• Strongheadedsoftie - My Story

    Chronic Fatigue Syndrome.

    A 3 word phrase.

    Simplistic, but beholds much depth that is beyond imagination.

    At the age of 13, I was diagnosed with CFS after battling an immunological attack on the brain by a Mycoplasma infection. I had developed Chorea, a wild, swinging and seemingly deranged movement disorder, in which my limbs flew and danced in all directions and in which, I digressed to a kid of age 2 - someone that needed to be fed, bathed and constantly looked after. The acute phase lasted for 8 months, after which I was left with tics and tremors - a haunting memoir of the past. Not only that, but six months into my recovery from that, I began feeling tired, as though in a stupor. On top of that, I was in severe muscular and nervous pain that constantly disturbed my sleep. Poor concentration saw me, an A* student drop to a F grade. Upsetting as it was, I refused to bow down, for I had the entire world ahead of me.

    Within a year, around my 13th birthday, I was diagnosed with CFS, whose details, almost all of us know as sufferers. Nothing ever provided relief. Before this episode in my life, I was an active student - a dancer, a swimmer, a badminton player, a national choir singer, an artist, a student leader and a top student. I was an active person who socialized and headed many student lead initiatives. With CFS and my neuro-immunological problems, my world came crashing down. My muscles degenerated and I couldn't walk even a short round around my home. I couldn't do any of my highly active hobbies and had to resort to being a couch sportswoman. Everyone around me was shocked - no one could comprehend CFS. They directed their shock towards me, in the form of anger, frustration and apathy. Days would go on forever, with having to understand why CFS symptoms kept on changing and adding on, on one hand and metabolizing and rationalizing my feelings towards the constant stream of criticisms coming my way. Medical reports came back nearly spotless, with only PET scans showing hypometabolic changes in the brain. No one could comprehend what this thing called 'CFS' was.

    It was then, I resolved, that I would fight for myself and the rights of my fellow CFS sufferers. I had lost some close friends through this time and had become the subject of countless attacks of criticisms. My siblings, being young and naive, would ask my parents and me, 'Why is she so lazy? None of my friends have such sisters.' I was heartbroken, but I thought to myself, I'm trying my best and I'll keep doing so and hoped that being positive would mean something might just happen. I guess it was my resilience that brought me through this phase, as we struggled to find out what CFS was.

    Since then, I've tried and gone along with treatments and therapies I'm not comfortable with. Ingesting 20 pills of vitamins a day, drinking herbal concoctions, eating bitter fruits are all part of my day. I've even been forced through physiotherapy that worsened my state but I did it all to bring a smile to someone's face. I'm still searching for a treatment that will work whilst trying to get relief for my neurological problems that continue to worsen.

    At 16, I sometimes feel I've fought harder than many of my friends and I sometimes feel I have insight into the world and how humans work. I've realized that problems are a constant part of my life for the moment and I've got to keep fighting, fighting hard - for I have an ambition so dear to my heart and now sealed to my living being - I am going to become a doctor, fight for the rights of CFS, understand it's pathophysiology and hopefully, be able to help people with CFS. Although CFS has taken many of my aspirations away from me, I continue dreaming, for one day, I'll be up there with not the least regret.

    Remember friends, for a CFS sufferer, though our previous abilities have been cruelly snatched away from us, we should never stop dreaming - for once we dream, nightmares can be conquered and sweetness will prevail.

    Best regards,