Sunday, 2 December 2012

My Grandson

Welcome to the world, young, Master Rubin -

A telephone call in the early morn
Told us a baby boy was born
A grandson, for us, a third generation
After nine long months of gestation
Looking just like his dad, a beautiful boy
To stay inside mummy was his ploy
But I’m sure he’ll love the world out here
With a mummy and daddy who’ll hold him dear
What a lucky lad this boy will be
Much loved by his large family 

Monday, 1 October 2012

The North Wind doth blow .....

It’s cold. I hate it when autumn arrives
With its whistling winds and cloudy wet skies
My scrawny body with shivers is wracked
And upon it layers of clothes are stacked
Fingers lose dexterity
If I have the temerity
To try to complete the smallest of tasks
Surely it’s not too much to ask?
That I be allowed some comforting heat
While languishing in my wheelchair seat
Praying for summer sun
To give warmth to me, for one
I hide in my office, the smallest room
With lights ablaze to avoid the gloom
It’s lonely though, I have to admit
Another problem that makes this MND rather %@*^!!!

Thursday, 27 September 2012

The Brighter Side of Life!

On a more positive note
While the last thing wot I wrote
Was depressing and really quite sad
There are things going on
For which I need to be strong
Happenings which make me quite glad

My older daughter who’s married
Certainly hasn’t tarried
For she’s having a baby quite soon
My younger daughter’s engaged now
The wedding day it is planned, wow
Taking place in the month after June

So, things are occurring which are nice
Soon, I’ll be a ‘mother-in-law’, twice
And a granny, to boot, oh, what joy
My sons-in-law’, they are great
And now I really can’t wait
To see if we’ve a girl or a boy

So, I’ll fill up my time
Writing poems wot rhyme
In a happy and positive vein
Using my google ability
And computer agility
On EBay again and again!

For the arrival of a small mite
And a ceremony in white
Are what’s keeping me going for now
Choosing an outfit for a wedding
And a baby’s nice bedding
Help me remain upbeat somehow

I’m still inclined to moan
And occasionally groan
About how fate has dealt me a blow
But I’m doing my best
To pass the ‘smiley man’ test
And not be a miserable ‘so and so’!


The 'crying' game

I’m crying inside, can’t you see?
It’s because I have dreaded MND
I put on a brave face for others
Hoping that they don’t discover
How unhappy I am with my life
As I cope with the trauma and strife
And the ‘knock-on’ effects
That bloody MND does project
It’s hard to make them understand
About the really bad hand
I’ve been dealt, it’s a blow
I just want them to know
That, try as I might
To put up a fight
It’s becoming quite tough
As the ‘going’ gets rough
To think positively
Though I know it isn’t just me
Who’s affected by this
That their life isn’t just bliss
 I just need to say
That, at the end of the day
They can escape my nightmare
While I’m still left in the despair
That this awful thing brings
For, there are no swings
And roundabouts here
Just snakes, not ladders I fear
Am I really the only one
Who, when all’s said and done
Thinks that life with MND is quite crap!

Saturday, 1 September 2012

My Lovely Grandchild

It was so exciting, I’ve seen the scan and know
Just how much these modern scans can show
It’s tiny heart was beating, it’s nose was small and cute
This bonny kicking foetus really is a ‘beaut’!
As a first time granny I’m as excited as can be
Waiting for the baby to arrive for all to see

Wednesday, 29 August 2012

This Bitch, MND!

I’m crying now, most everyday
This MND won’t go away
It crept along at a slow pace
But now affects me from toes to face
The latest aspect to appear
Is loss of arm strength, and I fear
With it goes my independence
Inability to feed myself makes me tense
Increasing need to rely on others
Makes me feel like a child and its mother
My husband now has to spoon feed me
But with his bad eyesight he cannot see
He’s constantly feeding my chin, nose or cheek
I spend much of each mealtime trying hard not to shriek
‘Higher, right’, or words like this
God, when I fed my children it was ‘a piece of p**s’!
My OCD doesn’t help the situation
It only adds to my severe frustration
Can’t blow my nose or scratch an itch
I can assure you that MND is a ‘bitch’!!

