Tuesday, 10 December 2013

When You Live With Chronic Illness

Here's a not so little poem thing I wrote...obviously from the point of view of someone who progressively became ill as that is what I know...

When You Live With Chronic Illness 
Distress can be quite high
Not only are you grieving 
For pieces of your life you lost
The hard work you enjoyed
Even work you forced yourself to do
When that was something you could manage
Not always easy but enough
Now you struggle to get food
Into the house and then prepared
You often have to choose
To eat or do anything else
It's not like you can do both
or the hundreds of other things
you would do as well
in the distant past
when your body didn't feel like hell
You adapt and survive
It can hurt to be alive
Each time your are treated as lazy
or mentally unable
to do the physical things to keep this life
Is a slap upon the face
a blow of epic proportions
Nothing of understanding
how this came to be
or that it is quite real
from strangers of the public
But worse the medical field
I can keep myself more positive
when I stay away from that
Having to explain just how severe
The low functioning body affects
Every single aspect of of the life I can now lead
I am not in control of my body
I am not in control of my mind
I am not in control of my soul
My objective is get back to my art
The creativity I have to share
To be able to work on a large scale
I'm not scared of hard work
If I could do it then I would
With support now I am finding in places
I can move faster to get to this goal
No support in the times of of inability
Slow my progress and challenge me more
The hurdles at times seem overwhelming
I have felt I can't go on any more
When suffering is terribly dreadful
Ignored by the ones who can help
The trust in anything from out side me
Is as shaky as trust in myself
To be able to live through those moments
The peace that is felt close to death
Knowing that when the end comes
It is a release of all suffering
No wonder sometimes that is enticing
But love and other reasons to live
Create my work, share moments of love
Joy and laughter
Learn to Live again
I don't need much for a little improvement
Pull the rug yet again
I will do my best to survive
After being a whirlwind of activity
I've had to painfully learn to go slow motion
Moving slowly respecting limits my body placed on me
Without too much interruption
From a system apparently punishing the sick
I can flow back into an ability to self care
At least enough to maintain
The precarious times of re-mission
Scary crashes relapse hardly managing
Basics needed to survive.
I am learning to not so fear them
Doesn't stop them hitting me hard
I've learnt that each moment is passing
Pain nor bliss lasts a lifetime it's mixed
All that I really am asking
Is support just to get through the blips
Never knowing how long they will be
Or when they will strike again
Bit of a long ramble after the medical history records
I knew it would be a hard read due to the way I have felt viewed...
I was very right at times, especially the doctor that scared me
I'm feeling quite serene
I am making peace with having been at times
treated like a piece of shit,
With hostility
or other times
with dignity, compassion and care...
PeaceArtistLainey 14.14 Tuesday 10th December 2013.
Edited 15.00...I have edited this a bit...not my usual thing...usually I leave them as I wrote them even if I think after how to change it...it is a bit like sketching and making the picture from the ideas sketched down. I have only been able to sketch on occasion for so long too...I made it even longer!

I don't write to gain attention
I write because it is me expressing me
Any attention and interaction that attracts
Is valued from the heart
Even ones I didn't enjoy
The ones that hurt me deep
The ones that nourished parts of me
I couldn't reach myself
Thank you all those who share with me
In any way you do
I keep on falling in love with you
Even when you lead me astray
Being led astray means many things
Away from all I love or back to mend my heart
My life, my body, my soul
My soul was never hurt
Just loves to play it's part
It comes through with my art.
PeaceArtistLainey 16.33 Tuesday 10th December 2013.
This I didn't edit just added the last line 2 minutes after I thought it was finished. That is the thing with art of any kind maybe, we can always twiddle and tweak it a bit more to make it refined and closer to the truth or image we wish to portray so most people will see it the way it is meant or the image being presented...tired now and stiff...time to rest my weary bones...and meditate on peace...unless monkey mind takes over and tries to take the pish...it's if I can laugh at it that lets me to let go...I have this annoying narrator...who can ruin or make the show....that's why I laugh at myself a lot....some don't expect that with chronic illness...but oddly as it sounds the ones who get my humour are the ones who understand and take me seriously as well...