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

Maz's posh night out...

Hi guys, guess where I've been?
I donned my posh little black dress and my shiney, red, heely shoes and...Cinders did go to the ball! lol
Looby came to keep Coo company while...

I went to the Local Authority's big posh celebration! After all our hard work with the Carers and Services-users reference group, my Carer friend Fiona and I, were invited by the Director of Social Services, to come along to their 'Glittering Awards Night' and it was fun too!

 

We had a lovely meal and a whale of a time and of course we...networked to the max! lol It was too good an opportunity to miss! I mean, all those people in the one room, who could make a real difference for Carers? It just couldn't be missed!

We had a good discussion with the councillor who's current remit is Social Services and she's very supportive of Carers too - a real bonus! and her lovely husband works for the Parliament too - result! We managed to raise some issues and hopefully he'll be able to help us too!

 

I did explain the major difference having proper support in place, has made for Coo and I and I think they realised what I meant too!

I'm glad we both got to go, as between us, (my Carer friend Fiona and I, that is!), we're a formidable force - I guess we just, so desperately want a better deal for all Carers and...what's wrong with that?

I hope we weren't too pushy but on balance, I think we might have been but I'm glad we tried!

 

To cap it all...it was a sleep night too!

So...after all the excitement and time-out, I got to sleep too - Brilliant!  

 

Oh well, the 'Gladrags' and heely shoes are back in the cupboard and it's back to Carer-land!

My granny used to say - it's a good life if you don't weary and she was right! It's avoiding the wearying that's the trick! lol

 

I hope you manage a wee time out too this week!

(((hugs)))

Maz x

 

Event feed back....

Hi guys, the Glasgow trip went well.

There's lots of good work going on out there and the Local Authorities are at least, trying to get it right this time! The Enable Scotland event did highlight some areas where we could be doing with some help though so...I'm going back to the Carers and Service Users groups I'm involved with, to share all the info!

Glasgow had an 'Emergency Planning' strategy in place which sounds promising and they've developed an Emergency Carers Card, something like this one...

It's a bit like a bank card to keep in your purse and it lists in case of emergency contact details - it's simple and effective!


Well...
We don't have anything like this in our area...yet so that's maybe something we could push for - I can feel a campaign coming on!

While we're at it...
Here's a copy of a really good emergency care plan currently being used in Salford.

***Emergency Care Planning***

 It's practical solutions like these Carers really need so...well done Salford!

I'll let you know how things go here, wish us luck and...happy campaigning!
(((hugs)))
Maz x

Picking up the pieces...

Hi guys, I'm off to Glasgow tomorrow!

Coo's been poorly again the last few days and I wasn't sure if I'd manage to go but things have rallied around again so Looby (our daughter and our P.A.) will come stay with him and my plans will go ahead so...
Glasgow here I come! lol

That's the great thing about SDS (Self Directed Support), plans don't need to be cancelled at the last minute when Coo is poorly. Obviously, if things were real bad and we had a crisis, I wouldn't want to leave him but if things are managable, I can trust Looby to cope.
She knows exactly how to deal with all the seizure activity and struggles and this means, my plans don't need to be cancelled and I can still have some time out to access things that are important for me...and that's important too!

So just what is tomorrows meeting about?

ENABLE Scotland will be holding a 'Picking up the Pieces' event on the 7th March at the Marriott Hotel to talk about the research undertaken in the Picking up the Pieces report and to discuss the future of emergency planning for family carers. If you are a carer or a professional interested in this topic then please contact the marketing team at marketing@enable.org.uk to find out more. 

 ENABLE'S 'Picking up the Pieces' report from late last year:
http://www.enable.org.uk/enabledirect/publications/Documents/FL%20-%20Picking%20Up%20The%20Pieces%20%28web%20version%29.pdf

I really think emergency planning is so very important for family Carers. I mean, just what do you do if there's a crisis and you can't provide care?

I'm lucky to have some support in place from Social Services but others are not so fortunate and it'll be interesting to see just what help is out there - If any, I guess we will see!

It should be interesting, and I'll blog and share the experience,
(((hugs)))
Maz x

A Theatre date no less...

Hi guys, what a blast from the past...

Coo and I went all the way to Glasgow for a wee theatre trip!
Now, just what show did we go see?

• Clue 1 - It's a bit of a quirky musical!
• Clue 2 -  There were lots of funky costumes worn by  the audience, from lab coats to feather boa's!
• Clue 3 -  It all happened...over at the Frankenstein place!

We saw...
 *****The Rocky Horror Show - woo hoo!

It's the 40th anniversary tour and the show was totally brilliant fun - Coo and I had a blast! lol

We sang along with the songs and everybody 'Time-warped' too - now, just how cool is that! lol It's a long time since we were at the theatre and it really was a fun time-out for us both.

The SDS (Self Directed Support), has really opened some doors for us and I'm glad we had the opportunity to go. Things like a simple day-trip, are not so easy when you have care needs, equipment, meds, seizures and all the other things that come with a disability thrown in the melting pot!

It used to be so very difficult juggling the care needs and travel. It was always really stressful going anywhere, now, with supports in place, it's just so much easier to manage. We can plan our visit and enjoy things without worrying too much about how we'll mange it all as we can stay over, recover and rest up for the journey home next day - much easier all around!

Things that were so out of reach for us, are now achievable and that makes a real difference!
This last year with SDS has really helped us both. We've had some fun! I feel a lot less stressed and Coo's certainly less isolated than he was and that can only be a good thing!

We sure had some fun 'Time-warping' again and we both had a wee giggle too!
I hope you have a wee giggle too this week!
(((hugs)))
Maz x