Recently, a former engineering student of mine asked me ‘did you have this illness while you were teaching us?’ I replied ‘yes, it didn’t happen overnight’. I somehow managed to work and live life as normally as I could with this rarity.
When I was finishing my Masters in 2007, I met a lifelong ‘boyfriend’ of mine, as my friends like to call it. Polymyositis is a chronic condition that will never leave me. Rare diseases take an average of three to four years to be diagnosed, however in my case it took almost eight years.
I was very flexible and supple as a child. I was capable of bending my body very easily and could do highly difficult yoga poses, such as holding hands in the front and taking them over the head and to the back without breaking the hand bond.
I have loved sports since I was a child and I am passionate about dancing. One sunny afternoon in the summer holidays I was dancing in the lobby and got so carried away that I starting doing gymnastics and went into the splits. I heard a ‘crunch’ and realised my knee had come out. I felt pain like never before. My mum and dad rushed towards me after hearing my scream and dad pressed my kneecap back into place. I was able to stand and walk like nothing had happened. Friends and relatives came over in the evening to check on me and I was the one serving them tea and biscuits!
The next day, dad took me to an orthopaedic doctor who said I was fine and was just very flexible. I was told the joints in my body were very loose and my muscle tissues were exceedingly resilient which made my body highly flexible. He also told me to drink more milk and I would be fine! Now I think that instead of ignoring these symptoms, if we would have had some blood works done back then, it would have helped us in detecting this rarity more quickly than my body giving up gradually. We had no clue why it happened and what it was. Early diagnosis helps in so many ways.
Polymyositis is one of the inflammatory myopathies – a group of muscle diseases that involves inflammation of the muscles or associated tissues, such as the blood vessels that supply the muscles. A myopathy is a muscle disease and inflammation is response to cell damage. Polymyositis brings along with it: muscle pain and stiffness, muscle weakness, joint pain and stiffness, problems with swallowing and irregular heart rhythms if the heart muscle becomes inflamed. One autoimmune disease usually brings one or two of its friends along with it.
In 2007, I was told I only had only six months to a year to live, as they say the risk of cancer is the highest within the first year of diagnosis. My perspective towards everything changed that day. Until that day, all I did was study. From then on, not only did my perspective towards life change, but I had to completely change my lifestyle. Simple things like tying my hair and wearing cotton clothes and normal shoes would feel super heavy on my body.
I am truly blessed to have had a bunch of angels around me since 2007 providing a helpful network of support, including mentors, friends, family and colleagues. I am grateful to each and every one of you for being part of my roller coaster life.
I believe I live this tough life as I am tough enough to fight it. Living all alone in England and struggling each day, from managing my symptoms through chemotherapy to the unexpected flare ups and surgeries, makes me discover my new thresholds. Even if you are living with family, every single one of us has to fight our own battle on our own only because in this end you have to be your own hero! This Buddhist quote gives me great comfort: ‘No one saves us but ourselves. No one can and no one may. We must walk the path.’
Sometimes you have to be your own hero. But, live, love, laugh and never give up.
Prabhjot is an electronics engineer, lecturer, tutor/mentor and blogger. She has polymyositis / inflammatory myopathy and was diagnosed in 2007. She loves to teach, travel, read, gardening and explore new places, living by the mantra ‘one day at a time’. For the past three years, as her health deteriorated, she has been wheelchair bound. Prabhjot has started to raise awareness of her rare disease by writing blogs, inspired by her chemotherapy experience in 2017 – the only current treatment option for her symptoms.