IT started off as a niggle in her hand.
A few weeks later Orange woman Barb Hepworth got a diagnosis that shattered her life and shocked doctors.
She was diagnosed with a rare and chronic auto-immune disease called antisynthetase syndrome.
It is incurable. Only six people in Australia have the disease and 70 per cent of those diagnosed die within the first five years.
“I am hoping I am in the other 30 per cent,” Mrs Hepworth said.
Mrs Hepworth is lucky she went to the doctor as soon as she noticed the hand pain.
She thought she had repetitive strain injury and needed a new mouse for work.
“If I hadn’t gone to the doctor when I did they would be planning my funeral,” Mrs Hepworth said.
She was in Orange hospital for five days in June before being transferred to Nepean Hospital for nine days because Orange did not have a lung specialist.
Mrs Hepworth has 30 per cent of her lung capacity and must be on oxygen full-time, however the batteries for her machine only last from two to three hours.
She needs an extra set of batteries so she can leave the house for longer periods of time without having to plug the machine into a power point.
Mrs Hepworth has a message for people wasting their lives sitting on the couch or holding grudges against former friends and relatives.
“This has made me realise that there is so many things out there that can happen to you,” she said.
“You never know what is around the corner so take advantage of the time you have.”
She and her husband Ken worked hard their whole lives and did not spend a lot of time on leisure, she said.
She always believed once her son and daughter grew up she would spend more time relaxing.
Mrs Hepworth turned 47 just after her diagnosis.
She can not give her 11-month-old grandson kisses or cuddles anymore because a simple infection could kill her.
“My husband and family have just been wonderful, Ken was at the hospital with me 12 hours a day,” she said.
Doctors told Mrs Hepworth she would never work again, but the TAFE employee said she hoped to prove them wrong.