Living on the edge
Not knowing what will come
A doctor asking too much
That sets you back a week or so.
A doctor that wants you to go away
People who don't know ME
Who agree with what the doctor says.
Living on the edge
It's not a nice place to be,
Even when you have ME
Unkind words set you back
When trying hard to be free of ME
I hope this won't happen to me.
How silly people can be.
Some push you towards the edge.
Some doctors and people are kind.
Kind words go a long way.
Being bullied into things,
You feel you want to disappear.
Life's lonely on the edge.
Special people help you through.
Kind words help too.
Go slowly is the best
Climbing a mole hill you can do.
Big mountains are best left alone,
Till you have the energy to take it on,
In time you will get there,
It won't be this year,
It could be the next.
With the right doctor
Helping you through
Who leaves you in control?
Please listen to us
We are the ones who know this illness the best.
Jade problems (2006)
So many problems.
What can you do?
When you tell people
This is you.
This is what you can do
How you do it,
This is the limit,
To your day.
No energy to spare
To give away.
Energy taken in so many ways,
Noise will take it away
Moving another
Lifting a cup
How do you explain?
This is you
Some days are better
Than others.
Overdo your day,
It ruins the others.
This is me.
My life with ME.
Memories (2004, aged 14)
Feel the wind in my hair once again.
Would like to see the sky
Blue and cloudy when you look up high.
Even feel the rain on my face once again.
Feel the warmth of the sun.
Look at hills and mountains
Some that reach the sky.
See birds and bees fly around.
Walk on the beach.
Feel the sand in my feet
Go into the water knee deep.
This would be wonderful.
Most of all see the light
When it enters my room
Let it hit my crystal
Sparkle colours around my room.
These are things you miss
And even more you forget
As it's been so long
It's hard to remember.
What these things are like
This is the sad side to ME
It affects your memory
I have forgotten most of these things
What I use to know and see
Sad this has happened to me.
I hope these memories
Will come back to me.
How happy I will be,
Be able to go outside and see
These memories for real.