Six months away from reaching six years (of being in the chronic club) – the average period taken for Dysautonomia to be diagnosed. I’m fortunate to be diagnosed at approximately 2 years into this estimated time frame and express profuse gratitude for being priveleged with lifestyle management resources.
Being the best ambassador for yourself as well as others who are even more lost, comes with great responsibility. A determined will accompanied by undying effort.
It means staying up to date with the latest articles, videos, information, and research conducted in US universities and laboratories by autonomic specialists in the various sectors. Taking notes, absorbing the information, then breaking up the chunks into digestible and comprehensible pieces before presenting them before others.
Alhamdulillah I was also granted the opportunity to participate in the 4 day global Dysautonomia conference. An informative programme held annually by Dysautonomia International. This year it was free and virtual due to covid. Check out our Instagram page @life_with_dys for a few snippets. More information will be shared once the links are sent out to registered participants.
So while I fully appreciate the favor of having a diagnosis which wins part of the battle, I cannot undermine the larger part which extends towards the fight for minimal healthcare – for only one physician to be a PCP (primary care physician)
I have an amazing chiropractor, (physiotherapist currently in CT for her medical internship), as well as a great biokineticist, but essentially – the duo / trio rely on working more effectively in conformity with a PCP. They have voiced concerns of also being a bit afraid and slightly hesitant to attempt treatments that may assist with one part of my condition while setting off another part into crisis mode and not having emergency backup.
Following the aftermath of this close to cardiac arrest episode, my mind was in an apathetic state and unexplainable tangle. Grateful for survival and an extended breath of life to pursue more goals, but simultaneously detached and disconnected from my personal circle knowing they hadn’t experienced anything similar. Hence the absence and lack of chats.
Not being defiant towards qadr, instead, in order to perceive a subtle answer, I questioned as to why we have to constantly fight for every. Single. Thing.
It’s impossible for us as humans to be high-spirited all the time. My patience had worn-out. Incensed, frustrated, reasoning backtracked, and exhausted of speaking my lungs breathless. Through the weariness of it all, I forgot my own spoken reminders and wondered if any benefit bounced off from continuing these laborious efforts…
Innumerable blessings and goodness had certainly come forth by means of sharing my experiences. Swimming Through The Waves hasn’t reached 3 years of being meaningless. You don’t progress and come this far to achieve an accolade for hitting greater heights only to then quit.
Press pause on your chain of activity and thoughts. Take extra time to:
Remember your path has not been set without purpose. Reinforce the reasons that got you started. The ripples of positive impact it has made, and last but not least, the pellucid waves of changes that have resulted.
Realign to your aspirations and objectives
Ignite the raging courage in your narratives
From many other illnesses, a multiplex Dysautonomia was hand-picked and chosen
My heart espies irrefutable signs of great wisdom, purpose, and trusted reason
انه سميع قريب
Once in a while, rarity feels lonesome but I find solace knowing my creator is near
Even when my voice feels unheard or drowned out, he is always there to hear
و لم اكن بدعائك رب شقيا
How can I forget the delight of invocation answered time and time again
Likewise, none of these words leave my lips slipping away in vain
So chin up your position of advocacy and activism
With reliance in the All-powerful to make it blossom
Instill certainty of the command BE – when everything will fall into place
Swim on through the waves of time with renewed hope and grace
Between the closing and opening of your eyes, the universe alternates
As day unfolds from night you don’t know what ease, blessing, or gift awaits
I moved on letting events flow in a harmonious pattern, not forcing anything to be. The Qur’aan & 99 beautiful names infused my spirit with strength to strive…
Lo & behold, a month later I opened the inbox to a surprise that stopped me in my tracks. One message that has changed the course of our entire future…