Paula Rogers isn't so much living, as existing.
But now, the Rotorua multiple sclerosis sufferer has a glimmer of hope that life will get better after an announcement Pharmac will, as of last Friday, fund two new revolutionary drugs.
While there are no guarantees that Ms Rogers will be accepted for the drugs, or that they will work for her, the news was a welcome birthday present for the 47-year-old mum of two.
Natalizumab (trading as Tysabri) and fingolimod (Gilenya) will immediately help hundreds of MS patients diagnosed with relapsing remitting forms of the debilitating and incurable condition.
It's been 14 years since Ms Rogers was diagnosed with the condition and in the past few years worsening symptoms have taken away her ability to work.
That adds another layer of frustration to the feeling of being robbed of the best years of her life, because of the symptoms. Since having to quit work, she's also had to worry about finances and the lack of social interaction.
Her worst symptom is fatigue. During bad relapses she is unable to get out of bed other than taking her teenage daughters to school. She then sleeps all day before picking them up, and then returning to bed to sleep all night.
"Everything is just a ridiculous struggle. The stress on my kids is insane. The stress on my parents, who are in their 70s. They will help me out and I'm really lucky but it's not fair on them."
Ms Rogers said part of the "sheer frustration" of the illness was knowing there were drugs out there which had helped patients, but not having them funded in New Zealand.
"If I do now get the chance of one of the drugs it could change my life ... my children's lives and my parent's lives."
Ms Rogers hopes to see her neurologist within the next three months to find out if she is eligible for one of the drugs.