258 ~ Light on the horizon – Part 7 ~

The remaining course of 2018 has already been documented on the blog from chapters 51 – 119 so I will not elucidate or go into depth again. A year that passed by rather dramatically with ongoing episodes of respiratory struggles, cyanosis, transient stroke-like attacks until

December 2018

While randomly chatting to a family member, mum mentioned we were on the lookout for a physiotherapist to assist me with Pulmonary Rehabilitation. This family member searched on a group and re-directed us towards a compassionate, good-hearted, and understanding physiotherapist. Without much delay, she visited, listened attentively to my story, then set out a basic plan to kick-start.

The chapters titled Breathe your best expounds on my Pulmonary Rehabilitation journey which evolved into biokinetics 2 years later as of November 2020.






Becoming self-complacent isn’t an option. Taking care of a body that’s ravaged by a multi-faceted condition calls for demanding work. Physio / rehab / bio takes a lot out of us. I feel like I can sleep for days after 😂🤭. It is very hard but simultaneously enjoyable when you have someone who makes it a pleasurable and rewarding experience. I actually look forward to my weekly sessions with @aqeelachouglaybio which is a little unusual for some with Dys.

Unwavering determination entwined by commitment and ongoing persistent efforts of sticking to the rehabilitation program resulted in slow but simultaneous hard earned marked improvements. Most importantly, the benefits that stack up in your favor are worthwhile every bit of all the hard effort 🏋️‍♀️💪

My healthcare providers were happy with the progress which they pointed out to be a fruited outcome of being compliant and diligent. Other patients complain about not seeing results but there’s only so far a professional can go, patients have to also play an active role by doing as they’re advised.

From a declined percentage of only 28% lung function remaining, my capacity steadily increased and rapid deterioration thereby slowed down. Of course this doesn’t imply our respiratory conditions are cured overnight or have vanished entirely. It is but an imperative approach to improve one’s overall quality of life.

People have a common misconception that if you undergo certain therapies or treatments, voila! Your entire condition is solved and has dissappeared. The question we’re often posed with – but why are you still sick if you undergoing treatment?


The point of having an interdisciplinary care team is to keep us less disabled as possible. In terms of physiotherapy or biokinetics, the aim is to decrease breathlessness / exertional dyspnea. To enable us to perform more tasks by ourselves. To build and solidify physical resistance so we do not become deconditioned. To mostly keep symptoms on a manageable level so we can live and function to our utmost best, along with these multiple conditions still being rooted in our DNA – even if the primary factor wasn’t genetics.

(DNA is the hereditary material in humans and almost all other organisms. Genes are made up of DNA)

We have to pour unconditional energy and focus into whatever programs are structured for us if our souls crave to soak in the magic of living to the Dysautonomia version of ‘fullest’.

Magical moments floated in the air…

But in order to reach it I had to withstand the force of challenges that ensued when we finally landed at the PH specialist who then handed me over to the cardiologist, who in turn dismissed us without conducting the Tilt Table Test my neuro requested, nor the High Altitude Simulation we had requested as related in the 10 chapter series


After the indicated turnover of events my heart regained determination and enthusiasm on account of the following verses

و ربنا الرحمان المستعان على ما تصفون

Our compassionate rabb is an assistant against that which they assert

Praise be to him for illumined words that heal our hearts to move pass the hurt

All incomprehensible matters are encompassed by his divine knowledge

And our plans are made to naught when he sees it will be a disadvantage

اعلموا ان الله على كل شيء قدير و ان الله قد احاط بكل شيء علما

I finally decided – if no one can assist me, I am going to do what it takes by myself.. Somehow I will figure out a way like I always research, read, ask, interlink answers and do what needs to be done to manage my condition..

نعم المولى و نعم النصير

Oh seeker:

When Allah is your foremost aid, dreams are never impossible.. They can come into existence

So send your wishes up into the sky as you never know when it will strike a moment of acceptance

You never know…

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