Published after much trepidation.
I recalled being urged to write out the things we feel most “afraid” in terms of people’s reaction & understanding towards it.
The keypoints intended to highlight are:
Although I have an overall jubilation, chronic illness doesn’t always have bright rosy pictures painted to it. At certain juncture there are only thorns that make us bleed in streams.
For instance, the incident related below.
I tried to let the scene of the emotions that upsurged during the aftermath, play in front of normal peoples minds..
So a general realisation of – consideration – can be extended towards the chronic community.
Hopeful that by not masking my innermost feelings..
It gives someone else the courage to speak out & break the stigma of meltdowns being frowned upon or considered a sign of weakness, whereas it is the contrary.
And last but not least, to show that after hitting the ocean bed with a sudden or extended overload of trauma, you always arise back up with sterling gems & pearls – in terms of morals, strength & a steering force.
Prior to December 2016, I underestimated the depths of one word:
Until ongoing perils became the norm.
Until the prognosis / life expectancy⏳ became not few months or years…
But a matter of nanosecond overturns ⚕️⌚
I learnt to find my eternity & joy in the moment of now, the existence of what IS
At night I close my eyes with gratitude for another chapter added in the annal of my life, yet unsure whether I would awaken gazing unto the sky of a different heaven, or the infiltrate of dawn
Either of 2 gifts 🎁
Upon awakening I open my eyes (slowly – pupil constriction) with glee at the prospect of being afforded the opportunity of another day..
The ability to create from a combination of new & surplus resources.
And of course a purpose in – merely being – perchance I am unable to do anything at all.
There’s a life force coursing through your veins.
Yes! I still am. Just in a unique way.
When you are aware of any oncoming minute potentially becoming your last…
The minute of now becomes well exploited
With this mind-set I awoke on
< 21/10/2018 >
Sunday – Fun day – Hard way
Recieved a message from a relative who wished to visit in the afternoon.
Most days I dress to my best lol, it stimulates a greater sense of vibrancy within…
But my shower was scheduled for that evening so I decided to chill in pjs as both chores cannot be done in close time proximity.
I done nothing at all other than becoming excited to see a visitor
Whos company induced a desire in me to speak a little (by whisper with the bipap vent on)
Why not try wherever I can?
Will stop if I feel odd.
As if it were that simple.
Before I could realise
I cast myself into the ghastly end
In every part of my body I felt it thud
Aspirating rate lurched
The bipap machine force accelerates with sounds (automatically)
*Being funny & trying to record it*
It’s ok. I shall be fine… Concentrate on inhaling deeper, expand your lungs, then it’ll calm down
I coached myself.
Well, who do you think you’re fooling?! They scram in unison.
Scribbled a quick request for someone to spring into action
But by then I already felt a zzzzzzzzzz
Sizzling type of sensations as cardiac output reduced & seemed to center only around the chest area
The alarming pattern began:
Numbness, iciness, stiffness, bluish – blackish pallor
Proceeded up my neck, chin, lips, mouth
As it overtook my entire face & head
My body caved in
Veins constricted causing a temporary paralysis of muscles & limbs
Help, help, help
Someone help me pleeeeeez
A partial consciousness pleaded
But my lips could not part nor could a whisper emit
Open my eyes
I need to see
Its soo dark
A vague frantic shuffle
A faint voice calling my name
I’m here –
I try to respond
Then it permeates deeper!
The iciness of the undercurrent engulfs me with all its capacity…
My arms become numb & hands curl inwards
Followed by the legs
What world is this?
Why can’t I move?
Will I come out?
After approximately an hour my body returned to a stable & composed state
These lungs were drowning in their own excess fluid
The amount of water required for a full day or night of bipap (vent o2) usage shockingly finished in a few hours
“Your heart rate skidded from 100+ to 51, then it jumped from one number to another”
Mom was distraught, a brother was paranoid, these attacks invaded their sleep & dreams.
I hadn’t thought it would occur a second time…& took a risk of little extra exertion not considering the hazardous repercussions.
And everything was so hazy, I could not not recall my correct age until a couple of days later, when I finally asked a friend who’s the same age…
Usually these symptoms resolve on condition, action is hastened. Major risks are involved if not…
Legs should be tilted upright immediately, head slightly lowered (for me) & body turned onto the side so the tongue is not swallowed or I do not choke.
** Any other tips, please do share.
After being assisted to eat etc..
Exhausted, I layed my head back & willed my eyes to sleep
Whilst pondering over the entire ordeal
2 couplets appeared & repeated itself
I will live to the best I can
With the tools in my hands.
The full after-effects didn’t yet thwack
Until 2 days later…
** You might be shocked to hear the statistics of people who testify the alteration of chronic illness being an isolating path
The only friends most have are online, far in the same country & abroad
And although I cannot express sufficient gratitude for being blessed with multitudes of people around
This was quite an isolated point
No one knew what to say
My family was worried…..
They supplicated & prayed
The formula for miracles & hopes!
Here I stroke more brushes of paint for you to see a raw image entailing the after-effects of such an encounter
Due to most healthy & also a fraction of the chronic community (understandably) being at a loss for words when illnesses differ
Some are unable to read our posts because it’s heart breaking
We go about life dealing with trauma in our respective ways
However, my mind roamed…
Not for sympathy or help
Are “professionals” open to the latest research conducted?
(to come in upcoming posts God willing)
Are “professionals” willing to hear our view points?
Will there be some sort of co-operation?
Or will the hypochondriac notion deter advanced diagnostic methods?
I mean, the topic is not centered around me!
I am merely sharing my story to dispel misconceptions so all of us waging these battles can recieve deserved attention.
Another question bugged:
Have people acquired the art of conversing with us?
So more can regain their stance & feel wholly accepted..
Words can hurt. But certain forms of silence kills.
I made peace with everything.
The hard way.
* It is not wrong to seek assistance for our emotional well-being, Infact necessary whichever way is deemed appropriate, however;
My instance differed
For a couple of hours I searched
Wondering what should be learnt?
From scattered pieces of seared hurt?
Perhaps you are being shredded
For an effulgence to be entrusted
You are being trained to reassess your “companions” for an extensive reason
Immaterial bonds encaging the soul have to be ripped for conserving ray’s to infiltrate..
Solitary experiences made me afix my gaze & soul with 1 – From whom there is no abandonment.
We’re bound to feel an ache
By looking at the wrong place.
Yen timeless love?
Wifi yourself above
After all, friends & family cannot accompany me thenceforth the prelude point
I’ve only ever belonged to him
Thus, I welcome this segregated walk, head up high, with complete confidence in my guide.. He prepares us ahead of time
Consider it an honor. His assignmemt of the strength conferred upon you is sufficient to carry this weight
A weight so great
A weight another would drown in despair
A weight who else would be able to bear?
Had they been made to feel what I felt….
So after a little meltdown
I straightened my crown
Turned towards to a few points of Magical revivals
And reminded these diseases I am the monarch in charge
I was born anti norm
To outdo medical records