Friday 14 October 2016

Tonight we'll see equal @rnib



Tonight's the night
To see through sound
I won't be alone
Feeling blindly around
Both Mike and Rach
With specs designed
Will know what it's like
For me being blind
Funnily enough
They're pretty nervous
About what they'll see
Is that the purpose
Well yes, but no
It's more a case
That doing this
Puts them in my place
Just for one night
So they can see
What life can be like
For me being me
Truth be told
I'm nervous as well
How will they cope?
Only time will tell
But one thing's for sure
No matter how they fair
After this experience
We'll have much to share

An evening out with MS

This evening I'm going out.
And not just going out to a friend's house or a church meeting, but out out.

(Not quite this out out though:

Into London with the family to the see through sound concert raising money for RNIB.



This is a big deal.
A really big deal.
It involves a lot of different forms of transport
which all cause pain in different ways;
new places I don't know and so can't see in my mind;
decisions on the fly which are not easy with disability;
anxiety about how it will be
and excitement to be going.

We're staying overnight in London at a budget hotel which Rachel thinks this is an amazing treat.  But in reality it's because neither Mike or I think I'll have the energy to cope with getting home late in the evening. And besides, who doesn't love a cooked breakfast in the morning.
But even that will take a lot of energy.

http://mscalling.blogspot.co.uk/2015/11/spoon-theory-and-me.html

In all, this trip will take a couple of days worth of energy, possibly even a week's worth.  It's not like it used to be, or like it is for most people is it?  But it's possible to do and it's worth it.

To pull this off, the whole week around today has been planned to the smallest detail.  And here, with the help of cat photos, is what today and tonight will look....

Stay in bed lying down until 11am


Keep my feet up until 2pm when we leave


Stay as calm as possible, allowing Mike to take control of the travel


Lie down at hotel for as long as possible before concert


Enjoy the concert without embarrassing Rachel


Sleep as late as possible tomorrow morning


Come home, possibly after finding some Pokemon, 
depending on how I feel and how sight, pain and fatigue are doing

Hopefully that'll mean fun for us all and I won't end up in a crazy mess.  
Time will tell. 
Watch this space.

Cat photos taken by Inge Wallumrod and used under Creative Commons License.

Thursday 6 October 2016

Each new day #nationalpoetryday #messages #sayitwithapoem



Each new day
When we're out 
Others scowl
Eyes roll about
But I can't see
Those who frown
Or if they stare
If they're not keen
On my wheelchair
And to be honest
I don't care!

It's MY chair
It gets ME out
And in its yellow
It might shout
And not blend in
But why SHOULD I?

Should I hide
Or stay inside
Well, yes
Some say
But I WILL NOT 
Hide away

Not until 
I can't get out
Until I'm stuck
And even then
We'll find a way
Not sure how
But that's for 
Another day

Until then 
I will try
The best I can
To live my life
Coz this is just
How it must be.

It's not the way
That we had planned
But with my chair 
White stick in hand
I'll live my life
The way I hoped
With loved ones near
With as little fear
As we can muster

Though that's often hard
But disabled card
Gives access
To caring ones
So off we go
To try it out
Somewhere new
It might be nowt
Worth writing 
Home about
But what's to lose?

Every day's
A chance to say
Hi world
What you got for me?
What shall I see?
What shall we do?

My vision's just
As huge as ever
Physical limits never
Seem to stop the mind
In it's dreaming
Nor stop God
In His leading
Of my life
In my calling
So I'll just
Keep on following
Don't know where
It is going
But the rowers
Keep on rowing
We've no earthly
Way of knowing
What will come
Or what is going
To happen.

In fact
This could be you
Ten years from now
Or only a few
Months away.
What would YOU say
If YOU could see
What will be
Would you change
Your life
Or will your life 
Change you
What should you 
Do today
What have you 
Delayed

Take the bull
By the horns
Hold on tight
And charge
Don't hold back
Until 
You lack
The choice
And even then
Rejoice
Whilst you have
A voice
Rejoice
In each new day

be brave my girl #nationalpoetryday #sayitwithapoem #messages




be brave my girl
though life's a swirl
of change and fear
I'm always near
in all unknown
you're not alone
just come to mum
if you are glum
I'll listen well
to what you tell
no matter what
to every jot
the good and bad
troubles you had
leave them with me
then you'll see
the way to go
I won't say no
I'm here for you
in all you do

Say it with a Poem #nationalpoetryday


Today on national poetry day
We're challenged to write a message
Anything at all you want to say
It doesn't have to be impressive

Or perhaps I should say, that whatever you say
Is impressive, I want to hear it!
So write it down or speak it out
Don't hide away your message

Mine to you is imperfect
But it comes right from my heart
Words have power to change the world
Now's the time to start.

Message from Grandad #NationalPoetryDay #SayItWithAPoem #Messages



Ride a cock horse
To Banbury cross
To see a fine lady
Upon a white horse
With rings on her fingers
And bells on her toes
She shall have music 

Wherever she goes

This is the rhyme
I often do tell
Grandad would sing
Before he was unwell
Then the Alzheimer's
It took him away
He couldn't sing to us
When we went to stay


Next memory
He is sat in a chair
Not recognising
We were even there
But always we knew
Even then as a child
He loved us to visit
It was there in his smile


Thirty years on
He is still on my mind
Dad of my dad
He always was kind
Now when I hear
This is old nursery rhyme
Grandad brings a message
From back then in time