Stand with Me
Rising Cairn by Celeste Roberge
The stage was set, years ago. When I was 25, an adverse pharmaceutical drug reaction landed me in hospital; leaving me with severe gut problems that went on for months. A doctor prescribed another medication. I reacted to it too.
I held down full-time work, but I had a lot of sick days. I spent entire weekend afternoons on my bed; unable to move. I was beyond exhausted, and I was only 26.
I found a doctor who focused on healing my gut and rebuilding my immune system. Gradually, I became much better. I moved to another city and hoped to build a better life.
Through most of my 30s I remained pretty healthy; able to work the long hours the business world demanded. I also began yoga – a godsend for my body and mind. Despite this, spinal problems that I’d had since youth began screaming ever-louder for attention.
Sometimes, the loudest things are the hardest to hear. In my late 30s, my back collapsed; leaving me in agonising pain and, eventually, unable to sit for any length of time without severe repercussions.
Another doctor, more medication, another adverse reaction – and another hospital procedure, which led to a diagnosis of auto-immune disease.
About 10 days after the procedure, BAM! I was freezing cold. I couldn’t stand for more than half an hour without my legs turning to jelly. I couldn’t walk to the end of my street without running out of energy in my legs and breathing in a strange, laboured way, as if I was scaling a mountain. My sleep was screwed up – and even when I could sleep, it never gave me energy.
Hello, ME/CFS.
More than 10 years later, after several more immune system assaults that have made me more ill than ever, the career I had is all-but-gone. I’ve lost friendships, missed important family events, and am missing the chance to see my niece and nephew grow up.
I'm the same person I was before. I have a strong personality, which often fools people into thinking I’m not as ill as I really am. Yet the reality – borne out by research – is that my body can’t make energy on demand. The more I try to do, the worse I get. It’s the opposite of the way a healthy human body works – but it’s the cold, hard truth of ME/CFS.
ME/CFS affects every system in the body, and every aspect of life - 24/7, in ways healthy people struggle to comprehend. Up to 250,000 Australians have this disease. It’s not a rare condition. Despite this, doctors receive virtually no education about it. They often rely on outdated and discredited information, so their advice to patients is generally very poor.
The ME/CFS field has some great researchers, but they struggle for funding. It may be years before there are diagnostic tests, and decades until we have effective treatments. Will you stand with us while we struggle, and hope, and wait?
Support Australians with ME/CFS by donating to ME/CFS research.