I’m one of thousands of Australians with chronic fatigue syndrome but I’m lucky: I’ve become a human experiment

Home Australia News I’m one of thousands of Australians with chronic fatigue syndrome but I’m lucky: I’ve become a human experiment
I’m one of thousands of Australians with chronic fatigue syndrome but I’m lucky: I’ve become a human experiment

What risks would you take if you were only able to function for one, maybe two hours a day? The rest of the day, you must lie down with an eye mask on while listening to something quiet. You can’t work, exercise or drive. You can’t leave the house for more than an hour or two once a week. 

Would you risk an increased chance of skin cancer? Or possible vision damage and blindness? 

I would. I am. 

Many years ago, I woke up one morning unable to move my body from my bed. It felt like a tonne of wet cement had been poured on top of me and I couldn’t shift it. I struggled to answer questions, read, remember things and connect ideas. Getting myself up or out of the house to work became an extreme sport. 

A woman in a blue shirt and jeans poses for a photo with her dog
Some of the medications I’ve experimented with have provided life-changing gains.(Supplied: Alice Rumble)

After eight years visiting doctor after doctor, I was diagnosed with a disease known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME). 

ME has no treatment or cure. Millions of people are joining this cohort via long COVID, which shares striking similarities with ME. Both patients and doctors are in a murky world of unknowns.

But I am one of the lucky ones: I’ve become a human experiment. 

If there’s a chance a treatment could increase my capacity so I can work, or drive, or socialise independently again, I will try it. When you’re trapped with a debilitating illness, any different feeling can be a welcome relief. 

What does life as a ‘lab rat’ look like?

I experiment with different medications under the guidance of trusted medical professionals. As I see it, medication is technology. Why wouldn’t I use technology to try and improve my quality of life? That’s not to say it’s a simple — or easy — process.

For years, I was shunted between different doctors for extensive, expensive tests. They couldn’t find anything that medicine had a treatment for. I tried lifestyle changes and alternative therapies to no avail. Finally, I decided it was time to experiment. 

Posted , updated 

Leave a Reply

Your email address will not be published.