Fibromylgia: There’s A Rainbow Somewhere!

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!

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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.

 

 

Anuradha Khanna Pentapalli, founder of Rippletors, is a versatile copywriter with over 11 years of experience in advertising. She specializes in brand building, online communication and loves to create compelling ads copy for brands across categories. She authors of a multitude of blogs including Mumbai Local Trains, As I Look at Life, Vegetarian Recipes and a blog on Photography.

Her latest blog focuses on creating awareness about a debilitating condition called Fibromyalgia. She was diagnosed with it three years ago and realized that the worst part about the condition is the lack of awareness in India and across the world. Do have a look at her blog Fibromyalgia Awareness and join her in raising awareness about the life-altering condition.

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Comments

  1. A good friend of mine has fibromyalgia, so I am familiar with some of the symptoms you wrote about. There is more awareness of it now in the US, but it is still very much like what you describe. Thanks for this powerful message.
    Galen Pearl recently posted..The Dance of FearMy Profile

  2. I don’t think I ever cried reading a post as much as i do now, never. Just few minutes ago, I was telling my friend I needed help to get out of bed as today’s pain is really unbearable. Yes, a lot of awareness is what we need. It hurts like hell but rare are the ones who believe because they can’t get a proof. Thank you so much for sharing.
    Nikky44 recently posted..I died at the age of 44My Profile

    • I can understand Nikky. I am sorry it made you cry :(
      Hey try moving your toes and feet and other joints in circular motion before you get up from the bed. Stay there for a while until the muscles open up. and try to get into a hot shower whenever you are ready to move.
      Anuradha recently posted..The choice is always ours!My Profile

  3. Thanks for giving me the opportunity to write the post on your blog! I can’t describe how grateful I am as I discover people with the same condition. You have helped us connect Corinne… Thanks again!
    Anuradha Khanna Pentapalli recently posted..The choice is always ours!My Profile

    • Anu, like I told you, I was unaware myself till I ‘met’ you and Sagarika. Now, I will do anything I can to create awareness. So let me know how I can help. I’m so glad you’ve connected with more people via this post – let’s get the word out. ♥

  4. I really was not aware of this sickness…now I am. People who suffer are really brave hearts. <3

  5. I have heard of this illness but I find that it is much better to understand if I read about the testimony of someone who is going through it. Thank you for having Anuradha to enlighten us, Corinne! And Anuradha, you are a wonderful inspiration to people who are going through the same thing. God bless you both. <3 :-)

  6. Very touching…to be honest I did not know such a thing existed. But hats off to those people who face this thing every day :)
    Privy Trifles recently posted..I wishMy Profile

  7. Wow..this was a very important post that is something that everyone should read. Definitely a condition that is overlooked and the symptoms can be really misunderstood and judged…Going to share this on fb!

  8. I was not aware of the insidious, continual pain and disability associated with this illness. Now, I am enlightened. I will pray that a cure can be found for those who suffer and that more will become aware and understanding of this illness that strikes so many. With Jessica, I’m sharing this on Facebook. The word needs to get out there!
    Blessings to you and to all those suffering from this condition.
    Martha Orlando recently posted..Ooh, Shiny!My Profile

  9. Rachna Parmar
    Twitter:
    says:

    Anu, that is such a touching post! I also had no clue about Fibromyalgia till you and Sagarika starting talking about it. I am so happy that you are trying to spread awareness. Not only is there a problem with lack of awareness in India but also the tendency to hide that furthers the problem. I want to reach out and hold your hand because I know that is all you need. Thank you Corinne for having Anu here and thank you Anu for this heartfelt post. Hugs!
    Rachna Parmar recently posted..Tick trouble!My Profile

  10. Had heard the term Fibromyalgia and its symptoms but never knew the pain behind all of it.
    Thanks for enlightening, will definitely do my bit to spread the awareness for Fibromyalgia.
    You are a brave lady… wishing you the very best.

  11. @Martha, @Jessica, @Rachna – Thank you ladies for the lovely comments! And thanks a lot for sharing… it would reach out to so many this way!
    Anuradha recently posted..The choice is always ours!My Profile

  12. I am hearing about this for the first time. Thanks for bringing this to our notice. This post was so very touching and gave us the symptoms of this disease of which I had no clue previously.

    Thanks dearest Corinne for asking Anu to write this post and Anu, thanks for sharing this with all of us.

