A wee night out...

Hi guys, we got out for a wee while last night! woo hoo!

The Espedair Street Band were playing at the Hac, a local venue, last night and Coo and I went along...it was great fun! lol
Celebrating 50 years of Scottish pop, the band played a whole range of songs from Lulu's shout, chirpy, chirpy, cheep, cheep, some Deacon Blue, with Real Gone Kid, to Frankie Miller's Darlin' and Bay City Rollers - Shan-a-lang! We had a blast! lol

The Harbour Arts Centre or Hac is lovely!
It's a friendly wee venue and has a restaurant, bar and a program of live music and comedy too - it's a real fun place!

It's yet again, that roller-coaster ride for us today.
Coo was real poorly overnight so we've been kinda re-grouping and living quietly today. I'm glad we got to go last night, we sure had fun !

If caring teaches us anything, it's to grab, with both hands, what little chances there are and make the most of what you have - you just never know what the next day will bring!
It really was a pleasant wee time out and I hope you manage a wee pleasant time out this week too!
(((hugs)))
Maz x

Our Anti-Bedroom Tax update...

Hi guys, we've had some movement on this issue!

I posted last time about our MP Katy Clark and our MSP Margaret Burgess, who were trying to help us with the under-occupancy or Bedroom Tax issues we were experiencing.

They both had asked our Local Authority, to reconsider our case and offer help with a  Housing Discretionary Payment.
We had a meeting with their Welfare Reform team, filled in some paperwork and... we've been successful!
The Local Authority, will assist us financially with the additional housing expenses, at least for the next year anyway and thank goodness! We are so relieved!
Coo was totally stressed out and struggling with this whole situation and I'm glad we can at least have some breathing space for now!

It's not over though - the fight continues!
We still have an appeal lodged!
We honestly feel the decision to remove our funding in the first place was flawed! Due to the disability and how complex things are for us coping, the additional space needed for our overnight PA and my ongoing respite periods too, we really don't have any unused or spare rooms in our home so I've decided to let this appeal continue.

Maybe government will realise how unfair these arbitrary decisions really are for people with disabilities and their Carers - we live in hope - and we really must all support one another along the way!

If you're caught up in the middle of this, remember to keep strong, contact everyone you can think of who is in a position to help and don't give up hope!
Better times must surely be coming!
(((hugs)))
Maz x

After Campaigning...respite!

Hi guys, after hitting the campaign trail in recent weeks, I decided a wee time-out was much needed!

Coo's been struggling with all the stress generated by the current 'Bedroom Tax' issues we currently have. I suspected we would be affected badly but hoped we could manage things and with minimum stress for Coo, sadly I've quickly found this easier said than done!

I managed to cushion Coo from as much of the impact and stress as possible and pushed ahead with letters and phone calls to both our M.P. Katy Clark and our M.S.P. Margaret Burgess and while this has been helpful, we're still going to be stuck with additional housing costs and a difficulty in meeting this new expense.
Luckily our M.S.P. Margaret, asked the Local Authority to contact us about a Housing Discretionary Payment. This means we may be able to get some additional funding to help and I hope we do as downsizing is not going to be an option for us due to all the adaptions we would need!
For now, in our case, I've done all I can so...now we wait!

The financial worries to one side, health-wise, Coo's drug levels are still problematic, in fact they're all over the place. His seizure levels are on the up again too, stress tends to have a knock on effect like that and things spiral out of control so I decided, having done all I can for now, on the 'Bedroom Tax' front, it was as good a time as any to book some respite for us both.

Thank Goodness for our SDS (Self Directed Support) Care package, it means at times of real struggle, we can quickly access funds and take a time-out and...that's just what we did last week!
We didn't go far, just a little ways up the coast and it was...

...Magical! - Just look at that view!

It's a real pretty place, we used to visit often when our children were small. We always enjoyed it and I'm glad we returned again!
This time, we had a few days on our own, wandering around, relaxing and generally just keeping things calm and restful. In the middle of the week, Looby & Steven brought baby Jessie for a few days so we had some quality, family time too and as Looby was along...I got some much needed sleep so...result! lol

 

We've come back home all rested and relaxed so everything else is just going to have to wait for a few days!

 

We're doing ok and I hope you're doing ok where you are too!

(((hugs)))

Maz x

Thoughts on 'Bedroom Tax'...

Hi guys, just why does this worry me so much, that I use precious respite time, (a rare comodity)  and campaign to stop the 'Bedroom Tax'?

Well, firstly, it's so very wrong!

 For the last few months the media in our country, aided and abetted by our own government have mounted a campaign of their own against the poorest and most vulnerable members of our communities.
All people on benefits, working or not, have been pushed into the one category and a 'them and us' mentality has been fostered and encouraged!

