Today marks an anniversary for me with this illness. A decade ago to the day, my first symptoms emerged, although they were relatively mild at the time. This is my journey…
I have spent the last ten years of my life living with Myalgic Encephalomyelitis.
Prior to my illness, I would run around the suburbs of Adelaide. My rangy shadow at my feet, wind smacking my face, endorphins pumping through my body and the insatiable appetite for more. I would breathe in and everything would make sense. Running was put simply my raison d’être.
At the cruel age of 17, I began developing physical symptoms that gradually restricted me. My days of unbridled living and having free range roaming Adelaide were no more. I began studying astrophysics at university however my muddled brain started to become as nebulous as the stars I was studying. I switched courses to focus on the less intense universe of philosophy. After six months I became a university dropout.
Specialised testing ascertained that the blood wasn’t flowing freely around my brain and my immune system was impaired. I was thus diagnosed with Myalgic Encephalomyelitis (ME.) This name was all too familiar to me. I was the sixth person on my maternal side to be given a similar diagnosis. I had a list of symptoms that couldn’t be contained to an A4 page and this tally has only extended to the present.
To list my symptoms is monotonous. I consider them all to be various manifestations of one of pain’s faces. Like Plato’s Cave, pain cannot be described to someone void of it- one must suffer to understand this abstract word. My most curious symptom to those unfamiliar with this disease is ‘post-exertional malaise’ which restricts my walking ability to fifty metres and talking ability to short spurts. Like a video game character that is only given a certain amount of power before keeling over- I must ration my experiences.
Any tale of struggle wouldn’t be apt without a dose of wisdom imparted. From patience, to increased empathy, a decade of reflection was going to turn me into more of a philosopher than any university course would.
I started an online blog detailing my travails with ME. I discuss treatments that I’ve attempted, research that has emerged and my own personal journey. This is a branch into the outside world that lets me associate with similarly afflicted patients. In a self-referring twist, my ME only allows me to write occasional blog entries about my health. The very nature of this illness dictates that I read the latest medical studies to try and find a solution to my complex disease. ME is heterogeneous and ranges in seriousness. I have been served an overflowing plateful of severe.
Despite my disability, I am seldom bored and often recall Jean-Paul Sartre’s quote “If you are lonely when you’re alone, you are in bad company.” I am in constant pain but despite this, I am joyous. My upbeat attitude living with a chronic illness is partly due to the hedonic adaptation of having become accustomed to suffering. I survive in some way due to living at home with a supportive family, having a dedicated doctor and living drenched in positivity.
Each day as the sun sinks, I hear the same echoes of runner’s footsteps outside my home. I look up to only catch a shadow- soon that will be my shadow again.