SIB, Blustery days, woolly hats & Carer Flu-Jabs...

Hi guys, winter has arrived here!

Just how do I know?
Well... I've been chasing panels from my greenhouse all around the garden and I feel a bit like Piglet in Winnie the pooh and the blustery day and I've a feeling this is just the start!

Last week, some of my wee Carer group (Three Towns Carers), were missing in action. I think this time of year brings added stress and struggle for Carers, everything seems just that bit more difficult in the grey days of winter and I honestly think, grey days make for greyer moods and with coughs and sneezes all around, it's so hard to avoid the dreaded sniffles!

While a cold is a pain in the neck for most people this time of year. For most Carers it means, addition struggles coping in an already leaky boat and a dread they'll be ill themselves!

Speaking of which...NHS, Carers and Flu Jabs!

All being well, we're off for our flu-jabs this Saturday. Remember Carers get free flu-jabs too - see you're Doctor now! Don't just get a flu-jab for the person you look after but...get one for you too!
Trust me, the flu jab isn't really as big as this one! lol You won't feel a thing - well, not really!


Am I slowing down for winter? Heck no!
 I've a SIB (Shadow Integration Board for Health and Social Care) meeting on Thursday in Irvine and the Carers Scotland Summit in Stirling on Friday - I like to keep busy and I'm so grateful for the SDS (Self Directed Support) that makes it possible for me to stay actively involved with things that are so important to me!

Well, it's definitely 'woolly hat and wellie wearing weather'! so...keep strong,keep cosy and splash in a puddle too - it's good for you!
(((hugs)))
Maz x

Carers Parliament, challenges and positives...

Hi guys, I've been busy this week, speaking out for Carers - I do try!lol On Tuesday, with other Carers, I made the trek from the coast up to Edinburgh for the third Carers Parliament!

Just who was there from our government?
Carers Scotland delivered the day and Alex Neil - Cabinet Secretary for Health & Wellbeing and Michael Matheson - Public Health Minister, were the speakers. They both spoke well and shared lots of information relevant to Carers but the most powerful part of the day was where Carers shared their own stories, their issues and the struggles they had experienced trying to seek out proper care and support! No-one got angry, it was dignified and controlled but the pain and struggle was all so tangible in the room - we'd all been there at some point or were still struggling on now!

We need to speak out and just tell it how it is!
I used a Respite day to go and I'm lucky, our SDS (Self Directed Support) care package, gives me the support I need to have a time out, some Respite and be able to continue doing things that are important to and for me but I know it's very different for lots of other Carers.
Fifteen minutes networking when we arrived at the parliament, showed that SDS is working well in some areas like mine and...how shall we put it? Far less impressively in other areas around Scotland! I challenged the minister on why it's been interpreted so differently by the local authorities, there's no consistency and he agreed!

He assured the Carers present, our government is on the case, they are closely monitoring and reviewing all the local authorities in Scotland and just how they are (or are not!) implementing SDS and I hope they do sort this out!

When SDS works, and I mean really works, it can be so wonderful!
Really opening doors for Carers, doors that have previously been shut tight! - Respite, time out, equipment, help at home, even just time to think, draw breath and regroup for the next onslaught. It really can be the difference between, coping and continuing and giving up.
Caring on alone is a scary place. Having to make decisions for someone else, all the time, when you don't really know what the best course of actions are, is really scary too and a helping hand, a bit of support and a little kindness along the way makes all the difference in the world!

I'm glad I got to go to the Carers Parliament and speak out - it's important for Carers to come together like this, to talk, share experiences both good and bad and to challenge our government when necessary!
It's only by working together will we ever have a chance to change things!

Keep strong!
(((hugs)))
Maz x

SIB, Advisory group, Carers meet and new babies too...

Hi guys, what a week - I've been busy again!

First up...
I was out with my Local Authority and NHS Health Trust - I'm the Carers rep on the shadow integration board (SIB) and try to make sure Carers voices are heard just about as often as I can!

Next up...

I went along to the latest Carers Advisory Group last Thursday. It's a good meeting, Carers from our area, meet with the Carer champion councillor Steel and other council representatives and Carer services providers to discuss, issues and concerns. It's only by working together we can successfully change things and get a better deal for Carers.

 

Fun times...

On Friday, some of our Three Towns Carers went over to Irvine for a master-class in, of all things, hanging baskets! lol Now I grow loads of veggies and fruits but I'd never arranged a hanging basket before and guess what? It was fun!
Eight of us had a ball, planting up the baskets and tea drinking! What a pleasant way to spend a wet Friday morning!

I kept the best news for last...

Our new wee grand-baby arrived this week so...
meet baby Islay Eve with her big sister Jessica!
We're just truly tickled pink with the both of them!

 All in all it's sure been a busy week and it's been a happy one too!

Next up, it's the Carers Parliament on October 8th!

I hope you've had a good week too where you are and if you're at the Parliament...shout out for Carers!
(((hugs)))
Maz x

A wee Swim a smile and a time-out...