Our communities have been encouraged by both government and the media, to adopt a derisory and divisionary stance, you're either a scroungers or a striver and...that's the pleasanter side of Britain's Welfare Reform.

What about Carers then?
I for one, object to being labelled - we'll call it 'Economically Inactive' - I hate the scrounger label!
Carers are not unemployed, they're very much employed, providing care around the clock for severly disabled family members. We're not economically inactive either as we're saving the NHS, tax payer and State, Billions every year!

If we could downsize, we would! Our home has been adapted and we're not under-occupied, not in the real sense of the word! All rooms are being used by us and our over-night PA's.
They provide care for Coo and allow three precious nights undisturbed sleep for me every week, to enable me to keep caring the rest of the time!
This house supports the assessed needs for both Coo and I and it would cost thousands to adapt another property but more to the point, we need the space just to cope with the disability!

What choices do we have? - none!
We need to pay, we'll have to find the money - we must!
In our modern times - 'Heat or Eat' is so very much alive and that is the biggest shame of all!

I hope you're hanging on in there and managing to cope,
Stay strong!
(((hugs)))
Maz x

Campaign Update...

Hi guys, we got up to Glasgow to the Anti Bedroom Tax protest ok!

Looby came to keep Coo company and off I set with mum!
We made the trip with some members of my wee Carers Group and it was a good day!
There weren't many of us - everyone's not so lucky and I'm really glad to have, our SDS (Self Directed Support)  care package in place. I have access to respite and can use it to do things that are important for me...Things like today for one!

Thousands of people turned out at Glasgow Green, to stand up and let their feelings be known and...good for them!

I'm glad we managed to go! It was an important day!
Carers and disabled people seldom protest or march - I guess we just don't have the energy to take on the officials but this time it's different - we can't afford not to!
The 'Bedroom Tax' will have a massive negative impact on Carers and disabled people alike. Most are just not in a secure enough financial position to pay the additional rent bills and like Coo and I can't move to a smaller property as the house has been adapted to help cope with the disability!

Where it all will end nobody really knows but I do hope the authorities begin to listen as for Carers and people with disabilities, this is one of the most damaging pieces of legislation, government has ever introduced.

Sadly, I have a feeling the fight is just beginning, wish us some luck as we surely need it!
(((hugs)))
Maz x

On the up and campaigning again...

Hi guys, Gosh it's a bit of a see-saw the last few days!

Just like these wee frogs - it's been a bit of an up-and-down kinda week! lol

Thankful Coo seems to be back on the up! woo hoo
His cold is going now and his temperature is coming down too so that's a bit of a bonus! He's still sleepy and the seizure levels are still up but they're manageable and that's the main thing!

We'll get the bloods done again next week and see where we stand but at least things are improving for now!

In other news, I'm back on the campaign trail again!

It's been so very worrying recently, especially with all this media surrounding the 'Bedroom Tax' beginning here on April first. We've had word from our Local Authority and yes we are affected and will need to find an additional 24% housing costs each month! It's such a worry, as with just about all families touched by disabilities, things are very tight financially - God only knows where we will find the additional money but find it we must!

We just don't have the option to move house as our home has been adapted and set up with all the alarms etc. and also a wet-floor shower room for Coo. We really don't have any spare rooms as we need the current space we have just to manage each week!
So...
We're off to Glasgow to join all the other west coast Carer and disabled groups to march and protest this newest and most unfair law!

I sometimes wonder just how effective protest marches are but we have to at least try!
Wish us luck!
(((hugs)))
Maz x


Back with a bump...

Hi guys, I'm afraid, it's been a bit of a bumpy ride this week.

In fact, caring sure is a bit of a roller-coaster ride at times isn't it! Well, after the ups of last week and my big night out, we've hit the down-side again - Coo's blood levels are all over the place!

 

Our doctor called with the blood results and...that's never a good sign! Yet again the levels are too high. They're way out of the safe range so I guess that's why we have yet another seizure increase and Coo keeps continually falling asleep!

*The medical advice?

Well, we could reduce the meds and hope things settle a little but as Coo's now developed a sniffle that's not really a good idea, any infection will create even more drug level problems!

We've talked it out and decided to leave the meds as they are and sit it out for another few days, hopefully either the cold will come to a head and we'll cope with that or the drug levels will even out and Coo will start to improve all on his own - stranger things have happened!
 

It's such a careful balancing act with the meds now! I doubt, poly-drug therapy is ever easy! I do know, it's so very difficult for us though, especially, when we need to adjust the doses. Each little change risks a huge spiral out of control again but...

Positive thoughts - Let's hope it doesn't come to that this time!

 

Stay strong!

I hope you're having a more settled time where you are!

(((hugs)))
Maz x