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This blog is another opportunity to feel grateful and thank you dear Universe: You continue to bless me with recovery and overall health.
Patients struggling with any kind of disease, either mentally or physically have one thing in common – their desire to regain fitness. In this blog I’ve tried to cover some of the ways that helped, keep my mind involved productively during rough patches.
Chronic disease refers to a medical condition that has a sudden breakout, lasts for a couple of days, and needs short-term care like fever, cold and cough, heart attack, a broken bone, etc. The core focus is to reduce and finally eliminate the symptoms. Whereas a Rare disease is not sudden in nature and takes time to manifest. Therefore, a person needs a backbone, a holistic healing approach that works both on my mind and the spirit to curb symptoms.
Time and again scientific studies have shown how our mental strength has tremendous effects on our overall being. I was fortunate to have mentors who guided me through this process while struggling with the symptoms of Isaacs’ Syndrome (a neuromuscular condition stemming from muscle hyperactivity. It is also called Neuromyotonia, Isaacs-Mertens syndrome, continuous muscle fiber activity syndrome, and Quantal squander syndrome) and Membranous Glomerulonephritis (a progressive kidney disease) apart from Lyme disease (a bacterial illness transmitted by ticks) and Glaucoma (which damages the optic nerve).
A lot of my healing credit goes to understanding the mind-body relationship and being constructively involved:
Creating a daily routine: – this helped me stay organized and achieve a work-life balance during my professional career as an investment banker when creating daily routines and schedules was as critical as implementing them. It was customary to have a things-to-do list with road maps for better time management, having the right focus, and an understanding of how the day looked like.
I adopted the same approach with a little difference that kept me on my feet, gave me something to look forward to, reminded me of things to be completed on time, and never let me give up easily. I could evaluate what was expected vs achievable.
Spend time, for a purpose: – creating awareness of rare and chronic health conditions through Ordinarily Rare was spending time on what mattered the most. Rewinding the pre-diagnosis moments gives me goosebumps when the confusion, fear, and uncertainty in the family were at their peak. I was diagnosed at a time when my father was battling Parkison’s disease and the news of my diagnosis was enough to blow the entire family apart. Those were days of isolation when we literally ran from one place to another to find whatever little information, we could get our hands on. This gap of not having access to the proper information left us very anxious and that is when I decided to start writing my experiences and share them with others to spread awareness through the platform of Ordinarily Rare.
This community-building process of sharing experiences with others had multiple perspectives with a common goal of creating awareness, came across predicted vs actual feelings, boosted productivity as it asked for serious commitment, learned contributing to someone’s growth, building the courage to face realities, learning things through discussions, and overall, enriched my experience as I discovered much about myself.
Understanding and working on priorities: – the word priority regards certain things as more important than others. I knew that treating health was of utmost priority and the rest could follow. It was well understood that taking corrective measures would boost my quality of life, stop further health complications, increase energy levels to sail through the day, help my morale, and in turn support family members.
Therefore, I spent time educating myself about the condition, made the environment more conducive to what was expected, and changed some old habits.
Set and achieve daily goals: – after prioritizing things that needed immediate attention and understanding how they would positively impact my life, I started to set goals. Though it was not an easy process as it required focus and perseverance, however, I knew it was the first step toward getting healthy again. The goals were specific in nature, relevant to my situation, time-specific, and achievable. I had daily and weekly goals written on a whiteboard that reminded me and my family of the action plan. Initially, the process was absurd yet soon we got used to it and the results were immediate.
Achieving the set goals from time to time got back my confidence level, kept me motivated, and assured me that it was the right direction, strengthen my self-help quality, and increased my inner strength.
I never stopped reading: – though keeping focused due to pain and constant redness in my eyes was challenging, I tried not to give up reading magazines, health research papers, and stories that were inspiring and entertaining.
Apart from keeping my mind involved it helped in building knowledge, solved unanswered questions, kept updated with the latest developments, and introduced new opportunities.
Do we need a reason to smile? – though finding reasons to smile did not reduce symptoms instantly yet made me trust that I was headed in the right direction.
To be honest there was so much of a time crunch during my investment banking days and this came more of an opportunity to explore my interests and do things that I enjoyed. Activities like playing table tennis, swimming, walk-in in nature, writing, etc. always had a special place in my heart, and tried one after the other to my best physical capacity. I realized how these activities acted as a stress buster, bonded me with others, and challenged the set limits. It introduced me to many newer concepts like Sports Medicine.
From Medicines to Meditation: – pre-diagnosis, I hardly understood the impact of Meditation and how it could dynamically involve and change so much within. Allopathy is a stream of scientific medicine whereas a lot within us is unscientific in nature and therefore meditation was unique in its experience.
It was a stress buster, balanced my blood pressure levels, improved sleep patterns, and digestive issues, managed pain, relaxed muscles, and enhanced the quality of my mental state which surely had positive physical effects.
The views expressed above in this article are the author’s own and do not represent any kind of medical advice.