The role of the carer.

What gets me sometimes is I never applied for this job. I don't ever remember saying ooh yes I'd love to do that. There was no choice. No one is coming along to say thank you either. There will be no annual appraisal with talk of pay rises and promotions.

If you ever see a carer..it may cross your mind that they cope well...perhaps better than you would...luckily they are such a strong person. I have to tell you they are not. It's all fake. Inside they hate it as much as you know you would. No one talks about it you see..how much they hate it.

Cos it's wrong to moan right?

I wish I could be a better carer. I wish I could give up my happiness for his. More self sacrificing, patient, loving, calm..but I'm not sure I'm up to the job. I wish I could keep my marriage vows. But really who would stand in church and say "I agree to stand by you despite you getting a disease that means I no longer recognise you. I will take on all the responsibility because you no longer can. I will watch you whilst you ignore our children because your too tired. I will accept it when you let me down again and again.....and that this will go in and on...with the promise that things will only get worse". Would kind of spoil the mood of the ceremony right?

Inside you see..I'm still a little girl. I want to be back in my parents house, in my bedroom..surrounded by my Wham and Duran Duran posters. Not a care in the world except whether I would get to snog George O'Leary (never did btw).

And at night? At night I dream of handsome princes to whisk me away and take me to a better place...

Money.

So, living with HD can kind of mess up your finances.  I wasn't really used to having money in the first place.  I grew up in a working class family.  A rough part of London.  Never went without..but certainly not rich.  My parents were intelligent people though.  Made sure I knew right from wrong and worked their butts off to give me an education.  My Dad always told me to get me an education, go to Uni.  It would open doors..give me choices in life (it was also mean I would get to stay up all night, sleep all day, try dubious substances and lose my virginity...he didn't mention that but thanks anyway Dad).  So, somewhere along the way I ended up becoming an inverted snob, despising wealthy people, joining the Socialist Workers party ...left of left. My Dad was proud.... my mother hung her head in shame.

Then I met Mr W.  He came from money you see.  Had a good job..own business.  Many women would have run to that but I hated it.  His friends mocked my left wing values.. I despised their ability to behave like hideous rich bastards who clearly didn't give a stuff about anything about having a good time. But somewhere along the line I guess I joined in. I was also earning a good salary.  The holidays were good.  The shopping.  The BMW on the drive (well you would wouldn't you?).  My father started mutterings of me being a Gucci Socialist.

So, then it all changed.  Mr W's business went down the pan.  Then he got sick.  So now we live on benefits and a 'blink and you'd miss it' pension.  So now I watch every penny. have to constantly make choices about where its spent.  Worry I won't be able to send my kids to Uni.  Stress when I have to say no to something they want.  For the first time in my life I take handouts from my family..having always been proud to stand on my own two feet (but Mum if your reading this..im not that proud..and there are a pair of boots in Next calling to me...)  Then there is the stress of claiming the money...stupid forms...having to learn which words to use, which boxes to tick. 

I don't miss the money though.  Only the freedom and choices it brings. So, where do we go from here?  I guess its all down hill... but somehow I know I will be ok.

Anyway, according to the Daily Mail we are living the life of riley right?  and I guess if it gets really bad I can always knock out a few more kids.

This one's for you...

So, I chickened out of blogging.  Its quite hard you see, to open up your soul to anyone who chooses to read it.  There's no point writing if it's not from the heart. I guess its ok if the blog is about cooking, shopping etc but this a blog about living with someone who has a progressive neurological illness, it ain't gonna be pretty.

I was fine with strangers reading it.  Fine with close friends reading it..they already know my life anyway but I found it hard with the in-betweeners.  You know the friends you havn't seen for years, the school run people, the sympathetic looks.  Couldn't be doing with sympathy..not my thing..although I know well meant. 

But a few of my friends kept nagging me.  ''We miss Mrs W" they said..keep blogging. So, I thought I would try again...

So I want to dedicate this one to them.  For every bit of crap in my life I seem to have something good.  So many lovely people in my life...and they just keep coming. I think I do have someone up there looking out for me after all.  

The special one's you know...the one's that accept Mr W, turn a blind eye as he knocks his food on the floor, show concern when he nearly falls over and even blame someone else when he falls off his chair! The one's that really look into my eyes when they ask me if im ok and don't just take my word for it.

Thank you my BFF's this one is for you!

(Gonna miss you Mrs Bangater!. *sobbs*)