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Friday, 3 January 2014

2013, the good, the bad and the down right ugly...

Hi guys, 2013 had some good, bad and downright ugly points!

I want to end this post on a good note so we'll start with the bad and ugly side of 2013!
Like most Carers it's been a difficult year. For Carers, it's truly, never very easy but in 2013 there's been added pressure too that's for sure.
Our government's been less than supportive at times, their 'War on Welfare' and general uncaring attitude towards truly struggling disabled people and their Carers, has caused untold distress and suffering for people, like us, already paddling hard to just keep afloat!
Sad thing is, the up to date stats show there's very little financial gain for our government's stance but they're still intent on their path of social destruction and they've successfully used our media and their 'shirkers and strivers' rhetoric, to turn communities against one another - and that's truly ugly!

Coo and I have struggled through. It's been a difficult year, but also one full of trials and triumphs.
The trials?
Well, as always, there were many difficult times with real health worries throughout 2013.
*Health - living with serious long term conditions is always stressful and difficult!
*Family - Baby Jessie's very late, hip-dysplasia diagnosis was an additional worry, the on-going surgery problems she'd face too.

As if that that wasn't enough, we felt under siege by our own government.

The saga of Bedroom Tax and ATOS  all added to the stress and strain that was our 2013.

The triumphs?
*Health - I'm sure we triumphed - we're still here aren't we! also coming out the other side with wee Jessie -  3 successful surgeries and at last getting rid of the heavy Spica casts.
*ATOS - Seeing off the ATOS threat, wasn't easy, it was very stressful. Coo struggled most, the seizure activity kicked hard, we were stuck in at home on that scary roller-coaster ride again. I guess we just held on for dear life and hoped, they would see sense and the nightmare would end...and it did...for now anyway!
*Bedroom Tax - We so stressed with this issue!
We could not move - our house is adapted - we need the rooms we have, either for staff who come in to help or for respite sleep periods, to help me keep going but yet again, due to the stress of it all, we were plunged into chaos as Coo's seizure activity went off the planet and we again struggled!
We asked everyone we could think of, who had an influence to help.
Our MP raised our plight with the Prime Minister himself.
In the end, we secured a Discretionary Housing Payment but the saga that is 'Bedroom Tax' will raise it's ugly head again in March-April time.
*SDS - We used our SDS (Self Directed Support) care package and funding so successfully! In times of difficulty and struggle, when Coo was well enough to, we disappeared for a few days respite, turned off all the stresses, took a time-out and recharged our batteries for the next onslaught! I'm not sure how we'd have fared without this much needed help and support!
*Speaking out for Carers - I was happy to speak out, share my Carer story and try to encourage other Carers to seek help - we can only help and encourage people to see us can't we?

My granny used to say it's a good life if you don't weary and...she's right!
Hello 2014 and here's to not wearying!
Maz x

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