Carers, Sleep,Seizures and Support...

Hi guys, it's been a difficult week.
I'm afraid we are both struggling!
    Poorly...
Coo's broken foot still remains problematic and to cap it all, he has an increase in seizures yet again. There's been little in the way of rest here, it's all been a bit difficult. I phoned our doctor and arranged for some blood tests so we can at least check what the drug levels are like. Maybe this will shed some light on things or maybe he'll develop a cold - who knows, it's one of those, sit it out and wait and see kind of things!

I'm digging out my hard-hat and flak jacket again!

I'm really feeling it this week, I'm tired, feeling a bit low and I seem to have developed some swollen glands - joy - I hate being ill! I always say I don't have the time and just carry on regardless  and truth be told...I'm a bit of a rubbish patient too! lol 
I think most Carers are probably the same, we're used to being on the other side of the caring equation and a bout of illness ourselves? well, is just not part of the plan and definitely not cricket! lol
   Remedy...
I'll keep up with the 'take plenty hot fluids' advice, leave things a few days and just see if the pesky glands go down by themselves and if not? I'll cross that bridge when I come to it!
   SDS...
One thing's for sure, I'm so glad for our SDS (Self Directed Support) care package.
It means I can have some much needed rest - tonight is a sleep night for me and I can't wait! God alone knows how I coped when I was poorly before! Everything was so much more difficult to cope with and I sure don't want to be in that position again! When things are at their most difficult and not going well, having proper support in place makes all the difference in the world.

It's the difference between having a sense of struggle and drowning, to coping and surviving!


Sleep is such a small, normal, everyday thing but the lack of it, can be so very devastating and Carers feel and know this more than most! I'm so grateful I now have some proper rest, I only wish more Carers had the same - God willing!

Keep strong friends
(((hugs)))
Maz x

Carers and the Commonwealth Games...

Hi guys, I've had some news. Good news...in fact...great news!

It's been a really busy and successful period recently for our local Carers!
First there was the launch of CareNA our local community portal, that went on to win the COSLA Gold Award!
Next, 'The Three Towns Carers' won the Provost Civic Award for a Community Group - wee recap here...

So just what has happened now?

Four members of our Group (The Three Towns Carers), have been selected as Queens Relay Baton-bearers for this years Commonwealth Games in Glasgow - We'll bear the Queen's Baton (for a wee while!) as it travels on it's journey throughout North Ayrshire!

Quote: The Glasgow 2014 Queen's Baton Relay will travel 190,000 km in 288 days and...four Carers from our wee group will be there doing their bit too!
Now, just how cool is that?
...we're tickled pink at the prospect!

There are lots of Carers out there, who still need help, support and friendship. We entered these events to raise the profile of 'Carers' in general and our wee group too and hopefully find some of those hidden Carers in our area.

I'm so excited about this latest development - can you tell? lol
I'll update as more news comes our way!
(((hugs)))
Maz x

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