Respite, SDS, Carer Roller-coasters, hard hats and keeping well...

Hi guys, it's been a bit of a roller-coaster week here!
You know the kind - up and down and kinda difficult to catch your breath kinda week!

On the up side...
Thanks to our SDS (Self Directed Support), Coo and I managed a respite night away at the theatre in Glasgow! woo hoo!
We went to... Dirty Rotten Scoundrels!

What a great show! It was booked ages ago and yet again, it was a bit touch-and-go if we'd make it as Coo's been real poorly but he rallied around on Monday and still wanted to go and...I'm so glad we did! He kept well pretty much, while we were away and we both so enjoyed it all so...result! lol
I guess a change is as good as a rest right enough! lol

Now for the down side...

The life of a Carer sure is a roller-coaster ride at times, a lovely night away, a giggle eating ice-cream in the theatre and then back to earth with a bump!
Coo's seizures have worsened, he's so very tired and tetchy shall we say! We're ok, I've dug out my hard hat and we'll get his bloods done, sit it out for a bit and just see what happens...again!

Keeping well...
I'm glad I completed that 'Mindfulness' training TACT - (The Ayrshire Community Trust) recently offered free - it's come in handy over the last few weeks.

I didn't think I needed this training as I'm usually kinda upbeat about things in general and cope pretty well but it's taught me to care a little more about me too and be a little kinder to myself and I guess that's a good thing to learn!

I bet a lot of Carers could really use 'Mindfulness' training too!

Stay strong friends and be 'mindful'
(((hugs)))
Maz x

Carers Week, Cycling, Spamalot and Sunshine...

Hi guys summer has at last arrived and...just in time for Carers Week too!

It's been a busy few weeks!

Respite...
Coo and I managed a wee overnight respite break up to Glasgow to the Kings. Coo's a great big Python fan so off we went to see... Spamalot!
It was great fun! Loads of laughs and even an impromptu theatre evacuation half way through! lol

After the fire brigade arrived and gave the all clear, we piled back in and...it was on with the show!
All-in-all we had a grand Glasgow adventure!

Next up...Carers Week!

Carers Week last year, saw me saying how enjoyable I found the nail painting session -is it really a whole year? It must be as Carers Week is yet again upon us!
This time around it's been a bit quieter, no laughter yoga or trips out this year but I did manage to get my nails done and a wee lunch at the local Carers Centre and our wee group managed to raise awareness of Carer issues at a local fete too so we've done ok!

Sunshine and cycling...

What a blast! The sun has decided to visit at last and...with Coo feeling on the up this week too, we got out on our bikes again! woo hoo! Such a great way to spend a lovely day whizzing about on the cycle tracks and what a great end to our week too!

I've loved it this week. Fresh air and sunshine and both well enough it enjoy it all! We've had a great week and we're doing good - I hope you're good where you are too!
(((hugs)))
Maz x

On the up, pain probs and bike rides too...

Hi guys, Hope you're well,
We've been taking it a wee bit easier this week and I guess it's been a mixture of the post holiday blues and my own pain levels this time around but on the plus side -  Coo's back on the up and...thank goodness for that! lol

My own health issues have continued. 
I'm ok but I've had some news on that front.

 It seems, all the issues at Christmas are stemming from a neck problem...who knew?
It looks like I have degenerative discs, nerve damage and neuropathic pain so pain meds and physio seem to be in order.
I'm not finding this new development at all easy - Turns out I'm a rubbish patient! I have all the patience in the world for Coo when he's poorly but markedly less so for myself, I just keep pushing myself a bit too far, I wonder if that's a Carer failing in general? Anyways, I started the pain meds a couple of weeks ago and this week, thankfully, they are working!

All in all, with Coo back on the up and my pain levels down (what a see-saw!), things have been pretty positive here this week!
The weather improved the other day too, the sun even came out and we managed a bike ride...woo hoo!
What a wheeze it was too! It's so good getting back out in the fresh air for a wee while, the feeling of freedom is really quite addictive - something that feels this much fun, shouldn't be good for you! lol

The first time out this season and we were both pretty much fine afterwards so...jobs a good 'un! lol

If you get the chance, give cycling a go, it sure is fun!

Remember to take care of you!
(((hugs)))
Maz x

Carers, Respite and Roller-coasters too...

Hi guys, and happy days - We've been away on Respite!

With Coo being so poorly, we didn't go far, just a little ways up the coast to Wemyss Bay...
It sure is a pretty place isn't it!

We always find it so relaxing and peaceful and the change of scene and pace too has done us both no end of good!
We nearly didn't even go! Coo wasn't doing at all well, he had an increase in seizures, was struggling and it was a bit touch and go but in the end we decided to 'just go for it' -I'm so glad we did!

The weather was glorious, the views spectacular and we really had such a great time!
Looby came mid-week with the grand-babies, I got some much needed sleep and as a bonus, we got to spend some quality time with our wee ones too so...jobs a goodun! lol

Quickly back to reality though...
Coo's blood results are not so good this time and we're back on that dreaded AED (Anti Epilepsy Drug), roller-coaster ride again!

You know the one, too much drugs in the bloodstream yet more seizures and too little? Pretty much the same effect!

We're having a think about it for a few days and then we must decide if we're going to stick, hope things settle or... begin adjusting the doses yet again!

I'm glad we got away for a bit and it's thanks to our SDS (Self Directed Support) care package, that we are able to take off for a few days when things are difficult. It's just so flexible and has made such a difference.
With SDS, I honestly feel the quality of life has greatly improved for us both.

I hope more Carers have a chance to try SDS and find a support system that works for them!
Stay strong,
(((hugs)))
Maz x

Carers, IJB, Tenders and Easter...

Hi guys, it's been a busy week yet again and...Happy Easter!

I've been out with my local authority again, with both the Carers Tender and the shiny new IJB (Integrated Joint Board) - after a lot of hard work...Health and Social Care are now merged!

IJB...It's been an interesting process and I'm so glad, here at least, Carers and Service users were in from the off!
Our input is vital, we've been there with services, both health and social care ones and we know first hand what works well and often where some changes could make things easier and that is valuable!
I've said it before and it's so true...in order for things to work well, we need to continue to work together!
The Carers Tender...
How did I find it?
Well, long, tiring but very interesting too. It was a lot of work and a lot of paper and a lot of potential too! I'm content with the decision we reached so...now to get on and make sure those services meet the needs of our North Ayrshire Carers!

While I've been busy working away on the practical stuff of the last few weeks and keeping my pledge, making sure Carers voices are heard, the caring still continues too!
Coo's still real poorly, his seizure increase is still evident and we're struggling on. I'm so grateful for the support we have. Our SDS (Self Directed Support) care package means even though things are difficult at home, I can still manage to get out to meetings and continue with my plans. Sure I'm always aware Coo is poorly at home but I know he's safe and things will be fine while I'm busy.


I guess it's always a bit of struggle for Carers.
Being pulled in every direction is always difficult but it just shows how important proper support really is and just how much of a difference it can make for Carers.


Keep strong and keep speaking out -
Lets make sure Carers voices continue to be heard!
(((hugs)))
Maz x

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