Saturday, 2 February 2013


Terrible day - Thursday. Hospital visit to Kings armed with an overnight oximeter. First, reprimanded by bossy chest consultant for being late for an appointment I didn't know I had, then given the bombshell that my CO2 had gone from 5% to 8% and I was at risk of imminent ventilatory failure! Talk about lack of bedside manner. No compassion at all.  To say I was terrified is an understatement.

She said I had to be admitted there and then to be trained on the NIV machine. If I didn’t comply I had only weeks, maybe months left. No punches pulled.
 I was too scared even to cry! I told her that I didn’t want to stay in but agreed to try the machine. (It’s ridiculous that the one in the clinic which is used to demonstrate NIV is very antiquated and disconcerting).

In the chest unit I was greeted by a lovely physio and a respiratory technician. They talked me through the machine (modern and easy to use) and the different masks; I immediately opted for the nasal mask which didn’t appear to be as claustrophobic as the others. I tried it on and, with what any ‘normal’ person may consider as being patronising manner (but don’t forget, I’m s**t scared of the whole experience) they went through the machine and measurements, staring low. Starting it up and monitoring my response and reactions. It was relaxed and caring; I forgot my fear and, despite the initial ‘weirdness’ of air being ‘forced’ up my nose and having to breathe only through my nose, I sat back and let it happen. Surprisingly, it was okay. Just keep remembering that this is your temporary lifeline and you’ll cope.

Within half an hour my CO2 had gone down to 6%, a vast improvement. Exceptionally good but bossy doctor came back and said I could go home. So, here  I am, 2 days later; SATS up to 99% O2 which is much better than the 91/2% which it was on Thursday.

(thanks Steve for information re oximeter. I bought one and it’s invaluable – (

The ventilator seems to be working and I have to admit that I felt less anxious this morning, THOUGH I DO REALISE THAT THIS IS THE SLIPPERY SLOPE AND ................IT IS TERRIFYING!

Now that I am at this point in my disease process I can only hope that the NIV can temporarily ‘hold’ things. I have a wedding to attend (my younger daughter, Alex), and a grandson to cherish. So, sorry ‘grim reaper’, but I’m busy at the moment!

My beautiful daughter, Alex and her adorable nephew (my grandson), Flynn 

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’!!