'OUR SILENT BATTLE JUST GOES ON AND ON'
THIS MONTH OF MARCH MARKS THE 'NATIONAL DAY OF AWARENESS FOR MULTIPLE
As a Dedication to those suffering from this Horrific and Devastating Disease, including myself
I decided to write a poem in their honour In America, there is a lot more support for this illness than we have here in Australia
However,here in Australia, we don't have even a Foundation. I am hoping to raise money from the sale of the Two Children's Books that I have just written and are to be published and a A Book of My Best Poems. I am also hoping to get some financial assistance because I am going to be a guest on one of our Current Affair Programs.
I hope this is successful because I wanted to try and have an establishment for people over 50 built to help people with not only this, but other rare Diseases, who cannot afford private nursing.
When this happens, people my age have to go into a Nursing Home where the very old men and
OUR SILENT BATTLE JUST GOES ON AND ON
A lot of us are lucky in our lives because we’re healthy till we’re old
All we ever suffer from in life is the occasional bouts of coughs and colds
That terrible migraine that makes us so sick we’re up half the night
Those viral infections that appear out of nowhere, that make us sick for days.
Yes, all of these things can leave us feeling so bad we have to visit our G.P.’S.
But, one day like me, you find you have symptoms like you’ve never had before
Things that are not clear to understand, even your doctors don’t know what’s wrong
It could be this or that is said many times as our symptoms are getting worse
Let’s get more tests done and more scans to see what’s making you so ill.
We wait again thinking “what can it be? Could I have the great Big C inside me?
In the meantime we talk to our Psychiatrist about our depressed state of mind
We visit a Neurologist who does his tests to check what might be changed
Then the day we’ve dreaded finally arrives and we each have to face the truth
We’re told that from clinical signs, blood tests and scans that were done
We’re suffering from a very rare and incurable Neurodegenerative Disease.
We look into our Specialist’s face to ask what this disease is called
He gets serious and says “Multiple Systems Atrophy, in short MSA"
After days of waking up with painful stiff, rigid legs and arms every day
Constantly losing our balance,having more tremors than we can count
It’s making sense to our Neurologists, now we are praying it will go away.
I’ve found out that we are all different with symptoms of this Disease
It takes over our bodies, giving us difficulties making it hard to cope
The blurring in my eyes is worse, I’ve had my glasses changed many times
Wearing pull-ups daily helps prevent persistent incontinence problems of mine
I find this distressing I would rather wear much more pretty undies instead
I wear a bag because my gastro-system won’t work as well as it should
I wish I didn’t have to wear a bag every day it really is depressing to go through
However, this was something that saved my life so I guess wearing it now is good.
It’s so embarrassing going out in public, I have to hide the tremors in my hands
I’m afraid to open my mouth to speak, my speech is slurred, people don’t understand
The MSA which is responsible for these symptoms destroys my life day by day
I wish things had turned out differently more than you could possibly know
I don’t how much time is left only that as each day passes I feel it disappear
For all who are suffering from this rare neurodegenerative and Nasty Disease
Just think how much better our lives would be and happier too, my dear friends
If we could have been with our families and not endured this illness every day
Lying in bed each day I think about better pathways we could have been on
We can't give up on life we’re in this together forever to the end we’ll stay.
- Multiple System Atrophy Awareness
Poem written as a Tribute to the second year of the National Day of Multiple System Atrophy Awareness, dedicated to all those with this Disease.
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