Halloween...

Hi guys, Happy Halloween!

I remember my kids singing this wee Halloween song when they were little...

Halloween is coming!

  Halloween is coming,

     Skeletons will be after you!

   Witches hats and big back cats...

 Ghosts and goblins too-oo-oo!

Just where does the time go I wonder?
We're having a quiet time as Coo's still poorly,
I hope you're having a lovely time where you are though!

Happy halloween holidays!

(((hugs)))

Maz x 

Pat's Petition...

Hi guys, more on Pat's Petition...

Over the last year, my Carer friend Pat has been working hard, speaking out for Carers and disabled people!

It's a worrying time!
Welfare reform is upon us and our government had cut hard and deeply. It seems Carers and people with disabilities have been dis-proportionately targeted in these benefit cuts and thankfully people like Pat have chosen to speak out....

Pat Onions has submitted an e-petition to the government website.
Pat is blind and Pat is also a carer. When we asked her why she submitted this petition she said -

We were determined to attend the Hardest Hit rally in Edinburgh. Determined, in spite of disability, to stand with the others who had made the long and difficult journey. Determined to show we were united as one voice against the vicious cuts we are all enduring. We knew there were many thousands who couldn’t make it. Disability, ill health, providing care, or cost would prevent them coming.   - We made it!

More on Pat's Petition:

http://carerwatch.com/reform/?p=83

If you've not already signed the petition, there's still time!

(((hugs)))
Maz x

Coughs 'n' sneezes 2...

Hi guys, those coughs 'n' sneezes are still kicking around here!

We're still in need of the wee cosy blanket!
Coo's getting mightily annoyed about things now. He's had this cough from mid September so we've been doubling up on the inhalers, steadily using pain relief, sipping the hot drinks, keeping warm and keeping an eye on Coo's temperature too but things are not improving much!

We know he has infection.
Last weeks blood results showed raised white cells and his AED (anti-epilepsy drug) levels were down so it's been fun this last few weeks and it's not letting up.

I guess you could say...
I'm digging out my hard hat and flak jacket as yet again we're on the dreaded AED - see-saw! You know the one...too much drug in the blood mean more seizures and just to complicate things...too little drug and, you've guessed it - even more seizures!

To increase the meds or not - well that's the million dollar question isn't it!

On one hand, there is an increase in seizure activity this week and Coo's very sleepy but then again the infection is still kicking around Coo's system just now and that could be lowering the drug levels. The problem is, if we increase the meds, as the infection clears, the drug level rises and things become toxic..not good!

I think, on balance, we'll stick it out for another week, until the next blood test are done and just hope things settle a little!

Wish us luck!
Let's hope for some winter sunshine, wouldn't that be nice!
(((hugs)))
Maz x

Carers Parliament...

Hi Guys! A wee update on the Carers Parliament...

I think October 1st was a good day for Carers. Over 180 Carers went to the Scottish Parliament and shared the Carers story. They spoke of the issues they had just managing to live and continue to cope day to day in most cases.

Carers at Parliament 1st October 2012

Here's the link to the debate: http://www.scottish.parliament.uk/newsandmediacentre/55354.aspx

It's published on  he Scottish Parliament website and I'm at around 40 -50 minutes in (debating chamber part 1).
I was in the morning debate, I explained that I'd been at both ends of the spectrum, being totally unsupported and struggling on alone for over twenty years, then through the long journey to where we are now with our Direct Payment and SDS to a feeling of value and support being in place.

I hope my message was clear, we need legislation!
It's not fair and should never be based on how supportive your Local Authority is or even your postcode! All Carers need effective support and access to respite on a regular basis and it should be their right!
I hate the way Carers usually have to fight for everything and at a time when they're feeling under pressure and really low it's just not acceptable they are left floundering around searching for help!

I saw some Carers I met a little over three years ago, when we held the last 'Carers Poverty Protest' in Edinburgh. Worryingly, where things had improved for me and Coo with our Direct Payments and SDS set-up, things had not improved at all for them and they were still struggling on alone even now three years on!

The lasting impression I came away with from the first Carers Parliament is...

• While things are improving for some Carers, myself included, there remains so much more to be done!
• The vast majority of Carers attending on the day did not have adequate support in place or any access to regular respite, or even any respite at all!
• Infact some Carers admitted, if the Scottish Parliament had not paid for replacement care for the day, they would not have been able to attend and speak out at all!
• Respite is still out of the majority of Carers reach!

We really still have a ways to go don't we  and we must keep the pressure on that's for sure!
(((hugs)))
Maz x

Respite and together too...

Hi Guys, we've been on a respite break together!

How great is that!
What a change the Direct Payment and new SDS (self directed support) care package has made.
This is the first time ever, we've been given the option to use some of our respite funding to take some time away together and it was brilliant fun!

Coo has not been abroad in almost fifteen years. Due to all the seizure activity, it was always just too expensive to insure him to travel so effectively, we've just had to stay at home...not this time though, the times they are a changing! lol

Picking a destination?

Well, somewhere definately in Europe as it's short flights! and it must be warm and sunny, with a nice pool and not too far from the beach would be good too!

We decided on Salou in Spain...

...and it was a good choice!

Lovely beaches, good hotel and glorious sunshine - what a bonus and what a great time we had!

Coo didn't have any more seizures than usual and so long as I was careful to keep him awake as much as possible during the day the levels were manageable. When we went out, I made sure we were back at the hotel each afternoon so Coo could sleep and I caught some sun with a wee cuppa sitting on the balcony - peaceful bliss each day!

I know it's not everyone's idea of a holiday, a bag full of meds, no alcohol, sleep periods through the daytime and early to bed but it was just what Coo and I needed most! A complete change of scene and some carefree time out!
We've both come back feeling a lot more relaxed and less stressed and so greatful for the SDS funding that enabled us both to recharge our batteries!

Back to the grind though! Flu jabs and the usual bloods were awaiting our return!

Don't be afraid of SDS if it comes your way!
It is now showing a significant improvement in quality of life for both of us so...if it's offered, reach out, grab it with both hands and make it work for you!

(((hugs)))
A sunny, smooth and very relaxed Maz x