Thursday, 16 August 2012

Carers and........stuff!

Having just read Steve Evans post in which he commented about carers I thought I'd relate what happened to me this morning.

When a person has to accept care from unknown persons due to disability it is a hard pill to swallow. Accepting the indignity of someone other than your family seeing, let alone touching your most private 'areas' is extremely stressful and adds to the turmoil of an intolerable decent into total dependency. So, getting to know these carers and having a relationship is as important as them understanding your complex requirements. I completely empathise with Steve when he finds constant changing of his carers particularly stressful. Not being able to communicate verbally only compounds the issue.  I spent months speaking to the agency which provides my 'continuing care', trying to ensure that I had my two favourite carers as much as possible. Things were fine except for weekends when I'm only allowed one of them and another carer accompanies that one -she's not at suited to caring and after 2 months still stands around and has to be told what to do. Bad enough. But this week one favourite was on holiday and 2 days running having, last week ,sent a rota with a carer I knew listed along with my favourite, they sent 2 different people, one one day and another the next!

(I am trying to avoid a hoist for as long as possible and since my ridiculous OT service refuses me a standing hoist I use  a walker to stand up and have shower chair and wheelchair wheeled up to and away from me. Complex and scary? Yep; so, do I sue the OT for putting me in this position due to their shere bloody mindedness?).

At least for those 2 days with 1 favourite carer things weren't too bad. However ....... now, both carers away till Monday and this morning  I had one of the new ones and 1 who'd been 2x abot 8 mths ago. It was pretty grim culminating in me being run over by the wheelchair and then, with the wheel caught on my ankle, me nearly dragged to the floor! I must admit that the wheelchair driver was trying to avoid my daft cat, Harry, who's socialising includes watching my daily ablutions! But the problem was that the carer couldn't control the chair. It was like giving a 16 year old a Ferrari!

Apart from a few very choice words, mostly beginning with 'eff' and a sore, bruised ankle, it was terrifying and exhausting. How I managed to get part of my bum on the seat of the wheelchair was a miracle. I was lucky that I could converse with the agency and tell them that I refuse to have 2 complete novices coming to do my care - Steve can't.

For me, it's 'roll-on' Tuesday when things will revert to 'status quo', until the next holiday, or one or both leave. It's ridiculous how my days are ruled by the stresses of which carer will come, how long do I fight for a standing hoist (2 years so far), how long do I wait for a comfortable cushion to sit on and a wheelchair to go with it so that I can successfully access the outside world ..........................and so on and .........

Saturday, 30 June 2012


The Olympics, football, Oh my god,
David Beckham’s not in the squad!
He’s been left out of the football team
That Stuart Pearce is really mean ...............
But, hold on a minute, let’s be sensible
Is that logic not defensible?
David’s old and past his prime
He’s done his bit, had his time
Aren’t we trying hard to win?
If we recruit the likes of him
We’re really riding for a fall
We really won’t stand a chance at all
Let’s forget the ‘Old boys’ network’
And recruit players with great footwork
Those who can perform for an hour and a half
But, hang on again, that’s a laugh..
Remember just last week at the Euros
We didn’t seem to have many of those
We were embarrassingly poor
Defensively bad, couldn’t score
Maybe we shouldn’t bother to enter some sports ..
Like football, tennis, basketball and all sorts...
Please don’t blame David Beckham’s exclusion
For us coming nowhere, it will be a delusion
We’re crap...............get over it!
(Or, as us Brits like to say ...'We're not quite up to it'!)

