Sure Ways to Mental Resilience With a Rare Disease

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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 disease, whether rare or ordinary, have one thing in common – their desire to regain mental health and fitness.

Right from our school days, we are taught the importance – and the never-ending nature – of performing, which will continue till we are finally laid to rest in peace. For most of us today, the gap between our individual capacity to perform and the expectations therefrom has enlarged, which is a key reason why we suffer from various mental ailments. I was diagnosed with Isaacs’ Syndrome at a time (in 2016) when my father was battling Parkinson’s disease, and my diagnosis traumatized everyone in the family.

I was wrong to assume that only my parents’ mental health would be affected. But I do think today’s younger generation is more vulnerable. I learned this lesson the hard way as my situation was unique and no one around me had ever faced anything similar. But before concluding that, as a family, we should mainly focus on protecting our mental equilibrium in tandem with my treatment, we discussed this issue with my doctors, referred to several books, and consulted people who had somewhat similar encounters. In the process, I witnessed my parents embracing this new reality, distinctly different from the conventional lifestyle in which no one discussed mental health.

In my experience, the non-clinical support was simple and stress-free, and consequently more useful. I was always curious to try alternative therapies and never cared whether it was sourced from some ancient medical literature or a test tube as long as it demonstrated some healing qualities.

Acceptance

The first step towards regaining my mental equilibrium was to accept and try balancing the emotional upheaval accompanying my failures and look to tackle this personal catastrophe with a positive attitude. My diagnosis taught me to reinvent and puzzle over mistakes instead of dwelling on the things I got right. In the process, I discovered that my biggest strength was my mental flexibility, in adapting to situations that most people don’t even dare to imagine.

Try to tame the monkey mind and enjoy the little moments

It took many days for me to understand my body and mind, but soon it was clear that my path to recovery would comprise a series of baby steps. I started to focus on doing simple things like taking walks, gardening, reading books, spending time with my family, and pursuing hobbies like playing table tennis and writing about my experiences.

Staying Informed

Although I felt like an alien at times, I found it important to educate myself and my family about the disease. I studied international research papers, joined peer group platforms, and posed my doubts to my doctors as part of this exercise.

Though Google can be a friend in this regard, checking the source of the information we derive from Google is important, as there are many sites that spread misinformation, often created with the objective of scamming visitors. Also, relying completely on a single source is not recommended as information is scarce on rare diseases. As I diligently followed Ayurveda, books by Vasanth Lad were good references in educating me about the power of simple and right living, in terms of consuming food and basic medicines.

Keeping my distance from unnecessary suggestions  

Today, everyone seems to know about everything when it comes to healthcare, religion, and politics. Naturally, suggestions poured in from people who had never had anything to do with medicines. I was recommended exercise by people who did not know that it is not the solution to all health problems. Understanding which therapies and treatments work for different people is important.

Maintaining Self-Motivation

Positive affirmation can be inspiring, and it made me feel better each day. I took notes from the real-life examples of some knights in shining armour and the things they did differently to emerge victorious in unexpected situations. I came across some inspirational books like We Fed an Island by José Andrés (a true story with lessons on crisis management), and The Secret (which teaches how a sufficiently strong mind can positively change life). I also found inspiration in movies like Rocky, in which the protagonist demonstrated a never-give-up attitude in any situation.

Laughter has healing qualities

In this aspect, the credit goes to my father who was going through a lot himself but still told me never to take things too seriously. “You should keep smiling and feel lucky to get proper treatment under good doctors”, he would say.

I understood that life can be hard at times, and we must find our smiles along the way. I used to watch movies and series that made me feel cheerful and light-hearted. I remember laughing and smiling often to reduce stress even in contexts that did not entirely permit it.

Can I Zen?

I was introduced to mind-body meditation during my Ayurvedic treatment, and it worked wonders for me. This technique lowers the respiration rate and helps the mind heal. Practicing it regularly for a month taught me how to relax and sleep better. At times, I felt bereft of my body and my pains seemed to vanish.

Tai chi

I felt great practicing graceful Tai chi moves, which I found helpful in maintaining where I was in terms of my health and, coming to terms with my situation. However, I could not continue it for long as my body was not sufficiently strong enough to withstand the moves. Despite realizing its benefits, I could not find any nearby expert who could physically observe and correct my moves.

Mindfulness

I practiced basic breathing exercises which helped me relax, curbed my negative thoughts, and lowered my anxiety levels. At the same time, the intensity of some of the techniques aggravated my fasciculations. This further taught me about the advisability of closely observing what works but also practicing under the supervision of an expert initially.

Due to this significant change in my life and my lifestyle, I may no longer have the same ambitions I had earlier, but I do hope that my years of darkness have made me wiser about myself and that this wisdom may yet prove useful. As the idiom goes, only a golden vessel can contain the milk of a lioness. Likewise, I believe that God chooses special vessels or individuals to withstand these kinds of changes in potentially inspirational ways.

Although many experiments on how to strengthen our mental health to fight rare diseases are happening around the globe, I felt it was time to take up individual initiatives in terms of preparing to combat the disease, repairing the body subsequently, and doing it all with flair.

My bottom line? We can’t live a positive life with a negative mind.

DISCLAIMER

The views expressed in this article are the author’s own and do not represent any kind of medical advice.

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