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!

MY DISEASE....

I have a disease, it’s an annoying thing

It doesn’t hurt, or ache or sting

It just makes me weak, my mobility’s crap

So I sit in my wheelchair, cat often on my lap

I'm lucky, can still speak, I’ll give you that

I can talk on the phone, have a chat

But that’s about all I can do

I even struggle going to the loo

This disease catches you unawares

Before too long you can’t climb the stairs

I can use my computer, still, that’s a bonus

But, getting dressed is an added onus

My carers,now,dry and dress me

I can, read Kindle books, watch TV

Eating’s very hard and exceedingly messy

I get covered in food, clothes can’t be dressy

My neck is weak, head inclined to flop

Headrest and collar support so my head won’t drop

But, being the loud, gobby lass, that I am

I make myself heard, don’t give a damn

Tell the authorities what I think

Make a noise, create a stink

Who else will help us to be heard

Getting help? Don’t you be so absurd!

MNDers, we’re the forgotten few

We all die off, disappear from view

It’s easier to ignore our plight

But we won’t give up without a fight

If you see this , remember in the main

It’s our bodies that die, not our brain

Don’t speak to the carer if one has no voice

They can hear but not respond, they have no choice

I’m doing my best to speak for those others

Who can’t speak for themselves as no-one else bothers

If you can help in any way

Contact the MNDA

We haven’t got a cure as yet

But there’ll be one someday, on that you can bet

It will be too late for most of us

But let’s not be selfish, make a fuss

Even if you could just try to understand

What MND does to woman and man

That would be a brilliant beginning

To appreciate a disease that has no ending...

Just death!