I look ok

Inwardly groans
My bag of bones
Pounding on my Scone
Daylight has come

Post nasal drip
Hanging for first sip of tea
What ran over me
Feel like a tip

Abnormal you say
Nope this is normal
Everyday my body’s in disarray

How to explain
My journey of pain
People say
I look ok
Let’s try that again

It’s rare and chronic
My invisible disease
Not visible to others
Not even our mother’s

I’ve tried so long
To name my illness
But it’s rare
And when people try to name it
It’s just not there

I will name it here
Mastocytosis
Systemic (In the body)
Cutaneous (In the skin)
Where to begin
Wait there’s more
Arthritis, High Blood Pressure and PTSD

Masto for short
Mast cells form part of the immune system
Too many I’ve got
Deformed a lot

Releasing their nastiness
Wreaking havoc upon my body
They degenerate( that’s breakdown)
Releasing toxins and histamines

No part of my body safe
As randomly they strafe
The list of troubles they cause
Is long
Below just some
You’ll get the gist
Bone pain
Muscle pain
Joint pain
Stomach pain and cramp
Nausea
Headache
Fatigue
Foggy head
Skin rash and itch
The list goes on

We all have mast cells
But mine behave badly

Rare with no cure
Disease is going nowhere
Symptoms are treated
With pills, injections, manipulations and lifestyle adjustments

Mast cells randomly degranulate
Affecting bones, muscles, joints, head, stomach or skin

Many things will trigger
Noise
Bright Lights
Strong smells, perfume, paint chemicals
Some foods
Atmospheric changes
Physical activity
Too hot too cold
Stress
Dust and pollen
The list goes on

People have said
Have you tried
Naturopathathy
Fish oil
Herbal tea
Mindfulness
Immersion in the sea
The list goes on

Some quite belligerently
Say if you haven’t tried this
How can you expect to be well

I no longer try to explain
I simply say
I’ve got a rare autoimmune disease

People have said
Oh yeah my uncle’s got that
Are you better yet?
You bowled today, you must be ok
And my favourite
How’s your back?
To which I reply my back is certainly part of the problem
But I’m trying to put it behind me

It’s not all bad
I’m glad to say good parts of many days
Keep the doldrums at bay

My doctors (my medical team)
Are Top shelf
My friends and family’s love
Brings me out of myself

With warranty expired
There’s maintenance required
I’ve found an accord with my words
And I’ll say this
Pain is my constant companion but it’ll never be my friend

So I’ll groan and moan
Quiver and shake
But when I’m awake
I will try to think like you

I look ok

Written by Andrew Ballard

© Copyright Andrew Ballard 2020 – do not republish without written permission from Andrew Ballard. Please contact TAMS to obtain permission.

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