Sunday, 17 June 2012

My Trip to Wisley

I went to Wisley, the weather was windy
The sky was quite cloudy and grey
But I met up with inspirational people
We laughed lots and had a great day
There were people who’d lost their loved ones
And those living with the dreaded MND
But whatever their reason for coming along
They all had a big effect on me
Some days when I’m feeling depressed and quite sad
I must try to remember these words
To think about others who are ‘living’, like me
With a disease that seems so absurd
It robs your life of most everything
Except you can think, laugh and cry
Conversing for some, is almost impossible
But, now enabled with the blink of an eye
I must live out my life with an upbeat stance
Try to leave behind a positive legacy
Start everyday with a smile on my face
Just like those friends I made at Wisley

Friday, 15 June 2012

Ode to The Euros

A man who was watching The Euros
Said, ‘My, it’s so boring, think I’ll dose’
I said, ‘Don’t worry one jot
Cos you won’t miss a lot
I’ll let you know when the full time whistle goes’

Saturday, 9 June 2012

In my opinion ...

I’m an optimistic person, though it may be ‘tongue in cheek’
About our chances in ‘The Euros’ that have started just this week
We’ve a motley selection making up our team
The likes of some I’ve not heard of or even seen
I’m afraid I can’t pretend that I’m really excited
Or that I’d love to go and watch us play, not that I’m invited
I’d rather get my 'kicks' from watching teams like Poland play
With their ‘second string’ goalie diving down to save the day
I think I would prefer to watch my mate, ‘Phil The Power’, Taylor
Throwing darts in the UK Open, he’s an amazing player
Or the lovely Lewis Hamilton thrilling in his car
A great successful driver, we know that he’ll go far
Then there’s Jess, Thomas and Mark Cavendish, almost dead certs for gold
And Rebecca Addlington as well as others, so we’re told
We’re number one team in the world at the game of test cricket
As well as being one, two and three at golf, ‘yes’! that’s just the ticket
So I’m afraid that I won’t shed a tear if England fail to flourish
Because contrary to some opinions I think our football team is ..............overpaid and rubbish

Please don't get annoyed .........

MND’s a bastard, it bring us sufferers to our knees
Many cannot speak or eat, breathe unaided or sneeze
A common denominator is that mostly we can’t walk
When out, requiring wheelchairs, at which some of us will  balk
MNDers start out with an optimistic outlook
Bringing any odd dissenters, very quickly, to book
Unfortunately, MND takes no prisoners, is relentless
It marches on regardless, and sometimes I must confess
Where,I once was belligerent, ‘MND won’t beat me’, I said
As time goes on, MND plays severely with my head
There are days when I am fed up and depressed and feeling sad
I want people to support me, to stop me feeling bad
I don’t want to be chastised for not being ‘Optimistic’
When sceptical of breakthroughs; a cure won’t be that quick
So, for those of us, when down and bitter and resentful
Be empathetic and supportive, persuade us our cup’s half full
And not half empty as so many of us fear
When we see how many of us are dying every year
Yes, we can make the most of the time that we’re around
Try to raise funds or awareness as with talents we abound
We’ll have days when we’re upbeat and won’t let the b****r get us
But we’ll also have the days when we’re down and think, ’Why us’?
Please don’t be annoyed when someone’s sad and cannot cope
Just be patient, offer help and positive cajoling, yes, and................ hope

Wednesday, 23 May 2012

Granny !

I’m going to be a granny, I found out, for certain, today.
I’m going to be a granny, hip, hip, hip, hooray!
Even though I won’t be able to bounce it on my knee,
Or push it in the pram, or cuddle it close to me,
I can sing it lullabies, recite my poems and fairytales,
Whisper stories about its mother; oh, how I will regale
About the time she..............well, you know.......she did that....thing!
I hope that, though I can’t babysit, to its little life I can bring
Some kind of help, and advice and oh, such love, galore;
Though I wish, with all my heart, that I could offer so much more.
I’m grateful that I may well be around so that I can see
My new grandchild who will be adored by me, Granny P!