Tenders, troubles & fun times too...

Hi guys, it's been a bit of a bumpy ride this week!

Poorly times...
Coo is still struggling
His cough went but his seizure increase has stayed put this time and he's back up to 15 seizures a night, totally shattered, moody and so sleepy during the daytime - never a good combo where sleep seizures are concerned!

Anyhow, we were starting to worry just what else was going on, when he developed of all things a toothache! Coo's dentist is lovely, he knows Coo's situation and how quickly things escalate for him so a quick phone call and a visit later, it turns out it's a dental problem this time! Poor Coo's now had the starts of a root-treatment, Ed (his Dentist) says, it looks like the tooth nerve's been dead for some time and caused some infection so...mystery solved this latest seizure increase is most probably down to a.... root cause - pardon the pun!
There's no point getting the bloods done - infection always affects the level of meds in his blood so we'll need to wait a few days, let things settle and start all over again!

Busy times...
It never rains but it pours - I agreed to be part of my local authority's Tender process. It's the tender for services for Carers & Young Carers in our area and it's important.

I truly feel we can only make things better by working together so Strategies, planning, commissioning or  tenders, Carers need to be involved at all levels and I just had to take up this opportunity!
I'm glad I agreed to be involved as it has been a really interesting process but my-oh-my, what a week! With Coo poorly, the increase in seizures and struggles surrounding it all and #SIB meetings too, this could not have been a more difficult time! On the plus side our (Self Directed Support) care package, allowed extra respite hours to let me complete this vital piece of work and it did create a bit of a diversion so...it all worked out fine in the end!

Fun times...
I'm dusting of my little black dress and digging out the heely shoes tomorrow as I've been invited out to the Provost Civic Pride Awards. I'm taking another Carer with me  and with my Carer friend Fiona along too, we'll have fun out in our posh frocks and networking to the max!

I'll let you know how it all goes!
(((hugs)))
Maz x

Struggles strivers and #SIB...

Hi guys, it's been an interesting week!

This week I've successfully avoided watching yet more T.V. programs surrounding 'Benefits' I've just about had enough of these so called reality shows!
I've decided to inject a positive slant instead so I'm banishing the negative labels of 'Skivers and Strivers'  and instead, I'm focusing on 'Strugglers and Strivers' - far nearer the mark especially where Carers are concerned.

Firstly this weeks struggles...
Where to start?

Ok, Coo's had an increased in seizures yet again and we were struggling. Then the usual, will we-won't we, increase the meds or sit tight for a bit and see how things go, began. In the end we decided to wait and see. Forty-eight hours later....he has a sniffle and a cough so crisis averted, at least we know the cause of the increase so it's...batten down the hatches, grab the hard hat and struggle on through!
Meantime...
The work is piling up. Between #SIB and a full on Tender process to negotiate, it would just need to be this week wouldn't it? Hey-ho it's always the way!
Onto the 'Strivers' part...
#SIB (Shadow Integration Board - Health & Social Care)
Here in North Ayrshire our board is really moving now. The agencies Local Authority, NHS, Third and Independent Sectors are all now on the same page and more importantly Carers and Services users are on that page too and not just as a foot-note either! We're right up there as equal partners! Gone are the days where services were 'developed and provided for Carers' - now we input and help write strategies and develop those vital services too and that can only be a good thing!

With heavy care responsibilities this week and the additional work-load too, I'm beginning too wind down and feel the need for sleep now! Thankfully it's a sleep night! Woo hoo! - our SDS (Self Directed Support) Care package, ensures I have regular sleep nights each week and I'm eternally grateful for that support - Lord knows how I lasted before - it sure wasn't easy!
It's not just the sleep really, that is so important but it's also the way it all enables me to keep going in other ways too. Without such support, I would not be able to fully contribute and I'd most probably still be isolated at home.
I know this level of support is not the same everywhere and there's still much to do in supporting Carers but thankfully, I feel we're on the right track at last!

Keep well, stay strong and....speak out where you can!
(((hugs)))
Maz x

Advisory Group, Carer Newspaper & 3T Carers ...

Hi guys, it's been a mixed bag kinda week...again!

Coo's been poorly again and we've mostly been home, although I did manage out to my meeting on Wednesday!
The Carers Advisory Group...

This is the group where Carers, local authority, NHS and third sector get around the table, discuss issues and look for solutions and a way forward - important stuff!

It's good Carers are now regarded as equal partners - well around here anyways!
Gone are the days where services were developed and delivered in a 'take it or leave it' approach, only Carers know what will truly work for them and it's never a one-size-fits-all kinda deal!
In recent years it's sure improved around here and lets hope it's improving elsewhere too!
The Carers Newspaper...

I've decide to highlight and post a link to the...
        Carer Newspaper.
Sometimes Wendy and the Chill 4 us Carers team include items from here and even if I'm not included - it's always a good read so...
Thank you Wendy!

Last but not least...The Three Towns Carers!

Even though things are not doing brilliantly here health-wise at the minute with Coo, thanks to our SDS (Self Directed Support) care package, I will still get out tomorrow and spend some time with other Carers. It's so important to have a wee time out, it may just seem like a cup of tea and a chat but it's so much more! In fact, it's vital for Carers to spend time together, share information, experience and advice and most important of all...have a laugh and for a wee while, turn off all the stress of caring. I'd be lost without them!
If you haven't already, dig up a local Carer group and give them a go, you may be pleasantly surprised at the warm welcome!
Stay strong
(((hugs)))
Maz x