Breathing Time

Freedom took my breath away
And I thought I could fly
But I sit here in stillness
Waiting for the clock to tick
For time to change the world

Unseeing eyes brush past
Speaking as if they know
But no-one truly touches
Another’s empty space

The moon takes hold of the sun
Watching in the cool darkness
As the heavens slide earthwards
And fold into the jagged horizon
Each myth tells its story
In cycles of forgotten history
Shifting infinite shapes that show
Connecting years of light
That reach my eyes too late

Glance sideways at the clock face
The second-hand freezes with my heart
Time stops for one breath-held moment
Until the stars tilt and fall again
The inevitable journey begins
Speeding up and expanding space
As I watch everything drift away
Beyond the unseen boundaries of life
From where I stand
I walk away and wonder
Where my history will go
Which star will tell my story

I start to run towards the sunset
Gaining momentum from each stride
Reaching out to grasp the fire
Igniting within white light
Engulfed by cool flames
Here then gone
I breathe the freedom
And fly in the stillness

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Zebras

Each zebra body is very wonky, I feel like a knackered donkey
Damn joints go out more than me, but you can never truly see
Such daily battle through the pain, living with genetic chains.

I have Ehlers-Danlos Syndrome (EDS) Hypermobility Type III
and wrote this little poem for EDS awareness month in May.

Why the zebra? Trainee doctors are told ~ when you hear hooves think horses not zebras.

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EDS Awareness Month allows us to highlight that it is imperative that accurate knowledge of the Ehlers-Danlos syndromes and hypermobility spectrum disorders is increased within the medical community.

We are fighting to ensure our conditions are recognised and that, with the new criteria, patients are more likely to receive an early diagnosis and consistent care and management plans.

May Awareness Month is a time for coming together as a community and fighting for change. This is an opportunity to get involved with your charity, help raise awareness and educate others about the Ehlers-Danlos syndromes and hypermobility spectrum disorders and the issues faced by patients due to misdiagnosis and lack of knowledge about the conditions.

It is a time to work together for change and we need everyone to get involved; we all have a part to play. Distributing leaflets to your local GP surgery, telling 10 people about EDS, fundraising and sharing on social media – there is a way for us all to help. Find out more about your local support group and join together with us via social media – let’s amplify the message and make our invisible VISIBLE!