Carer Struggles, health and hassles...

Hi guys, it's been one heck of a week!
It's still a hard hat and flak jacket time here!
I've not posted much recently as my wrist problems from recent months have escalated!
The Carpal Tunnel Syndrome diagnosis still stands but one top of that, last week my GP diagnosed De Quervains Syndrome too so I had a cortisone injection to try and help relieve things a little.

This week my long awaited appointment with the surgeon finally arrived - (I was refered in June!) - so just how did it go? Well, ok in some respects but not so in others. While the Carpal Tunnel issue is present, he will wait for further nerve conduction tests done in Glasgow before he proceeds - fine but he's thrown another diagnosis into the mix - In his opinion, my wrist is too swollen to be Carpal tunnel and De Quervains alone and looks more like Rheumatoid Arthritis. He took some blood tests and has now referred me to a Rheumatologist so yet again...we wait!
Meanwhile the caring continues!
Coo's stressed and poorly, I'm now stressed and poorly and we're caught in bit of a vicious circle! I had hope for some sight of an end or even a way forward with this and I'd kinda pinned my hopes on my visit with the surgeon yesterday. I guess, sometimes, things really just don't go to plan!
This raises the question...
Just what does happen when the Carer is ill? 

I'm finding that very little priority - if any- is given to Carers, even though they are needed to provide ongoing care for another person and usually with little support!
It's just not good enough and we really need to work on this!
I will be ok , if things deteriorate I will use the contingency funding within our SDS (Self Directed Support) Care Package, to pay for more support but other Carers are not so fortunate and if I'm kinda struggling, just how do they manage?

Stay strong friends as will I!
((hugs))
Maz x

Hard hats, flak jackets ADOC & that Carer Roller coaster...

Hi guys another difficult few days!

Caring sure is a roller coaster ride at times that's for sure!
We were out walking in the fresh air one day and the next? Struggle and strife! Coo's taken a bit of a tumble again so it's been a real struggle here.
We're back in Antibio-land!

Firstly a major cough hit and his temperature shot up, then the dreaded seizure increase kicked in. Why does it always deteriorate at the weekend, when there's no chance of seeing your own Doctor?

Any how, we sat it out and tried coping at home for kicking 48 hours intending to see our own Doctor on Monday but things were getting scary and the vomiting seizures were back - I hate them, after a bout of aspiration pneumonia, they really scare me the most - it's the noise, the choking, infact it's just everything about them really!
We no longer had a choice, we couldn't wait till Monday, it was time to get help! ADOC (Ayrshire Doctors On Call) our local out of hours services were great. They saw Coo quickly, the Doctor handled things kindly, checked him out and sorted some antibiotics - the seizure increase in almost always caused by infection!
This let us trundle on till Monday and our own beloved GP - yet more pills and potions but at last some improvement! Yeah..crisis averted and no hospital admissions this time so...result!

Things are still a bit up and down and Coo's a bit banged about with all the seizures but we are coping and we're ok - hope you're doing ok too!
(((hugs)))
Maz x

Events Review, Carena, #HSCP Engagement, Aids & Adapts...

Hi guys what a time of it we've had!
Ok, where to start! It's been busy that's for sure!

First up...
The Carena event at the Magnum Centre Irvine...
Coo was well enough to go and I thought he'd like it so...off we went! The plan was to be there around 10 o'clock but after a bad night seizure-wise it was nearer noon but we got there in the end!

So just how was it?
Busy! - over 130 stalls, from community and support groups to services and providers and all working in our own local area, who knew that many were out there all offering services and all basically just wanting to help!
This type of exhibition event is really valuable, especially for Carers as often people just don't know what is out there. Sometimes it's support from a wee local group that offers a few precious hours respite that is really all that's needed and is just enough to make caring easier and keep things going that little bit longer!

Next...
The HSCP - (Health & Social Care Partnership) Engagement Event at the Hallmark Hotel Irvine...

Firstly we were late! Coordinating half a dozen Carers from the three towns area over to Irvine was not as easy or as timely as it could have been! lol That said it was great! The members of the Three Towns Carers group who managed to get there (eventually) ranged in ages from early thirties to our Gwen at eighty-four years young! We've all been caring long term so you could say, there was a wealth of experiences to share and...share we did!

