70 ~ Care to be aware, there and share ~

Since my latter few posts consisted of Pulmonary Edema being a confirmed diagnosis & highly suspected Pulmonary Arterial Hypertension as indicated by an EKG..

Let’s take a longer walk through the feelings accompanied before & after diagnosis. Including those who haven’t recieved one up to date. As I’ve related my story stage by stage, readers have already understood the manner in which I dealt with each diagnosis presented, but there are a few points requested to address…

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Symptoms begin unexpectedly

Life evolves rigorously

You’re lost, clueless

Procrastinate the Dr’s visit putting it down to a minor issue, little knowing what lies ahead in store..

When the first aappointment is concluded, you return home dumbfounded & bewildered

Dr’s & diagnoses consist of a wild goose chase

A thought to be, simple discovery, turns into 1 dead end, a blank towering wall

1 after another

The search takes weeks

Months

Yearssss..

In between trying to grip life better, but having an unrecognised condition makes the task tedious.

You live wondering if it’s a mild condition that is manageable or will death result from unforseen complications that was supposedly phsychotic…

** Undiagnosed soldiers, please feel free to submit your story even if you wish to remain anonymous.

I’ve accepted the long winding road as a part of divine planning but gotta be frank that these thoughts are bound to cross the mind from time to time & generally ignored / pushed aside. I dont entertain or grant them a place to stay in a manner that they invade my peace, but address them with faith to save my mind from whirling with turmoil.

People are naturally scared so these innermost feelings tend to get pushed aside, but that is exactly where the damage occurs – when patients are prevented from voicing natural thoughts & fears that are not considered as negativity, only requiring a bit of extra gentle reassurance.

Many will not voice their deepest concerns because they’re shunned for the very same reason. A gun is pointed to the throat before being able to complete a sentence unfortunately. Society (besides those working in social service or therapy fields) shove pertinent matters under the carpet, these unresolved issues can have disastrous effects long term.

Sometimes people don’t need to be told anything.

They dont need to be told

“Be positive”

“Keep strong”

“Be grateful”

No be’s or do’s

Yes, there’s always someone who is worse off than another, & like I’ve mentioned a dozens of times previously, I’m grateful for my illness & immense blessings despite these challenges. But at the same time the last phrase a patient ever wants to hear is:

“At least it’s not this or at least it’s not that”.

This makes the patient feel that their condition is unvalidated, & reduced to almost a pinch of salt.

These points have their respected places, but it’s important to bear in mind; healing also occurs in simple forms; an attentive ear lended, works wonders by making invisible patients feel heard, visible & human.

Allow the person to express freely without shooting bullets. Assist them to work through those emotions.

A phsycologist definitely helps, but sometimes a patients deepest wish is for those closest to be more aware.

If a person is feeling down or having low moments for whatever reason – don’t tell them to “get over ” or “push it immediately in the past”

That stage will come at an appointed time.

Victoria Ericsson aptly mentioned:

Sometimes someone isn’t ready to see the bright side. Sometimes they need to sit with the shadow first. So be a friend & sit with them. Make the darkness beautiful.

– Victoria Erickson

This is not a path where “getting over” occurs in 1 night.

Recently I had a lovely heart warming visit from a dear cousin-sister who visited… she didn’t ask too many questions knowing talking causes undue difficulty often ending in an emergency.

Though, there were few golden words that need to be engraved in bold gold!

Only 1 word replaced at the end of a common phrase

1 word holds great worth

1 sentence rephrased transformed a bad into good

One kind sentence

Makes a difference

When entering, upon seeing me she said:

“You looking so pretty“

(Now that does NOT mean we search for flattery & I don’t want everyone to follow suit by saying the same)

The fact that she replaced “well” with any other term distinctly stood out. She was not oblivious to the diseases my body houses within or trying to make me feel better than I do, by incessantly ranting about “the good look”.

We’re grateful we don’t look as we feel, had my internal revealed itself externally, I’d be distorted beyond recognition, but at the same time this qoute sums it up:

I can’t bring myself to say out loud how much being told “good news” like, “you are looking better than ever”, has hurt me.

“But you looking good”

Me: Says the person who thinks salt is sugar 😂

This topic was my very first blog post, but I’ve composed another article pertaining to the same issue for a chronic network that will be shared once published on their side.

When leaving, she embraced me, sincerely saying:

“Please message, even if you want to scream, I’ll scream with you”

& this needs to be highlighted!

Lol, I didnt have the need to scream recently, but these are words that automatically engraved themselves in my heart. Her willingness to be there, not through smooth sailing, but difficult times, when the candle light dims & dissipates…

Knowing that when my strength wavers, someone cares to be aware, there, & share the blanket of darkness until I became grounded to light the match.

There’s no shame in saying that certain incidents tend to trigger a loss of my general composure, there are moments where the devil gets the better of me; in this case there are 2 instants;

Lean back on comrades who nurse raw, bleeding wounds & then help me stand up, placing the fallen sword in my hand again

Or

A second instance where I know my lord has granted me resistance that needs to exploited with my own hands by treating the wounds myself & get back up with aid of none, but one above.

The strength reflecting my core, mirrors the magnanimity of scars dealt with beneath the surface.

Resoluted souls

Are those

Pierced with unabated bows

Sailing afloat

Imploding blows.

Their fortitude is fueled

By a versatile tool

That keeps the soul cool

When blazing “fires” loom

Polluted minds presume

We’re unschooled fools

Thereby staying aloof.

Faith

Is our mate

That removes taints

Whilst we patiently wait.

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Some people need time coupled with assistance, some require time alone to find themselves & some require either 1 at various phases.

Time to sort out thoughts, perspectives & view of the picture in front.

Hold hands as they venture on the lane of retrieving themselves & purposes.

Once revival is restored, they will be steady & ready to confront the future.

“Getting over” may take a few days, but weeks of effort to regain a firm footing. Sometimes a reminder of certain unpleasant incidents can bring about flashbacks & the healing process has to begin anew.

*** I percieve that loved ones of the chronically ill are often at a loss how to assist, therefore elaborating extensively & sharing encounters with hope that it may better the lives of others & grant the general public an insight of what is generally hidden… after reading stories shared.

We don’t always need people to fix

Merely an added “presence”

To withstand hurled bricks

Suffices.

(Being near & physically active are not presence requisites. Presence presents itself in various forms .)

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The phases of every diagnosis vary

Some bolt like thunder heralding, rain & hail

Some like a whirlwind

Some are swallowed easily

Some resemble a gastroparesis digestive process…

(*** Gastroparesis related in chapter 10.)