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Showing posts from May, 2014

This illness inside of me

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What can I say that will express this illness inside of me,  so huge it overwhelms all of me on every level?
What can I say to make it all right again? How can I find a pathway to restore me? Is it even possible? I am too blank in the head Too empty of thought Too weak in my hands Too uncoordinated in my movement Too cut off from my motor control Too dark in my vision Too uncontrolled in my eye muscles To look at a page And hold a pen And think anything coherent Or new Or accurate Or discerning enough Then write word after word in a straight line on a page I am too breathless from my swollen stomach pushing against my diaphragm Too physically numb In too much pain in too many parts of me My head My face My lips My tongue My gums My teeth My eyes My eyebrows My nose My ears My skin

Thirty Questions you can ask the Government

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Dear Norman Lamb,

1. Please can you explain to us why Myalgic Encephalomyelitis is still not treated in the UK as a neurological disease?
2. Why there is no biomedical treatment pathway on the NHS for people with Myalgic Encephalomyelitis?
3. Why there is no accurate training programme within the NHS to make sure that all professionals from paramedics, through to nurses, orderlies and to doctors and consultants have an accurate medical picture of the disease and know how to provide safe treatment and procedures to people with ME?
4. Why is there no hospital or GP provision for the safe passage of people with ME who suffer from noise, light, chemical sensitivity and need separate waiting areas and room to lie down and require longer amounts of time for procedures and investigations and appointments due to the nature of their illness and disability ?
5. Why there is no system of reaching the house and bed bound and treating the most severely affected at home?
6. Why are there no biomedica…

ME Awareness Week 2014

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Good luck, prayers and love to us all this week !

I cannot begin to convey

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I cannot even articulate my distress
About the neglect
The denial
The mistreatment and the abandonment
That I feel
About my illness.
I cannot even explain
The seriousness of this disease
The severity
The torment
The agony in every moment
I experience
I cannot even express 
What it is like to not know what to do to heal myself
The uncertainty
The lack of investigation
The lack of understanding 
The danger that puts
my health in
Every moment of every day
I cannot begin to convey
The horrendous physical experience
Of being continually pushed into deep 
Total paralysis
By the slightest wrong noise 
Not just once or twice
But continually every day
I cannot describe
The feeling that overwhelms me
When my muscles lose solidity
Scream
Torment
Tremble
Shake
Crash
Collapse
Stop working
Stop holding me 
Stop moving me
Stop feeling
Intensify their pain
Become flaccid and cold
Numbing my body and my thoughts with them
I cannot seem to get anyone to truly comprehend
What that might be like
Like crashing on a roller coaster
Like falling endless…