 28-year-old Bendigo woman is trying to raise funds so she can lie down on something that does not give her pressure sores.
"I need help to be able to fund a king-single bed that's adjustable, and a king-single 'active Aspire Air Eight' mattress," she said.
She has set up a GoFundMe page and is looking for help to raise $9316 for the set.
The bed and mattress would help her get through to the moment she can finally see a Melbourne neurologist and, hopefully, get a diagnosis for what is happening to her.
"That can be a nine to 12 month wait," she said.
In the meantime, Ms Smethurst fears her pressure sores could get worse.
"Pressure sores actually have stages. Right now my sores are at stage one but they can progress to stage four," she said.
"Being bedridden and not being able to get out puts you at so much risk."
Strange spasms started in Bec's feet
Ms Smethurst lives with a pre-existing disability and her health has taken a number of hits inthe past 12 months.
Surgeons removed her bowel after it stopped working and then, in July, Ms Smethurst started getting a strange spasm in her feet.
By September Ms Smethurst's leg tremours were so bad she could not walk. She also got an infection and was admitted to Bendigo Hospital for 12 weeks.
She can no longer eat solid foods and is waiting for a consultation with the neurologist before surgeons can address other health issues.
The sudden onset of the tremours have disrupted Ms Smethurst's life in profound ways.
She chose her current rental before she realised her condition would make the bathroom and steep driveway difficult to navigate.
Frustration mounts with NDIS
Ms Smethurst is trying to get more help through the National Disability Insurance Scheme but says it has been a year-and-a-half since her funding had been properly reviewed.
It has left her dealing with an "inhumane" situation were she cannot get the funding she needs.
"I have support workers who have to get me out of bed but I only have enough funding for six hours a day," she said.
"That's the only time I can be out of bed and in a manual wheelchair. Once they leave I am put back to bed. There's no way for me to get to the bathroom."
A spokesperson for the National Disability Insurance Agency, which runs the disability scheme, said someone would make contact with Ms Smethurst's support network to make progress on on her latest funding request.
"The National Disability Insurance Agency's ... priority is ensuring every participant, like Bec, has access to the disability-related supports they require," they said.
The agency revealed in March that it was working through a larger than average number of requests for changes from people using the scheme since late 2023.
"This has caused some delays as we carefully review and action all participant requests," the agency said at the time.
To donate to the bed fundraiser, click on Ms Smethurst's GoFundMe page.
Tom O'Callaghan
I grew up in Bendigo and I want to tell your stories.
I grew up in Bendigo and I want to tell your stories.