Between us we hit most of the work shops, if not all of them and we were pretty vocal on what we wanted from the partnership and just how we felt things should be!
Incidentally Carers have always wanted more joined up services where people and departments 'talk' to one another. Many is the time we have felt like that wee pinball bouncing around each and every way trying to find some help. It was never easy that's for sure! This new partnership way of working has the potential to be different, I guess we shall see!
Our Carers were well impressed with Jim and Annie's 'Fairer Scotland' workshop.
I guess, for most, with the best will in the world, finding yourself in a caring role full-time is not particularly fair! It kinda struck a chord and they really opened up about what is so unfair at the moment and their thoughts on how it could be so much better for Carers - once they started they didn't want to stop and that was just great!

Lastly...
Review of Aids and Adaptations services...
This was totally different!
An appreciative enquiry...Mmmm well, what can I say?
It was different that's for sure!
I'm more of a warts and all kinda person and like to hear a really balanced view both good practice and uplifting case studies but also I've found there's real value and balance in hearing where things have gone not so well and with Carers and services users around the table it could have been a great listening and learning experience for all, now that been said, it was still a worthwhile event!

People did share their experience and sometimes it is good to hear about where things are working well and services are delivering and helping people.
It's so important Carers and Service Users continue to be involved in every aspect of our services from planning and procurement to finance, provision and especially review! In most cases, we know what is working and how with a little bit of a tweak it could be made better too!

Health and Social Care affects and is for everyone - sometimes you just don't know that yet! An accident or illness is all it takes and then you need to find out pretty quickly just how good your local services are so if you get a chance to influence those who really can change things...grab it! I truly believe it's only by working together we can change things for the better for everyone!

Keep strong my friends as will I,
(((hugs)))
Maz x

Health & Social Care event October 19th, have your say...

Hi guys, with all the latest hustle and bustle, we're re-grouping at home for a few days!
Not being one for totally shutting down during quiet times, I'm always on the look out for interesting events locally and I've found one! It's a workshop looking at how people can input, plan and improve local services.
Our Council is pretty good on the consultation front!
They've proved it with all their SDS (Self Directed Support) work and all the welcomed input from Carers while writing the Carers Strategy so when they say they're looking for local people to come along and honestly give their views on improving services, I'm happy to be involved and extend an invitation too!

Here are the details...

Six members of my Carer group, the Three Towns Carers - (plus me!) - are going along to this event on October 19th in Irvine so if you're in our neck of the woods in North Ayrshire, why not speak up and share your experience? I know I will!

Hope to see you there so...get booking! 
(01294) 443044
(((hugs)))
Maz x

Scotland's 4th Carers Parliament, Carena Event...

Hi guys, what a week and it's not over yet!

Carers Parliament...
Carers from all over Scotland made their way to Edinburgh for the 4th Carers Parliament. Two Carers from each of the 73 Scottish Parliamentary constituencies attend to make sure as many Carer voices are heard as possible and this year, members of the Welsh Assembly attended too. They want to set-up their own Carers Parliament in Wales so yet again here in Scotland, with our forward thinking and ethos of working together, we have influenced and hopefully helped Carers elsewhere too - I do hope so!
What a great day it was!
Our First Minister was there

Not only to thank Carers for their contribution in our society but to inform on policy and update on the new Carers Bill currently before Parliament. It's good Carers have such a high profile forum, it's taken a long time but now Carers are involved in shaping policy and really helping change things for the better and long may it continue!

Carena...
Remember the community website I was involved with?
Well, it's going from strength to strength! Today they had a great exhibition and showcase event over 150 stalls, people, groups and organisations, offering a range of information and supports available all over North Ayrshire and it was busy, busy, busy! I wasn't working at a stall today as Coo wanted to go along and check things out for himself so we mingled, picked up some freebies and learned a thing or two!

Carena is not only a website, it's all over facebook and just about anywhere people need some information on services and community supports, offering info on anything from community events to job opportunities and more! It really is a great community resource especially for Carers or anyone who uses social services here in North Ayrshire so...go Carena!

It's been busy time but fun too and I've learned something new too - you know what they say...every day's a school day! lol
Hope you're doing ok where you are.
(((hugs)))
Maz x 

Carpal tunnel, Caring, Pledges and time out...

