Update: Coo's foot & The Carers Advisory Group...

Hi guys, it's been a bit of  a mixed bag here this week, both busy and quiet at home time too!

Coo's foot...

Well, it's still broken - no surprises there!
I'm getting a bit concerned though as it's not much better! The problem is, he can't rest it up any as every time he has a seizure, his foot gets jerked around again and it's not getting a chance to heal!
I've decided to contact our GP for some advice and just see if anything can be done to help the healing process along, I'm not sure what if anything can be done but...I guess we will see!

Carers Advisory Group...
I've been out again with my Local Authority this week as part of their new Carers Advisory Group. I decided to be involved with this group as their new 'Carers Strategy' is a good document.
The Strategy has the potential to make things a whole lot better for Carers in our area and I really feel the best way to ensure the policy is delivered is for experienced Carers to be involved from the off and it was a successful meeting!

Questions raised by my own Carers group (The Three Towns Carers), were submitted prior to the meeting, made it onto the agenda and were discussed on the day. - result!

I honestly feel, only by working together, can we truly improve things for Carers and the people they care for and I'm pleased to report the Carers Advisory Group has made a good start!
It's good for Carers to work with and influence policy where they can, especially if by doing so they can help other Carers along the way!

Stay strong guys,
(((hugs)))
Maz x

We won...twice!

Hi guys, it's been a golden week this week!

CareNA...
Brilliant news - our community portal did win the COSLA (Convention of Scottish Local Authorities), Gold Award!

I'm so glad it won!
It's a brilliant resource for Carers and disabled people in our area and as it grows and populates it will only get bigger and better so...job's a good un!


In other news...

The North Ayrshire Provost Civic Awards...
Remember I blogged about my wee Carer group - The Three Towns Carers being up for the Provost Civic Pride Award? Well...we won! Just how cool is that! Sometimes Carers hard work and dedication to a loved one, is forgotten but this time we were remembered!

Here we are with the other winners...

Check out Liz and I on the bottom right, in our posh frocks and by sheer chance, we were colour co-ordinated too! lol

It was a wonderful evening,  a real happy experience and best of all the Carers won!
We're getting a cake for our next meeting so all our Carers can celebrate over a wee cuppa!

After the big night out and posh frock wearing, it was back to reality pretty quick - Coo was really poorly and the seizures were coming thick and fast.
The highs and lows of caring, it sure is a bit of a roller coaster ride! One minute posh frocks and out for dinner with the Provost and the next...jammies, seizures and struggles - we coped and we live to fight another day!

so...all-in-all, it was a bit of a bumpy weekend but...what a great week! Sure was fun!
Stay strong guys!
(((hugs)))
Maz x

Update: Coo's foot, Carers Scotland, CareNA & SDS Event...

Hi guys, what a week...again!
Coo's foot...
It's been a bit quieter here this week, Coo's foot is still broken - no surprises there! 
The problem is, he can't rest it properly, each time he has a seizure all the limb jerking just makes things worse and with 10-15 seizures a day that's a real tough break - pardon the pun! The hospital did say it'd take four to six weeks to heal so I guess it's just going to be a slow process and on the whole we're coping ok so things could be worse!

SDS...
Thanks to our SDS (Self Directed Support), even with Coo poorly, I still managed to get out to my meeting this week. It's kinda rare now, that I need to cancel things - what a change from the 'flying by the seat of my pants' lifestyle that used to be the norm!  I'm glad that's changed, it was always so very stressful trying to organise care just to get out and I sure don't miss that!
Carers Scotland...
Anyways, I made it up to Glasgow as planned and it was an interesting meeting too. The government are evaluating the Carer organisations they give funding to and that's fair enough but it was good they asked 'Carers' who are involved and benefit from these charities, what they do, how they've helped and just what they're really like!

Care and Support North Ayrshire...

Tonight's the night for the community portal & website that along with my local authority, I was involved in setting up!
Here's a wee link...CareNA
Will they win? I hope so!
It's a great resource for Carers and the wider community too so fingers crossed!

SDS Event...
I'm taking another few days quietly with Coo for now as next week I'm really busy! I've a wee meeting with Three Towns Carers and our Carer Champion Councillor Steel, on Monday and I'm out training and contributing to a two day event on SDS later in the week.

I think it's important to keep active, involved and to share good practice where I can.
All-in-all it should be an interesting week!
As my granny always said ' it's a good life if you don't weary' so...
Here's to not wearying!
(((hugs)))
Maz x

Struggles, SDS & Sleep...

Hi guys, what a couple of nights we've had!

Coo was so very poorly and it's been all a bit of a struggle - lot's of seizures coming thick and fast.
I think he was a bit stressed about the upcoming hospital visit with his broken foot and who can blame him for that! Thankfully things began to settle around four o'clock and we did, at last, get a wee sleep.

It never ceases to amaze me how quick Coo bounces back, while I'm still struggling a bit with the aftermath and tired feeling, Coo's absolutely fine, sipping a cuppa and really rather chilled! I don't know how he manages it but I'm so very glad that he does!

 

Thank goodness for our SDS-

(Self Directed Support) package, this funding allows me some very much needed sleep and...tonight's the night!
 

Looby will come stay, keep an eye on Coo and I will be blissfully asleep 'till morning! It's so much easier to manage knowing some proper sleep is just around the corner and that's maybe something most people take for granted. I guess it's such a simple, every day thing, that we tend to forget there are so many people, especially Carers who are struggling along with little or no proper rest!

