Linda Blatt says she’s had two lives.
Then there’s life now.
On a good day, the 34-year-old might be able to walk the short distance to the park down the road from her Melbourne home and just sit and enjoy the scenery without “excruciating head pain” and glasses because she can bear to see the light. It’s a great day if she’s able to walk back without feeling like she’s going to collapse with exhaustion.
A bad day is one like the day before I speak to her. She had excruciating "10/10" head pain, couldn't get out of bed, and had to remain in a dark room.
"I feel utterly shattered, it feels like someone has run over me with me a truck, you feel like every part of your body feels weak and shattered. Sitting upright is exhausting, I feel like I'm going to throw up and I just try to survive another day," she tells me.
"It's retraumatising every time I have a really bad day like that because it takes me back to last year where for six months I was in a dark room 24/7 with a 10/10 head pain. The only time I left was if I was in emergency or having treatments.
"Every day I have a day of that level brings back the fear and memories of that time. It was my darkest, darkest point."
Her partner John is more than understanding - he's also a Lyme disease sufferer and has suffered with the condition for eight years. The difference? In the UK where he is from, Lyme disease is at least recognised as a health condition.
In Australia, it is not.
As a result, John recently launched a GoFundMe page to help 'save' Linda by raising the $40,000 needed to for her to continue a current herbal treatment from the US which is the "only reason she can get out of bed some days".
She must take the herbs for the next one to two years but only has money left for two more months before she goes through the remainder of her family's life savings.
The family have already spent $500,000 on travel and treatments for Linda as well as $21,840 from a previous donation drive. Unable to leave her bed most days, Linda is also unable to work. Despite a recent Senate enquiry which she contributed to, Lyme disease is still not recognised meaning nothing is covered by Medicare.
What is Lyme disease?
According to the NSW Health department, Lyme disease is a tick-borne infection caused by bacteria in the Borrelia burgdorferi sensu lato group. It's transmitted by a bite from an infected tick, commonly found in Asia, Europe and North America.
"Related ticks occur in Australia but these have not been shown to be infected with Lyme disease Borrelia bacteria," their website reads.
Linda was at a spiritual retreat in California in 2013 when she was bitten. When she returned home to Australia, she noticed a rash on her arm.
After months of increasingly debilitating flu-like symptoms and countless visits to doctors and specialists, the idea that it could be Lyme disease was eventually suggested by an integrative GP.
The symptoms she's experienced over the last few years include severe body wide muscle pain, severe brain and spine swelling, unbearable migraines, neurological disorders, extreme chronic fatigue, breathing difficulties, nerve pain, hair loss, skin disorders, night sweats, insomnia and chills.
The last year and a half has also seen Linda develop other major additional complications, including Postural Orthostatic Tachycardia Syndrome (which affects her BP heart rate, urinary function and temperature regulation).
She also experiences constant and extreme chronic daily head pain which means the book lover is often no longer able to read or watch television.
Time is everything
The delay in diagnosis, due to the lack of education and acknowledgement of the disease in Australia, has arguably contributed to the severity of Linda's current condition.
"If you catch it within a month and take a month of antibiotics, you're usually cured. I missed that window for multiple reasons," she says.
"I wasn't educated by my country about Lyme. It just went on and on...I saw 10 specialists for every different symptom and no-one knew what was going on.
"I know that had it been recognised here and had I got diagnosed earlier and treated properly here, I wouldn't still be sick now, most probably. That's devastating to know that."
A Senate inquiry last year received more than 1200 submissions from Australian sufferers. It concluded that urgent funding for research into tick-borne disease and awareness of how to prevent it was needed, but Linda says there is yet to be any action.
"It's disappointing. People got excited and thought something would happen. It's too late for me, I'm on this path of trying to self-heal alternatively now because I've exhausted so many options. I've got a lot of damage in my body, extra conditions, which is really sad," she says.
"It's for future people, I want this to change, you want to know your suffering hasn't been in vain.
"The ridiculous thing is that Australians, like myself, travel. Even if you're going to say it doesn't exist here and it couldn't have gotten here, you should be knowing how to treat the millions of Australians who travel every year. That's the bit that boils my blood the most," she says.
She's tried everything
Linda has undergone various gruelling procedures and alternative medical therapies overseas in Germany, the USA and Cyprus in a bid to rid herself of Lyme disease.
These include whole body hyperthermia, cryotherapy, apheresis (a blood filtration procedure), IV ozone therapy, neural therapy injections, oral and IV antibiotics, bee venom therapy (which involves being stung with live bees three times a week) as well as a variety of mainstream medications.
