The story of NABANITA
Hi! I am Nabanita, from India. I will share my story today.
I used to be ill since childhood, and was subsequently diagnosed with MCTD, with Raynaud’s, Incompetent Cardia, Dilated Esophagus, Interstitial Lung Disease, Major Depression, Neuropathy, Diffuse Scleroderma and Secondary Fibromyalgia.
I had come to believe that I would never recover, and that things would only get worse with time. My doctor is very efficient, compassionate and supportive, but he too told me once, that living is important, and whatever pain I need to suffer, I should be able to accept that as a necessary condition of living with MCTD.
For years I largely accepted pain.
MCTD or Mixed Connective Tissue Disease is complex, and damn hard to deal with (not every case is similar, though).
More often than not, MCTD involves almost everything in the body. With MCTD, you are continuously aware of every part every inch every corner of the body….because they’re either throbbing or burning with pain, or giving you a stabbing sensation….and so many other kinds of pain…often difficult to understand, or something that is nondescript. And your life is also at risk…because it involves the lungs to begin with, and then often, goes on to involve other vital organs.
Last year around this time, I was bed-ridden. Then after a lot of effort, I could walk with a walking stick. That gave me terrible back ache. I was bound in a chain of pains, depression and despair.
Nerve pain medication and Neuro Rehabilitation made me walk again normally, but with the lockdown my sessions stopped, and I had to shut myself up within my small apartment. My outdoor walks stopped. Then suddenly one morning I woke up to the strangest flare, to find myself pigmented with red, pink, purple, blue and brown rashes. It was as if I wore a blue eyeshadow.
This was eventually diagnosed as heliotropic rash, and my doctor put me on HCQs and doubled the dosage of immunosuppressive medicine that I was on since 2012. The more I swallowed these pills, and several others through the day, the more I looked at myself, the more horrified I became. But then I also became keener on finding out more ways for my relief. I turned to several support groups and found positive support I could rely on.
Since August, 2020, I started on working towards a new journey.
My aim was a more restrictive diet to alleviate inflammation, more simple regular exercise, and most importantly, relaxation, stress reduction and building hope and joy , more forgiving than complaining. Also, searching for alternative paths that make me less reliant on popping pills as last resort to any pain or flare or problem. I kept reading up, making notes, reading again, and re-addressing my symptoms to find out the roots of those.
The more I read, the more convinced I was, that the root of all unexplained unresolved illnesses, also autoimmune conditions, is trauma. Even trauma carried forth in genes. My doctor also had told me this several times. Trauma and overwhelming stress make inherent illnesses show up, which without that stress, or external environmental condition, probably would never have shown up.
Recognising that the damage done would only intensify and aggravate with further carrying on the burden of trauma, came to me like an epiphany, looking at my multicoloured face. Everybody had told me this before, time and again, but I didn’t know how to manage. I guess, the epiphanic moment of recognition only comes when you are emotionally mature, and prepared for it.
My occupational therapist had told me, if I learn how to respect pain, pain will also respect me. I worked very hard to understand this. And slowly, I practised several things that I had previously thought to be bogus, unimportant and impossible…. Mindful eating, mindful breathing, mindful thinking, and learning to respect my body, and listening to it, forgiving its weaknesses and limitations.
I went slow with the changes, but I was full of hope reading about people’s positive experiences.
I was experimenting with and cooking a lot of crunchy salads and one pot meals, all of which were really delicious.
But even several months on, like this, there weren’t apparent sign that these were working. Then suddenly something really painful happened, which ultimately became a boon.
I also suffer from extreme xerostomia or dry mouth because of MCTD and also because it is the side effect of several medicines that I am on. My teeth have been bad specially through my stay at home, and I couldn’t go for the regular visits to my dentist. In the middle of October I fractured a tooth, and since, couldn’t eat anything at all. I sought recipes for smoothies in my support groups. A friend suggested raw and fresh veggie and fruit smoothies, and they were a game changer.
I also do a lot of other small things which I thought could be useful, and they worked. This is not to say that I am not I’ll any more, but my symptoms have definitely come within control. I can realise that I am a lot better than I used to be. Not only have my joint flexibility and mobilty have improved, my gut is also way better. Surprisingly, my inflammation markers are within normal range now.
What also amazes me, is that, in my effort to forgive the sources of my trauma, deep-rooted trauma, agony and hate, I no longer bear the burden of sorrow, regret, anger and general suffering of the mind, that had been part of me always. I am at peace, and slightly disengaged with discomforts, and happy, as I have never been before.
I shall be glad if my journey can motivate anybody, and/or if you get any relief from anything that has relieved me, in some way or the other.
#nevergiveup
#forgiveandheal