102 ~ Born anti norm ~

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.

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Prior to December 2016, I underestimated the depths of one word:

LIFE 📉📈

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.

Feel it.
Inspirate it.

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

Heart hammered

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

I’m sinking…

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

Its black

Whats happening???

A vague frantic shuffle

A faint voice calling my name

I’m here –

I try to respond

No coaction.

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

Now immobilized.

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”

They related.

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…

https://kayborninmay.wordpress.com/2018/08/26/86-the-most-hazardous-zone/

Usually these symptoms resolve on condition, action is hastened. Major risks are involved if not…

God forbid!!

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.

Aameen.

---

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