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 

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 %@*^!!!

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’!

           J

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!

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

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’!!

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 .........