Welcome to my Blog. I am UntanglingT,
Before you will unfold a few ramblings and some poetry,
Little insights into my life, my heart and my mind,
I hope it helps you to Have Courage & Be Kind.
An introduction I feel is required,
To help you accept why I am so tired.
If I can help you understand the label “Chronically ill”,
Perhaps you’ll have some empathy as I climb these steep hills.
“She’s a Porphyria Patient?” The Doctors queried,
They googled my condition and I became more weary.
Am I in safe hands? Can they comprehend the severity
Of the symptoms that occur with such irregularity?
A few years down the line,
And the Doctors changed their minds
“The Porphyria’s inactive. Something else causes her pain.
Is it psychosomatic?” Oh no. They think I’m insane.
I went through more tests, and eventually,
Discovered Endometriosis. My step-sister had diagnosed me.
Back to the doctor to book another scan
To see a specialist who had experienced it first-hand.
After years of living in pain, I thought I had some control
But out of the blue, I hit the deck. I was out cold.
Back to the Doctor who looked worriedly at me,
And said urgently, “I’m fast-tracking you to Cardiology”
More tests. I look down. There are so many wires,
“What does this one do?” I heard myself enquire,
He did not answer, I look up to see a strange look on his face,
“A low resting heart rate, but extra beats” he says, amazed.
Many more months and a few more tests, but eventually,
Diagnosis! Arrhythmogenic Cardiomyopathy.
Over a decade has passed since I received
My first Chronic diagnosis, of which there are three.
Now here I am, well into my recovery,
Adjustments a plenty so I don’t set off my ICD.
Thank you taking the time to join my journey,
Upon which we will be