    Joy always,
    Susan

  13. I was not aware of this condition until I read this. These are few of the times when I realize there are so many people hurting in ways I cannot even imagine. Thank you for sharing and my prayers go out to all those with this condition. Despite this, I believe they are all so blessed. Thank you for sharing.
    Anne recently posted..Connect the DotsMy Profile

  14. That was such a touching post, Anuradha. The words that struck a chord were ‘we don’t look sick.’ That makes it hard to ask for help since all you get then are skeptical looks. It is good to see you reaching out to others, for often that is all that is needed — to connect with others in the same predicament. Thank you for sharing. The term has come out of medical dictionary and taken a form in your words.

  15. excellent post… awareness is critically important, while it maynot be curable there are helpful ways of treating,through sharing…one of the great benefits to the Internet. many years ago I was diagnosed with chronic fatigue syndrome with symptoms of fibromyalgia, but it was later discovered that I suffered from depression. of course this was 12/13 years ago when even less was known. I commend you for sharing your experience and thank you Corinne for opening up your blog. Seeking to understand and compassion can go along ways. the more it is discussed, the more awareness brought about through sharing can lead us in a positive direction…often times people doubt what they cannot see and fear what they don’t understand…I believe the only way to do that is by making noise!
    Amy recently posted..The Role of “Mommy” is now being played by “Mom”My Profile

  16. Thanks for writing this post to create awareness about this condition. You are one courageous lady. Hats off to your strength…
    Lazy Pineapple recently posted..a million little piecesMy Profile

  17. Nicely written. Sharing this article. Thanks to Corinne to host this article :-)
    sangeeta khanna recently posted..Can we use an app to track our food and health goals?My Profile

  18. I never knew such a condition existed and thanks for sharing it with us anuradha. Utmost respect gal and yes the only disability in life is a bad attitude. God bless you !
    Priya Sreeram recently posted..AVOCADO & JALAPENO SANDWICH – A GUEST POST BY GAURI – BLOGGER OF THE MONTHMy Profile

  19. This is the third rainbow blog I’ve been reading and what great hope the writers have. I have not handled any case of fibromyalgia. And it would be totally different from truly experiencing it rather than studying it from the medical team’s point of view. This is a great post, yes, in need of awareness and support from the government.

    Lots of love!
    melissa recently posted..The PromiseMy Profile

  20. Thank you Anuradha and Corinne for sharing this. I had no clue about fibormyalgia till I read this.
    rimly recently posted..A Friday MomentMy Profile

  21. Nilesh Srivastava says:

    Hello Anuradha, This post brings too much tears in my eyes that I can’t explain. Thanks for sharing and providing me this information.

  22. It’s horrible..I know many people with this disease and watch them suffer..daily and there is little you can do for them…..It’s a hard disease ….As always….XOXOXOXOX

  23. Lokesh Muniyal says:

    It hurts the most when you know that your efforts will do very little for someone who is in a baneful situation like this..Terrifying…Fibromyalgia is not known to many..This article should reach out to the world..I didn’t even dare to read the full thing..I just can’t empathize..It scares me a lot..

  24. I have seen one of my friend suffer from ‘Fibromyalgia before falling down to cancer. She always had tiff with her family regarding the pain killers she was taking.
    Not many are aware of this condition, and it is wonderful for Anuradha and people like you who can create awareness among people about this.

  25. Larry Lewis says:

    May i take the liberty of saying exercising often is a very important part of fibromyalgia treatment. While difficult at first, regular exercise often reduces pain symptoms and fatigue. It’s so critical to slowly add fitness into ones routine and it will make a difference.

  26. Elizabeth Young says:

    An awesome story about the life of someone with fibromyalgia. Thank you so much for facilitating this story Corinne and for getting the important word about this debilitating illness out there.

  27. Hi Anu, don’t know if you remember me…but here goes…I truly believe that whatever life throws on us, we do have the inner strength to face it, you just have to believe in yourself and be patient. Your words touched me… I feel proud that I know such a person who smiles in the face of adversity and brings cheer to this world. May God bless you always and keep you smiling always! Thanks for letting us know about this condition, I will spread the word in my own way.

  28. Thank you, you gave me new ideas for my website. I hope this doesn’t bother you that I take up this subject in my next article.Sincerely, Roger

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