Hi guys, I'm feeling more like my sunny self today!

Coo had a more settled night with six seizures and was up and around early too so...

we decided to take our grand-daughter Jessie swimming!
Well, I went swimming with Jessie and Coo had a wee cuppa and watched us splash about!
It was fun, a wee change and a pleasant wee hour out for Coo too and it has lifted my spirits back up again so....result!

All's well in our world for now!
Hope you're having a wee time-out where you are too!
(((hugs)))
Maz

Carers Roller coaster, Indyref, Carers Parliament...

Hi guys, what a roller-coaster few weeks!

I'm feeling wrung out and kinda like an old dish mop! lol

but where to start?
Ok, hard hat time...
Things have been difficult for Coo and I, his AED (Anti Epilepsy drugs), are too high in his blood stream so we've been tweaking the doses, battening down the hatches and just hoping things will settle a little! Multiple daily seizures are never easy but we're both hanging on in there!

#Indyref...
I've been wrapped up in Scotland's Independence referendum!
For me, it wasn't a huge desire to leave the UK.

More of a burning desire to do things differently, find a better way and in the process, hopefully improve peoples lives in general.
I've always voted - it's important to me and I previously always voted Labour too but in more recent years, I've felt a pull towards something different.
ATOS, austerity cuts and the continuing struggle for Carers and disabled people just to get by, have left me so sad and down-heartened at times, more of the same was unthinkable! I guess in the end, it was the announced further austerity cuts from Westminster that made my mind up.
I wanted something else, the chance to hope for a new start and hope for a better way too so I voted yes!

There's no other way to put it...We lost!

There were a lot of us (45% in fact), who wanted to try but, in the end, it was not to be. I can't believe how deeply I felt when the results came in, kinda flat and sad and I suppose so very unlike optimistic me!

I hope the promised powers do come to the Scottish Parliament or I and many others both 'Yes and No' voters will feel extremely cheated - I guess we will see!

In all this current political turmoil, the Carers Parliament on October 8th should be interesting!

One thing's for sure, I'm hoping for more settled times!
Keep strong friends,
(((hugs)))
Maz x

Respite, SDS and shop till you drop!

Hi guys I've had a wee time out this week!

I've been off on Respite for a few days and at my usual place...Blackpool!

I like Blackpool, it's fun and cheerful and if the weather is kind too, it's a brilliant holiday spot!
The Queen's is a lovely hotel. It's right on the prom too and the beds are comfy, the food is great and the Jacuzzi is toasty warm! lol
so...mum and I shopped till we dropped, had all number of cake eating and tea drinking sessions and generally had a...ball! Speaking of which, did you know Blackpool has the biggest glitter ball in the world? Well, they do and here it is... ta-da!

You sure need you're shades on when the sunshine catches a hold of it! lol
It's so cool though!
When we were there, the little ones were running around, chasing the reflected light - in fact everyone was having a ball! lol

Thanks to our SDS (Self Directed Support), while I was away, things at home, managed along just fine without me. Looby came to stay with Coo and keep him safe and this meant, I had a real break, with time to switch off and just go with the flow for a bit! I think that's what Carers miss the most, the spontaneity of life, being able to just get up and go and not need to plan all the contingencies and deal with the 'what if's' that come alongside disabilities and caring in general!

That's why I feel so strongly about the need for regular Respite breaks for all Carers!
It's oh so very important!

Unless you've lived this lifestyle you can only imagine the release of pressure that comes from proper Respite!
It's the difference between drowning in darkness and finding a safe harbour for a wee while!
I'm so very fortunate to have support and having been there myself, I know it's so very different for lots of other Carers still struggling on alone and it's just not good enough!

I hope the time comes where we all have the support we need!
Keep strong my friends,
(((hugs)))
Maz x

Appointments and time outs...

Hi guys, it's been another busy week, what with appointments, paperwork and just getting organised!

Ok appointment 1...

Coo's bloods are still problematic and he has an increase in seizures too so he's having more bloods done again this week. He just can't seem to catch a break at the moment. We're going to wait for the blood results and then... we'll regroup and decide just what to do. - we're coping and that's the main thing!

Appointment 2...Good news!

Remember my post about my Shonky eyeball from last year? - here's a reminder!  Well, I've been visiting hospital for the last year and now the results are in! No treatment required - woo hoo!  Turns out I have a tilted optic disc, it's been checked and it's nothing to worry about so...result!

I've one more appointment to go...and it's a good one! lol
I'm off tomorrow for a wee time-out and with other Carers too!
We're going on a visit to  'The Ayr Flower Show'

I've never been there before and it looks great and best of all? I'll be able to have a laugh and a fun time out with other Carers at a wee change of pace!
Thank you SDS (Self Directed Support) - Regardless of how things are, tomorrow, Looby will come keep Coo company and I'll get to poke around the flower show and most probably indulge in some plant buying! lol

I'm hoping for some sunshine and if not, well, there's always the wellie boots! lol

I'm faring ok here and I hope you're doing ok too!
(((hugs)))
Maz x