Wednesday, 9 October 2013

Voices Unheard...A Life Sentence.

These ear drops smell like flowers - nasty ones. The type that make up your Nan's perfume. Another infection. I seem to be getting a lot lately.

On top of that, I have to have lots to drink this morning, so I can wee in a pot! My kidneys are hurting now, on top of everything else.

The doctors know that they are small (as all my organs are) because I was a ‘prem’ baby.  They need testing to make sure they are functioning as they should be, so I have to wee in a pot.

Have you tried weeing in a pot that size?!

Not even a man with the very best aim, (which, granted, most of them don't have in a month of Sundays anyway), would be able to direct pee into a pot that size!

Please, it's ridiculous!

Yes, too much information, I know, but this is the reality of living with illness and disability and it’s a reality that too many people don't think about.

Luckily I don't have to do things like this as often lately, (although my kidneys have hurt on and off for a while now).

If I had to go into work afterwards, I dread to think what time I'd get there!

With the Endometriosis pain the way it is too, plus my hip cramping up, I don't really want to move very far today and I probably couldn’t, even if I wanted to.

It's all very well to say 'disabled and ill people can work', but what sort of employer is going to want ME?!
'I'm sorry, I can't come in today, I can't get out of bed,' 'I've been up all night with pain,' 'My anxiety stopped me sleeping' 'I've got my head over a bucket in case I throw up,' etcetera, etcetera!

Reality check! It's not as easy as the government and media make it seem...is it?! I hate them for it.
This is MY LIFE we are talking about! It is many people's lives!
Perhaps their short sighted, quick fix, unrealistic 'solution', isn't the answer! Perhaps compassion and understanding is!

We are all different. It is not a case of ‘one size fits all’ with illness and disability, even though the government (and the media) seem to think it is.
The fact is, no matter how much the government want us to work, (and no matter how much we want to), for a large amount of us (and for many varied reasons), it is simply not possible.

Two hours later...

Yay!  Victory (over the wee pot) is mine!
But, you know what, before I go back to bed, I just want to say one thing, and it’s important (to me at least), that I say it.

I'm not one to say that those people who have had disabilities or illnesses for life are worse off than those who 'gain' them, or vice versa, (I would never say that, because it’s not a situation anyone would choose, and it’s hard either way), but I will say this.

Just because I've had my Cerebral Palsy for life, it doesn't mean it is any easier for me. I've had a lifetime of having to think my way around problems, a whole lifetime of pain, stress, and more hospital appointments, fights for my rights, surgery, cancelled plans, limitations, and heartbreak than anyone can shake a stick at!
I know that I've got more of all of those things to come for the rest of my days. There is no break for me. There never has been.
I think sometimes, the 'newbies' (or whichever term you choose to use) might think we have it easier because we are 'used to it.'

Therefore, (it seems to me, anyway) we often feel ignored, and our opinions and experiences don't matter like theirs do.

You know what? We do matter, and we shouldn't be sidelined! Please Ask us TOO! Maybe we can learn from each other.

Just because us (what I like to call ‘lifers’ – again you can use many other terms) never had something, doesn't mean we want it, need it, grieve it any less!
The ‘newbies’ had a chance to live a healthy life, have kids, have jobs etcetera, - we have not.

They’ve had it ripped away from them, and that must be hell, but I've never jumped in the air, kicked up leaves, carried a cup of tea across a room, or held my child in my arms.
I've never had those chances, and I never will.

My point is, there seems to be an idea, (in some campaign circles at least) that us 'lifers' don't need support because we 'have it covered'. To me, it feels like our experiences aren't worth asking about, because we couldn't possibly understand what they have lost, but we do! 

As I said, we have lost it all too. Please listen to us, ask us what we want and need. 

Everyone has something to contribute, no matter which route we got here!
We can (and should be able) to help each other!

We can do this. I know we can, but we need to work together. No one should feel excluded or pushed aside. We all have a right to be heard.

No comments:

Post a Comment