The pain that one undergoes whether it is a physical or a mental agony or at times both together can be seldom understood by others around the individual. We at Mums and stories believe in sharing those stories that could make a difference in someone’s life, perhaps of the mum featured by talking on it or those who could be inspired by a courageous mum.
This is the story of Pooja Sharma Rao who is an online content consultant/writer/editor/translator by profession and a blogger too. She has also worked earlier as a radio announcer and as a lecturer. She is a mum, a poet and someone who battles a condition called fibromyalgia. She is also a voracious reader, a tea connoisseur, loves to travel and has been deeply influenced by Sufi and Zen philosophy.
Sharing her journey with Mums and Stories, Pooja says, “I had a great childhood, am an only child, lived and studied in Shimla all my growing up years. I was diagnosed with fibromyalgia only about 6 months ago but was diagnosed with Osteoid Oesteoma long back in teenage phase and it was very detrimental to a lot of choices I made because health was always fragile
Fibromyalgia has no cure as such only pain and symptom management. It’s an everyday battle because the muscular-skeletal disorder affects each survivor differently, some have body pains, others headaches, others a numbness in muscles, loss of movement in joints or grip, often followed by brain fog, sometimes loss of memory, depression, inability to be active mentally and physically. I also underwent partial hearing loss and dizziness often.
My daughter is just eight years and a very curious and active child. We used to do a lot of creative and other activities earlier both indoors and outdoors. But now am unable to do them now most of the time, so yes she feels disappointed at times though she knows about my health issues and is also my greatest support.
I have battled depression and a few other mental health issues along side. She does see me struggling with my everyday tasks, her school tasks in which she needs assistance and tries to accommodate as much as she can. Sometimes just going to a park with her or dropping her to her karate class tires me.
Being a Montessori child though, she is very independent and strong emotionally as well as intelligent enough to understand a lot beyond her age.
I took work from home option long back after she was born so have been in that mode since last eight years, thankfully my industry (content/blogging/publishing) allows me that freedom and space but have now cut down on my volume of work as I cannot do much screen time because my most affected part remains my neck and shoulders and also due to brain fog and memory issues. The altered curvature of my neck bone causes postural issues too, so working on keyboards and screens is not very comfortable.”
Talking about the stigma and the myths on people facing such conditions Pooja shares, “There are many chronic illnesses mostly mental, but also many physical that are invisible like Fibromyalgia which for most others it is thus non-existent. I faced this apathy even when struggling with depression. People would just tell me to snap out of it call you names like tragic heroine, melodrama queen.
Sometimes even the closest to you do not understand why you need to nap more often or rest more frequently or why you are fatigued more than someone much older. Yes often at work or even in families it is treated as a falsehood, or an excuse to be a shirker and this insensitivity often adds to the depression and the stress that often triggers more physical symptoms in conditions like fibromyalgia.
I surely want to say to parents, family members of any one suffering from an invisible chronic condition, please don’t be insensitive, that is the least you can do. If you can’t help do not demean or reduce the survivor’s struggle with their illness. Create and share awareness if you can. Even small practical help like reminding them about check-ups, helping them in household chores, spending some time with the sufferer, asking about their day having kind conversations helps a lot.
My daughter has been very supportive and so have been my friends both near me and from across the world. The ones near offer logistic support and those away often bring the much needed smile and wishes.
Also my blogging community and my social media family along with my professional groups have been largely supportive showing sensitivity towards my special needs now.
I live one day at a time and that has nothing to do with Fibromyalgia. I am a practising Sufi and Zen follower, so I do not plan ahead like 5 years from now. Give each day, each moment your best, could be your last is the philosophy I live by. So all I have is a brief now and I give it my best colour, the rest is a blur.
Being a parent is a special privilege, as you raise a next generation human being who could actually change the future world, but it is at best co-learning, not I teach-you learn ever.
I have received the best support from my late father who did a lot of cliché “mum” things for me when I was growing up –like talking periods. Even in my long illness he was a much greater support than my mother so I believe that motherhood/fatherhood needs to now give way to a more inclusive parenthood.”
As a wrap up Pooja does mention, “When not working or reading I blog and learn life lessons with my daughter.” She says, her poetry is about her conversations with life and the pauses in between.
We found this to be an awesome story. Hope you found something to be inspired too.