"My whole life has been focused on my health for four years now. As well as overseas treatment, I've seen almost every doctor who knows about Lyme in Australia. I was briefly in remission for five months, went to Germany about three years ago and I had this miraculous recovery... I tried to go back to placement, I was relapsing but I pushed to go to back and I fully relapsed. That was devastating," she says.
"I thought I was getting my life back on track, I went from being completely bed bound and couldn't remember people's names and words, I went from that to 80 per cent almost overnight over two weeks of treatment and they said I was cured.
"Unfortunately five months later I relapsed."
Four years on
While progress is a lot slower, Linda really believes her current medication, a mix of 32 different herbs, is her best chance.
"If you saw me at the end of last year when I was at my worst, I was in the dark, begging my mum to take me to Switzerland to die because I couldn't endure another minute of it then you'd understand that I finally have a chance, a chance of getting my life back and being well again and fulfilling dreams I had and have made," she says.
"To have finally found something that is helping me, very slowly but surely, is a miracle. It's a miracle and it's giving me that little bit of hope I need to go on. It's very up and down still but I'm able to now be out of a dark room a lot of the time.
"Unfortunately they're extremely expensive. I'm terrified on the other hand of stopping them earlier, I've still got to take them for one to two years because I could lose all the progress I've made over the last six months."
Both Linda and John, like many Lyme disease sufferers, say doctors haven't taken them seriously. This includes Linda's own father.
"My dad's a GP and he doesn't believe in herbs or anything like that, I've only just convinced him I've got Lyme [disease]," he says.
"My experience with abusive and demeaning doctors is what most Lyme patients in the UK now expect. Doctors believe we are simply hypochondriacs with nothing wrong despite some patients having seizures," adds John.
"Most Lyme patients who are chronically ill in the UK feel doctors have been degrading, dismissive and often extremely rude. Patients are left to fund their own treatments or die basically."
Infectious disease specialist Professor Miles Beaman, at the University of Western Australia, says Lyme disease should not be diagnosed in Australia without supporting evidence. He also questions the regulation of diagnoses and treatment obtained overseas.
"There’s no doubt that there’s a group of people that have troublesome symptoms, and that doesn’t mean they don’t have a real problem. But I think it’s not doing patients a service, giving them a false diagnosis [of Lyme]," he said, reported The Saturday Paper in a 2015 article.
The silver lining
The one silver lining of the pair's experience of Lyme disease is that it brought them together.
"We met on an internet forum discussing whole body hyperthermia for Lyme. We chatted a lot online and on Skype for nearly a year and then met in America at a Lyme clinic there," says John.
"We only met twice, but for months each time, before I moved to Australia [three weeks ago]. We spoke a lot online at first then met at a specialist Lyme clinic in America. After that Linda came back to the UK for three months and stayed with me. Then the following time we met again for another treatment in Europe."
Linda says going through her dark period while doing long distance was hard.
"I didn't have the luxury of my partner here to give me a hug or kiss or distract me. He was always there for me on the end of the phone, on Facebook chat and Skype. He's amazing and he did the best he could, and he constantly said 'I wish I was there to hold you because there are no words for what you're going through and you need a hug'," she says.
"[Now he's here, affection] doesn't cure you but sometimes that's what you really need emotionally.
"Although his pain isn't as bad as mine, he understands the picture and complexities of the disease, how debilitating it is, having to put your whole life on hold. To have somebody that understands so much is so validating and comforting."
Naturally, having a relationship where both parties are seriously ill is not easy.
"All the normal things you take for granted in a relationship mostly can't be done. Going out for dinner, dancing or going to the beach become very rare occurrences to be savoured when they happen and more a goal for the future," says John.
"We work from where we are, I read to Linda, we watch films together, occasionally we go out if she is feeling well enough. There is lots of joy to be had in doing little things together!"
Despite it all, Linda remains strikingly optimistic. She says she's also found a new purpose - getting better so she can counsel others with chronic illnesses.
"I know it so well first hand and I know the psychology having studied it for 10 years and I know I can really help people and not just advocate from my bed... It's a big part of what keeps me going," she says.
"I want to help people navigate the disease, the impact of not being believed, the psychological and emotional trauma of being disbelieved in hospitals, by my own father, so many doctors, friends and family. It's horrible.
"I can't explain that emotional toll, apart from the pain and physical, not being able to go out, travel, dance and sing, I was very social I was really out there in the world and being a real extrovert, your life becoming four walls, it's hell.
"I remember all the amazing things I did before, feels like two separate lives, two people living two different lives. The life I had before, that person could never have imagined this life now. It's like a parallel universe."
You can donate to help Linda's fight at GoFundMe.
Listen: Being chronically sick turned Sylvia Freedman into a warrior for other women.