She woke up on a lovely Friday morning as the raindrops fell pitter-patter on the window. She covered her ears tightly and thought of the wonderful times when she was a child. The same sound would make her jump out of the bed, look at the clouds and stretch her hands out of the window to touch the water. How she would gaze endlessly at the sky hoping to spot a rainbow! And yet, if she didn’t, she would wear a smile that would last through the day. Rain, after all, was her favourite season. Her mom would bring her a colourful raincoat before she left for the school and she would insist that she wants an umbrella, that she is in class seven and can manage the windy weather without getting drenched. How she always wanted to get drenched in the rain and blame it on the umbrella!
She is all of thirty four now and wants the rain to stop when she’s sleeping. She hates the disturbing sound of pitter-patter on the window. She can’t stretch her hand out of the window for long. She hates carrying the umbrella. It hurts, it hurts a lot.
So she woke up on that Friday morning to the loud sound of the gentle pitter-patter. She struggled in vain to eliminate the sound covering her ears tightly with the quilt. But she suffered from hypersensitivity to sound and had to get up. Oh, she could not get up since she had a terrible headache, as if hundreds of hammers were striking it repeatedly. Lifting her head seemed like the toughest task in the world. At the same time her legs were very restless. Waist down the pain was so unbearable she felt like detaching her limbs for a while. But how could she even think about it? Her shoulders, her arms, her fingers were too stiff to even rub the eyes. They call it morning stiffness. How does it matter whatever they call it. All she wanted was a hot cup of tea and a hot water bath. That would do the trick and make her move in a while, a couple of hours or so. For some hours or so.
But she wondered if she should have the tea with all that nausea and acidity. Or would a strong cup of ginger tea would give her some relief with the aches? But how and when would she be able to reach the kitchen and keep the pan on the stove? And how would she manage to brush her teeth? And how would she lift the pan and filter the tea without dropping it? And as she struggled with her thoughts and her pain, she felt the aroma of the tea. Hypersensitivity to smell! Her husband was already in the kitchen. With all that pain and restlessness she didn’t realise he wasn’t beside her all this while. Three years of Fibromyalgia and he knew what she went through every morning, every day. On some days, she really couldn’t even make the morning cup of tea. And he came to her rescue!
Fibromyalgia had turned her world upside down. But she was happy he was always there for her. And so were her parents and friends. The girl who could walk endlessly was now unable to travel an hour to meet her friends and go shopping. Sitting, standing, sleeping continuously added to the woes. But they understood and stayed connected.
Of course, there are millions who don’t understand. But she can’t blame them for it. There’s hardly any awareness about Fibromyalgia. So how would they understand that why she can’t work fulltime in a leading MNC! That why she forgets to call them on their special days or forgets to invite them home (Fibro fog leads to cognitive dysfunction and memory impairment). That why she doesn’t cook much anymore. That why she can’t run around and do all the chores when there are functions and gatherings. That why she can’t be the perfect host she was. That why she can’t eat all the yummy dishes they used to cook and she always loved (food allergies). That why she keeps yawning all the time, even during important meetings (Chronic Fatigue Syndrome / side effects of medication). That why she can’t climb all the stairs and change train routes to reach somewhere. That why she can’t lift her own shopping bags or even a little baby. That why she keeps falling all the time. That why most of her conversations end up with how unbearable her pain is, however she tries to avoid talking about it. That why she has been complaining about fever for three years now, every single day!
This is the story of every person with Fibromyalgia. Some of us have people around who understand. Some of us have absolutely no one who cares. It hurts all the time, everywhere. It starts with unbearable pain but gradually one gets used to it or convinces oneself that this is how it is going to be till the end. But that’s fine as we know there’s no cure and each one of us tries to find a way to deal with it and manage the life. We do not look sick. We do not look disabled. And that, unfortunately, is a problem. People do not believe we are sick or unable to do several things. What hurts the most is the indifference of people. None of us is looking for sympathy. All we need is awareness. The more people know about it, the more they understand. And then we don’t have to hear words like, “You do not look sick, it’s all in your head.” It is not in our heads and it is proven. Some countries give social security disability benefits to people with Fibromyalgia. But in India, have a long way to go. And we need your support, not monetary, but from the heart.
There’s a rainbow somewhere and that’s you. Let us see it.
- Fibromyalgia’s Invisible Face (painfighter.wordpress.com)
- Morgan Freeman: A major celebrity goes public with Fibromyalgia (africanamericanfibromyalgiafoundation.com)
- The REAL Fibromyalgia Awareness Video (fibromodem.wordpress.com)