Hi guys, it's been a difficult month but we're still alive and kicking!

Carpal Tunnel take 2...
I'm now three months in with the Carpal Tunnel flare up and there's no sign of it letting up anytime soon. Good news is I've now been to hospital and bad news? I need referred to Glasgow...I guess things are moving - not sure in which direction yet...but they should be moving! lol

Caring, struggles and SDS...

Meanwhile caring with Coo is more difficult at the moment, moving and handling and the general wear and tear coping with such a high level of seizure activity all the time is so wearing and so painful. Thank goodness for our SDS (Self Directed Support), we used some of our budget to buy an adjustable bed to help cope with these latest struggles and I'm so glad we did, lord alone knows how we'd have coped this last few months without it!

Hard hat time again... 

Coo is still struggling on.
His blood results are fine this month, on the high side but fine. We were struggling to work out just why he has yet another increase in seizures, mood swings and struggles, then lo-and-behold he now has a temperature and raging cold - mystery solved!
It's now a case of battening down the hatches, getting that hard hat out again and holing up at home for a while!

Keeping my pledge...
Last year at Tommy's wonderful Carers Concert in Glasgow. I made a pledge to wherever possible, make sure Carers voices are heard...and I do wherever and whenever I can so even with the current care issues (and health ones!) I still manage to make it out to IJB (Integrated Joint Board Health and Social Care), the Carers Advisory and my Three Towns Carers group. The SDS package we have in place, makes it possible for me to contribute and continue with things I find important and rewarding and I think that kinda keeps me going to!

Carers time out... 

I used to feel trapped when these enforced times at home came around but with the support in place, I still manage to get out and about. This morning I managed to meet the other Carers at the Rowantree for a wee breakfast meeting and a look around the garden centre. Seems a little thing but infact it's huge not having to cancel things as Coo's poorly - changed days and happier times too and on that note I'll end!

We're ok, hope you're doing ok where you are too!
(((hugs)))
Maz x

IJB, Carer woes and Island views...

Hi guys - what a week we've had!

Firstly the tough stuff...
Carpal tunnel sure is a pain!
It's still kicking me three week on, even with the physio's help and a range of supports and splints! I'm hopeful it will go soon but meantime I've found a...girlie pink splint and I'm just kinda riding it out!

IJB...
I've been busy too! It was Health and Social Care IJB (Integrated Joint Board) time again this week. It's where members from throughout local Council, NHS and third sector, come together to discuss and agree our next step forward.
Here in North Ayrshire, Carers and service users take their place on the board too and rightly so!

It's important we are all on the same page as decisions made at IJB affect peoples lives so it's only proper they are represented on the board!

Carer woes...
It's been real tough these last few weeks. Coo's been bouncing around a bit and I'm sure we're back on that AED (Anti Epilepsy Drug) see-saw once again. Problem is, he's had a bit of a sniffle and a viral infection going on so there was no point testing his bloods as all those issues just skew the results! They are definitely getting done this week - he's so sleepy, there's an increase in seizures and the dreaded mood swings have returned, sure sign the serum levels are a bit high. One things for sure...somethings gotta give soon!
 
On a sunnier note...
I guess we're blessed where we live! When it rains it sure pours but when the weather is fine? Well, see for yourself! With a view like this who couldn't be happy?

I love living on the coast! The island view always calms and cheers me in equal measure and on that happy note I'll sign off!
(((hugs)))
Maz x

Carers to Top it all - health issues and hassles...

Hi guys what a week it turned out to be for us!

Health issues galore here!
Me first...
It seems on top of the neck problems, neuropathic pain, wear and tear and degenerative disc of recent months, I've now developed Carpal Tunnel Syndrome.

