Humans of ME/CFS

The signs were there long ago. In my last year at university, I developed a stubborn bouts of tonsillitis. Later that year, I got a fever, was sick for 10 days, and lost a lot of weight. A doctor said, “It’s like the flu, but it’s not the flu.” I recovered, moved interstate, and started a career.

A few years later, an adverse pharmaceutical drug reaction landed me in the hospital and left me with severe gut problems. A doctor prescribed more medications. I reacted to them, too. I worked full-time, but 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 saw an integrative medicine doctor, who focused on healing my gut and rebuilding my immune system. Gradually, I got better. I moved to a bigger town and hoped to build a better life.

Through most of my 30s, I remained pretty healthy; able to work long and demanding hours. I also began yoga – a godsend for my mind and body. Despite this, the spinal problems that I’d had since my youth began screaming ever-louder. In my late 30s, my back collapsed; leaving me in agonizing pain and, eventually, unable to sit down. Another doctor … more medication … another adverse reaction.

A year later, I was diagnosed with an auto-immune disease. About 10 days into treatment for the disease, BAM! I felt freezing cold. I couldn’t stand for more than 30 minutes 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 weird, labored way; it was as if I was scaling a mountain. My sleep was screwed up. Even when I could sleep, it never gave me energy. Hello, ME/CFS.
More than five years later, after two major ‘crashes’ (setbacks) that have made me more ill than ever, I’ve managed to maintain a skerrick (semblance) of a career, working at home. This brings in a small income and keeps a toehold in the ‘real world.’ But, there’s a paradox. The more I do, the worse I get. It’s the opposite of how we’re taught to believe the human body ‘should’ work – but it’s the cold, hard truth of ME/CFS.

The social isolation is the worst. I have a strong personality, which often fools people into thinking I’m not as ill as I am. In reality, my brain’s circuitry is ‘broken.’ This affects every system in my body, 24/7, in ways you could never imagine. I can no longer be the one who tries to keep in touch; who reaches out and says, “Let’s catch up.” If you want to see me, you’ll most likely have to visit me, or meet me halfway.

Am I enough for you, just as I am? Or do you only value friends based on the things they can do with you? I hope your answer will surprise me.