I thought I would have a go at poetry to express my thoughts. I suffer with Dyslexia so it may be rubbish but I wanted to share with you what I came up with.
Lots of Love,
As I waddle like a penguin, my defected collagen impersonates a gremlin.
Cracks, in and out my joints loudly scream,
Without caution, my body bends and breaks again.
Left, right, up and down circular motions,
Whether I stand or lay, my fragile skin remains broken.
Black, blue, green and purple, all beautiful shades in a rainbow,
All out on show for the world to see that my body has taken another blow.
As the Earth orbits around the globe,
I travel around many different places,
Not visiting fun landmarks but wasting hours staring at hospital walls.
Listening to others search for a cure, with saddened faces.
Doctors orders, another day of rest is required.
I am summoneded to debt or to battle on with tolerance.
Anxiety grows inside of me poisioning my veins
Why I am so differently wired?
Infection after infection, chronic illness is a true test of resilience.
Who will remain your friend and who will abandon you.
No choice but to adapt to my surroundings and welcome transilience.
Deep breathes in and exhales out, I must not snap and break as easily as bamboo.
Everyday I pop pills like smarties to conquer on,
Thinking about the future and what is to come.
An overactive mind, questioning is it fair to pass EDS on to a daughter or a son.
One second , I feel everything and the next I am benumbed.
Ehlers Danlos Syndrome you have taken part of my mind, part of my soul.
Yet, now I accept you, you will always be there.
You have had the power, all the control.
Now I am going to fight you to live, not just exist
Even in those hard times of sorrow and despair.
Like what you see?