Weekend has just ended and sadly I couldn’t publish this blog on time.
Now that Calm Insights has completed its first year succesfully (yes, thank you), with many blogs, stories and pictures from my own life, I hope I have now made a strong network of amazing people here who appreciate my cause and have helped me build this confidence about me being a fibromyalgiac and still wanting to live life, the way I feel like.
Trust me, you have made a big difference in my life, just by choosing to read what I write and sometimes going a step further to tell me how you feel about it.
I want to tell you all about the journey, every turn it took, every setback and every tiny detail of it, but let’s keep it for some other time.
Today, I want to answer a question that many of you keep asking me frequently and I very carefully lie each time you do that!
I lie when you ask if I am doing okay, I lie when you ask if my health is alright. I lie it because I am never okay and I am never feeling alright.
That’s because it’s not simple, once I tell you I am not well, you ask my why, what’s the problem ?
And then I can’t explain it to you, because it’s too hard to explain. Yes, hard even for someone like me who is good at expressing things.
But today, I have chosen to tell you, how exactly am I feeling and why am I unwell all the time despite the beautiful things that I say life is consisting of.
Let me begin then and please know that whatever I am going to tell you is brutally true and that is the real point why I fail to describe my condition each time you ask me.
Now, to give a rough idea, I was diagnosed with an incurable, invisible, rare chronic disease called Fibromyalgia which causes pain in each inch of your body of the intensity much more than that in cancer. Other than widespread muscle pain, it causes 200+ other symptoms like insomnia, depression, restless legs, IBS, Migraine, Nausea, Muscle Stiffness and Brain fog etc.
As I said the disease is incurable and all a patient can do is keep trying different combination of medicines and alternative ways of treatment like Accupuncture, Body Massage, Psychiatric help, Physiotherapy etc.
Coming to how I am feeling right now and how has Fibromyalgia changed my life, this very same day 4 years ago, it all started and so it’s been years of physical and emotional torture on me without a moment of break.
Prior to the day it all started, I was an extremely studious kid, always wanting to do the right thing and had never faced any health problem in my life.
I am a student pursuing B.Tech, Mech at NIT WARANGAL, a student of 2013-17 batch. Since the start of my second year I have been suffering each day with the cruel pain.
Earlier, I was of the feeling that with proper care, good treatment, my dedication and right doctors, I was going to get alright one day.
Numerous hospitals, medicines, physical therapies, me searching the entire internet of every article and every detail that’s there about Fibromyalgia and trying it all on myself only to end in the hands of failure and disappointment again and again.
Back in college, I was paying for each semester in a hope to try even harder and fulfill the 75% attendance criterion, go to the labs, finish the folders and appear for every cycle of exam to finally clear the semester succesfully.
But unfortunately the bright kid in me was failing to do it all, with pin prickling and stabbing pain all over my body 24*7, my body feeling like being beaten up with iron rods all night.
My head even now when I am writing this feels like being hammered with great pressure.
My eye balls feel like being twisted and turned and are burning with pain.
My entire body, it feels as though the big kitchen knives are being stabbed at one hundred places altogether repeatedly.
My energy level, you ask?
It feels like an elephant is jumping on my body trying to break me apart.
The IBS causes intense pain in stomach.
The restless legs demand me to change position in intense pain every five minute.
Me having to feel dizzy for no reason, my heart rate going high, BP going low, I sometimes feel like this is it, I am going to die the very next moment.
But unfortunately I don’t, somehow, I am again found battling in the never ending cycle of excruciating pain, the burden of having to repeat my years of study not because I am poor at it but I am suffering from a damn incurable disease.
My friends have all graduated, those that were nowhere close to how good I was, are chilling happily every weekend, earning lacs, successfully living their lives with much lesser problems than I have.
I have the student loan to pay off and have no way out of it.
My college pays crores of money to the undeserving SC/ST candidates but they won’t even reimburse my medical fee because I am a repeater, let alone helping waive off my fees on both financial and medical grounds.
My doctors at NIMHANS, Bangalore are trying the third set of medicines on me, which unfortunately to even their surprise, has again failed to show any relief.
My parents have killed all their dreams about me doing big in my life, the star kid who was destined to make her parents proud and help her father financially and the younger siblings to complete their studies, no longer is the same old bright, active achiever that she once was.
Now all they wish for the poor kid suffering in pain day and night is that she gets better. They are adding every penny they can save to pay off my student loan.
When I am on the phone with them, sobbing but trying not to show it, they always ask me to leave college, come back home, they feel that way I won’t have to struggle in many other ways.
Sometimes on days when the killer pain shoots up, my head pains like it’s a bomb waiting to burst, my body breaking on the force of those invisible heavy rods over me;
I feel like giving up, on many such occasions. I have been to the top floor of my hostel, intending to end the pain for once.
But I come back each time without doing anything.
Is it the less courage in me or the fact that this act may end my pain but will cause never ending pain in the hearts of my parents and those who love me!
I am not yet giving up, somehow the tiny ray of hope in life never dies in me.
I hope God doesn’t disappoint me and the bundle of problems in my life vanishes magically one day when I get up.
I just hope and pray because that’s all I can do.
P.S- There is a ‘Buy me a Coffee’s button here on the same page, from where you can contribute for the treatment of my rare, invisible chronic illness called Fibromyalgia.