TERRIBLE THURSDAY!

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 – (http://www.amazon.co.uk/dp/B006R11MHQ/?tag=hydra0b-21&hvadid=11070059885&ref=asc_df_B006R11MHQ)

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 

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’!!