234 ~ Unveiling the invisibility – 1/2 ~ – Swimming Through The Waves

The poem below was initially composed after a Small Fiber Sensory Polyneuropathy flare-up during Ramadhaan. Part 1 of these 2 chapters flowed more with the aim of trying to paint a detailed visual of the invisible because it’s difficult for an onlooker or able-bodied people to comprehend the implication of flare-ups. Hence the title.

Part 2 elaborates on intravenous administration and was added on at the time of my own Gastroparesis flare. (For whoever wondered where I disappeared off the radar lol. Battling health under the restrictions of lockdown level one and 2 was rough. Alhamdulillah extremely grateful for the new concessions)

At the same time I followed the story of @diary.of.a.spoonie when she fainted from severe pain and vomiting after she was denied certain anti-sickness meds and IV fluids for an extended amount of hours based on faking assumptions by staff in one particular ward. Fortunately, she was later moved to a Gastro ward and cleared completely by the mental health team for not faking her illnesses and treated seriously.

These topics are sensitive but have to be addressed! Let those of us who have the resources and voices speak on behalf of all who cannot! Fight for the present and future. #MedicalGaslighting is a real wide-spread issue and cannot be condoned.

Descriptions fail my attempt of gathering words to explain

The reality of life masked behind invisible ongoing pain

Due to various factors, sometimes it fluctuates high and other times low

Unless assistance is required, I barely utter a word so none will ever know

How do I make people fathom; the light brush of a cool breeze

Can often make us cave in with electric-like shocks upon our knees

“An exegeration because she looks fine, so how can it be this bad?

If the pain becomes severe as she claims it to be” they carelessly add

Perhaps if only for a few minutes you were to feel the burns of sandpapering begin

We’d be acknowledged for the strength carrying us through life in allodynic skin

If you were to feel the sparks of chromatic lightning repeatedly strike

A realization will dawn; this is no mental deficit of us being psych

If you were to feel the movement of clothing likened to your skin being peeled off

Consideration will enter, not leaving place for anyone to express disbelief or scoff

If every hair follicle resembled thorns pressing into your scalp

Will you manage to continue life normally or plead for help

If you were to feel liquids dagger your intestines with crippling twists

As the result of a stomach paralysis called Gastroparesis that coexists

If you were to feel the weakness from a dysfunctional digestive process

Will we still be denied our rights to supplementary intravenous access

If you were to feel the repercussions of nutrients in our bodies being deplete

Will we be wavered away based on the untrue notion of “she’s probably lazy to eat”

If you were to retch basic medication and liquids until nothing more remains in your gut

Will the desperate need for further research, knowledge, and skill improve somewhat

If the dehydration dragged you down to an extremely high level of ketones

And your well fleshed physique turned into pallid skin clothed on bones

If you were to feel the multi-faceted consequences from damage of autonomic nerves

Will more professionals take a stand for the care DYS orphaned community deserves

If you were to face the helplessness when entering war with flares

What will be your reaction to the dread of figurative nightmares

If you were immersed in the fatigue induced activism lead by way of experience

You’d perceive the difficulty of constantly battling against medical ignorance

The concerns driven forward here are not intended as an ill-willed attack or disrespect

They’re amplified echoes from all fighters alike who beg to be treated with respect

If possible, kindly join us in educating others or participating in the movement

So we can reduce the number of years to build a team and receive treatment

Uncertainty looms over the future, but we persist knocking the doors of hope and ease to open

With reliance upon the All-powerful who’s mercy makes our least expected dreams happen

In the meantime, hang tightly on 99 beautiful names so our hearts may remain strong

And by means of cultivated hope, we shall gasp in awe at the good set to come along

We often offer words of support by telling one another “hang in there / hang on for a while, give it time” and encouragement likewise. But a thought occurred, let’s be specific. Give people grounds to hang on.

When you’re lost and hear these words, you aren’t even sure what should you hang onto, because even building hope sometimes seems uneffective. However, from each one of his 99 exclusive name’s, oceans of solace flow in rhythmic waves, tuning the hearts beat towards its forgotten goal of hanging on.