SDS/Personalisation, may well be the answer they're looking for!

 

Well, I've got some sleep sorted out for tonight but a wee bit sunshine would be really nice too! I'm assured spring has sprung so who knows but I'm not counting on it! lol

 

Let's hope for some sun or even some sunshiney thoughts!

(((hugs)))

Maz x

Provost for tea? No chance - A & E...

Hi guys, well this time we made it all the way to February before the first A & E visit of 2014!

Instead of a nice pot of tea and some cake with Provost Joan last Thursday at the civic awards meet and greet party, I ended up with drinks-machine hot chocolate at the local General Hospital A & E Dept and it looked nothing like this one I can assure you! lol

After a not too long wait,
Some prodding about and an x-ray...it's official!
Coo has broken a bone in his foot! What a pain and in more ways than one!
So...just what happened?
Well, firstly Coo knocked it in a seizure, ouch!
It really seemed ok, a bit sore mind you but no worse than the usual lumps and bumps of life living with Epilepsy so...we carried on as usual!
We had arranged to spend some time with our wee grand-daughter Jessica, just out for an hour in town.

Anyways, on a whim, we decided to pop in for a cuppa and to let wee Jessie have some fun in the new soft play area for pre-5's.
so far so good...but not for long!

Coo decided to 'help' Jessie but unfortunately he didn't help himself any...he fell over in the soft play and the was that - he finished the job! Bone broken, crutches and a whole lot of hassles!

We're back up at the hospital on Tuesday and hopefully it won't be too long until he's fully mobile again but I think he'll be steering well clear of those soft play places in future! lol

Onwards and upwards as they say!
(((hugs)))
Maz x

Caring, Harping, Strategies & ATOS...

Hi guys, after all the rushing about last week, it's been so quiet here the last few days!

Coo's been poorly again so we've been mostly at home and after all the busy-ness of last week that's probably not a bad thing and it's given me time to catch my breath, regroup and chill for a bit! I did manage to get out to my wee Carer meeting on Monday though!
 Looby came to keep Coo company and I headed out for a wee chat and a cuppa with my 3 Towns Carers.
It's always good to spend time with other Carers no matter how tired you are!
It gives me a wee bit of a boost being with others who know how it really is, they don't judge but they do offer solutions and a bit of laugh along the way too!

While I've been home, I've taken some time out harping!
I tend to reach for my harp when I'm feeling a bit tired or even a bit over-whelmed and need a wee boost and it usually does the trick!
I  love music and I think it's therapeutic but who knows, all I can say is...it sure works for me!

Carers Advisory Group...

I'm busy with a new group later this week.
It's with my Local Authority, NHS and other partners and I agreed to be part of this one as their Carer Strategy is a good one and I really feel having experienced Carers involved from the off, is the best way to ensure everything offered in the new Strategy is actually delivered!

ATOS...

With Coo being poorly, sadly, I didn't make it up to Glasgow this week for the latest Demo. against ATOS Healthcare.
This company has cost us (and many other families with disabilities!) many a sleepless night! We stressed majorly over their fiasco surrounding Coo's on and off need to travel for assessment with them. One minute he was to go and another it was not necessary, they just couldn't make their mind up. In the end it got sorted but not without a lot of stress, worry and anxiety and those are words this company seems to generate on a national scale!

I've met news that ATOS want an early exit from their  DWP work capability assessments contract, with mixed emotions. 
Who knows, maybe another company will do better but let's be clear ATOS are not the only ones to blame for this fiasco - DWP's flawed policy is the real villain of the piece and I'm afraid that battle is very far from over!

We live to fight another day!
Stay strong my friends,
(((hugs)))
Maz x

COSLA first then GoMA fun...

Hi guys, it's been a busy few days!

I went to COSLA with the others to do a presentation and a question and answer session on CareNA . Thankfully it all went great so fingers crossed we win that Gold Award...and we should as the CareNA website is a brilliant resource for Carers and Service-users, I'm so pleased with how it all turned out!

Once all the work stuff was over, it was time for a wee respite break with Coo so....GoMA  (Gallery of Modern Art) Glasgow, here we come!

We decided not to rush, take our time getting up to the city. We'd chosen to go on Thursday, the GoMA is quieter then and it's late opening night too - no pressure and no need to rush!
We checked into a wee place in the city centre around lunchtime, grabbed a quick bit to eat and hit the Gallery - Wow! What a place!

It's really a kinda crazy-cool place and it's totally brilliant too - we loved it!

From the wonderful twinkly lights all around this building to the unusual and thought provoking exhibits it holds, this sure is one classy place to visit - we had  an awesome time!

Highlight for me...
There's a brilliant selection of  Niki de Saint-Phalle artworks.

Her Arts kinda funky and colourful and right up my street. I don't think Coo was as impressed but I loved them all!
Here I am enjoying them - maybe a little too much! lol


It was a lovely wee time-out for us both! I'm so very grateful for the SDS (Self Directed Support), funding that makes wee breaks like this one happen!
A few days away, a wee bit of culture and a wee time out, sure make everything that little bit easier.

We're back home and happy!
Don't stress about SDS when it comes your way, as it surely will! Think about the possibilities - it's brought lot's of new opportunities and support our way that's for sure!
Happy days!
(((hugs)))
Maz x