Tuesday, 13 September 2011

My Catheter

I’ve just got a catheter,  a supra pubic one
It saves me getting on the loo to sit on my bum
It’s a very weird feeling, not needing to wee
But it gives back some independence to me
Before the procedure I wouldn’t go out
Afraid to need the toilet of that there’s no doubt
I’d not drink a drop for hours on end
Dehydrating myself, it drove me round the bend
Now, I sit in my chair, don’t need the loo
I only use the toilet if I need a pooh!
But the bag, it must be emptied periodically
My husband must do it as he lives with me
I’ve decided upon a name for his task
He’s the ‘Royal Piss-taker’, I just have to ask
Him to rock up, wash his hands and empty away
It’s a job he must do several times in a day
I hope that he doesn’t get bored with his role
As it’ll need to be done till I’m nout but a soul!!!

Friday, 26 August 2011


Wow, I have just won the lottery;
But please don’t send begging letters to me.
I opened my e mails and there it said,
‘News about your ticket’; but it won’t go to my head
I’ve won five times this month, must be a record  
But I won’t get excited as the amount that I’ve scored
Isn’t quite as amazing as this all sounds
It’s a measly, paltry thirty five pounds!
Still, when all’s said and done, it’s better for me
Than a 'poke in the eye', wouldn’t you agree ?

Tuesday, 23 August 2011


I sit here each day, my mind wandering
Where do I go from here, pray?
Am I destined to fritter away what is left
Of my life, sitting here every day?

My legs, they hardly function
My arms, they are rubbish too
My neck gets so tired I find it hard to explain
The feelings of frustration to you

I daydream about what things might have been
It is silly, I know, and depressing
But, mainly, I ask myself why do I bother?
As carers do my washing and dressing

My retirement was to be idyllic
Three months of the year in the sun
The rest of the year I would fritter away
Enjoying each day one by one

Fate has dealt a blow that is bitter
MND is surely no fun
It robs one of life bit by little bit
Not to be wished on anyone

I try hard to remain somewhat positive
Think about what I can still do
Unfortunately, the list is not very long
But I still have a voice, that is true

I can carry on writing my poetry
Or whinge, as I do in my blog
I could write the odd article about MND
And how everyday is a slog

I can still shout about how bad life is
Being stuck in a flippin’ wheelchair
Doing nothing else but computing
When I’d much prefer to be elsewhere

But, there’s light at the end of the tunnel
A new culprit has reared up it’s head
Though I don’t know if the research will find
A real treatment before I am dead


‘Ubiquilin’, the strangest word
When one says it, it sounds absurd
But this word, whatever it may mean
Could be the answer to an MNDers dream

Saturday, 20 August 2011


Inside I am screaming, I am angry to the core
I am so frustrated, I’m sure you know the score
Other MNDers will know just how I feel
Everyday it’s just the same, I’ve been given a raw deal

Things I was so good at, like organizing rooms
I can no longer physically do, it fills my life with gloom
My brain is fully active, with no deterioration
But  that fact doesn’t fill me with elation

Asking other people to help me out with tasks
Should be fairly easy and not too much to ask
Why then do I feel that no-one seems to care?
That they’ll do the very minimum, sometimes I despair

I’m feeling very lonely and isolated, too
But when I go out I feel like an animal in the zoo
The other day my carer boldly asked of me
‘Is your disease catching ‘? How ignorant can one be?

Today I feel like ending what little life I have
I feel emotionally abused, certainly don’t feel love
What is left to give me cause to want to live?
Only my two daughters to whom, my love I give

This awful disease leaves me no desire to carry on
Only when I expire will  the battle be won
Today I see very little reason to persist
I feel that I am living each day just to exist

Even services set up to supposedly help our plight
Seem obsessed with bureaucracy, and I have to fight
These people seem to forget what traumas we all face
‘Sorry, panel says, ’Nah’, it’s a bloody disgrace

Fortunately I do not always feel like I do today
Sometimes I can cope, there’s not much more to say
I certainly don’t see a tunnel filled with light
But I suppose that I won’t give up without a fight

This disease can fill you with roller –coaster emotions
Knowing there are no pills or any secret potions
To help us save our neurons from obliteration
There’ll be no miracle cure in ours or other nations   ........

Let’s face it; for those of us with MND, life’s a bitch, and then you die!