Embracing The Challenges

I had the opportunity to participate in a video production for Rare Disease Day 2025, and it was a truly wonderful experience. The shooting took place in an entirely different setting, with a fresh atmosphere that sparked creativity and excitement. Despite the new environment and the playful vibes, we all shared a common goal: to raise awareness about rare diseases and highlight the challenges faced by those who live with them.

Growing up with spinal muscular atrophy (SMA) has been a journey filled with ups and downs. Living with a progressive condition like mine is often incredibly exhausting; the daily realities of chronic fatigue and persistent pain can deeply impact my productivity and overall well-being. There are moments when it feels like I am carrying an invisible weight, and the burden becomes increasingly overwhelming.

Noticing the changes with my body

After the shooting wrapped up, I noticed the toll it had taken on my body. As soon as I returned home, I was struck by an unsettling numbness in my hands and feet, while a sense of weakness washed over my neck and shoulders. The experience left me feeling drained, and I found myself unable to engage in any activities for the rest of the day. It’s frustrating to confront the reality that my body is gradually becoming weaker, a truth I have come to accept but still struggle with emotionally.

Lately, I've found myself in a particularly challenging space. It’s not stemming from a single event or issue, but rather the relentless, exhausting fight for my health that often leaves me feeling defeated. Reflecting on my past, I remember a time when my health concerns didn’t overshadow my life completely. Now, however, I feel a pressing need for a reprieve — a desire to escape into a state of ignorant bliss, if only for a moment. My health challenges demand attention and have become persistent players in the narrative of my life, constantly vying for the spotlight. I long to rewrite this script, to create a story where I am not merely defined by my struggles.

Talk to the experts

Nonetheless, I recognise that feeling overwhelmed and occasionally burnt out does not grant me the license to ignore my problems. My condition is a serious matter; it’s not just a fleeting illness that I can dismiss for a few days. It is a core aspect of my existence that requires ongoing attention and management.

I consulted with a medical expert to discuss my concerns in detail. My physiotherapist introduced me to a series of targeted exercises designed to alleviate the persistent back and neck pain that often plagues me.

Additionally, I was advised to monitor my oxygen levels whenever I feel an unusual wave of fatigue. Having an oximeter readily available at home has proven to be a valuable tool in this regard. On particularly challenging days, I find comfort in wearing my BiPAP machine. This device offers relief, allowing me to breathe more easily and take necessary breaks when my body demands rest.

Gratitude aides my mental health

One of the most profound transformations in my life has come from embracing the practice of gratitude. It has enabled me to acknowledge and appreciate the brighter moments in my life, even amid the shadows cast by negativity. While it doesn’t eliminate the difficult feelings I experience, gratitude serves as a protective barrier against letting them completely dominate my existence. It enables me to look beyond moments of darkness and recognize the promise of brighter days that lie ahead

Although I continue to encounter feelings of sadness and frustration along my journey, the practice of gratitude has bolstered my resilience significantly. It has taught me the powerful lesson that it is indeed possible to coexist with both joy and sorrow. This understanding has enriched my mental strength, arming me with the fortitude needed to confront the battle and challenges that accompany living with Spinal Muscular Atrophy (SMA).

While I wholeheartedly enjoy the creative aspect of producing the video and contributing to raising awareness in our society, I can’t shake off the reality that SMA is a constant presence in my life. No matter what challenges arise, I know I must persevere, embrace the changes in my body, and continue to adapt as I navigate the unpredictable journey ahead.

I will never let SMA take away my spirit,

Ainaa