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!!!

MY LOTTERY WIN!

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 ?

IS THE CURE ON ITS WAY?

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

COULD THERE BE A GLIMMER OF HOPE?

‘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

SCREAMING.....

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!