I've had wrist pain on and off for ages and I did speak to our GP about it around two years ago too. He advised me to use a wrist support, rest it and if it didn't go away, come back and see him - it went away and so did I! lol Next time it hung around for a few days again too but this time, despite resting it and using an ugly splint support, it's been over a week and no joy so...I think I'll go see our GP now and deal with it!
Coo's up next...
Ok it's not as if Coo needs another illness, well to be fair, who does!
In recent years, Coo's always been prone to coughs and chest infections after a nasty bout with Aspiration Pneumonia during an increased and prolonged seizure activity period. Anyways, he's had a persistent cough for months now so after yet more tests his latest xrays show he has COPD - (chronic obstructive pulmonary disease).
I know he's been more 'gurgley and phlegmy' during seizures but I thought it was maybe yet another chest infection brewing - seems this is all par for the course with COPD and in our case seizures thrown in the mix!
We're just kinda regrouping a little and getting our heads around things. It'll be ok!
In happier news...
Wee Jessie's latest surgery for Hip Dyspalsia went well - she's up and around and doing grand!
and her wee sister's hip scan went well - surgeon will keep an eye but...no more harness or Spicas for Islay! woo hoo! Thank goodness for that!
and to finish on a sunny note...

The sun came out this week, both Coo and I felt good on Wednesday too so we got out for a wee cycle! Yeah!
A good day and both hale and hearty? What a blessing!



We're doing ok and I hope you are too!
(((hugs)))
Maz x

Happy Saint Swithin's Day...

Hi Guys, I hope today has been a Happy Saint Swithin's Day for you!

Isn't Swithin's window pretty! 

I've always liked it.
All apples and raindrops! lol
 Saint Swithin's old traditional proverb...

St. Swithin's day if thou dost rain, for forty days it will remain. St. Swithin's day if thou be fair, for forty days 'twill rain nae mair.


Well, this year, I guess we're in with a chance it's been glorious sunshine here all day and that's  unusual in these parts!
Maybe things are looking up!
I sure hope so!
(((hugs)))
Maz x

Wee 3T Carers Respite day...

Hi guys I've been off out on a Respite day with my wee group!

Three Towns Carers...
Around six years ago our Carer group began. We are now a wee family of eighteen, who share and support one another through out the troubles and triumphs caring brings.

We offer support, friendship and extend a wee helping hand to Carers in our area and that can make all the difference in the world! I'm so very glad I found them!
We operate on a financial shoe-string using 'Tea money' and a little assistance from our local authority for which we are so very grateful! This wee bit funding makes it possible for us to access a much needed time-out and a little fun spent with other Carers too!
Respite...
Yesterday was one-such day!
Fifteen of us set off (in the council mini-bus!) for a wee day out to Dean Castle and Country Park in Kilmarnock and what a day we had! From Castles and gardens, Llama's and Donkey's to pigs - both pot bellied and guinea ones!- we saw the lot and had a fantastic day in the process!
It rained too but it didn't dampen our spirits!

 I like to live life by this principle...
 It's not about waiting for the rain to stop, it's about dancing in the puddles! 

Here I am doing exactly that!

It's thanks to our SDS (Self Directed Support) that I can access days like this at all. There were times in the past it was all just to difficult and stressful and in the end it was easier to say 'I can't come' and just stay home but not anymore! SDS has opened so many doors for both Coo and I, we can arrange time-out to do something together or like yesterday, I can sort care and get out and have some time to myself too - what a luxury! 

I know this isn't the case for all Carers, too many still struggle on alone year-on-year as I did and I'm so grateful for the support and changes SDS has brought us, I sincerely hope other Carers find the support they need too.

So inspiring I wanted to share...

This is from the circular memorial stone in Dean Park Kilmarnock and I thought it so apt for our Carers too - especially as we were on our grand day out!

Stay strong my friends as will I!
(((hugs)))
Maz x

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

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

Busy week Carers, Welfare Reform, Anniversary and PPF...

Hi guys yet again it's been a busy week!

Coo's just Coo - seizures and sleepy but still strumming happily along - he's been back on his guitar this week so things are surely on the up!
I've been out and about again!
PPF -  (NHS Patient Participation Forum)
On Tuesday I met a new group, our local PPF - well, it's not really a new group, I've been involved with them online for years but this week I met up with them face to face!
It was interesting and informative and as always, the real value is in sharing information and experiences. I really felt it was worthwhile being involved  - it's important people have a voice and raise issues and challenge where necessary.
Welfare Reform -
The latest Welfare Reform session for the Scottish Government conducted with researchers from Napier University went well. Sometimes it can be difficult sharing information, it's not always easy to open the box and examine things fully.

Health difficulties, disabilities and the current changes and challenges in our welfare system have brought their own brand of stresses for many disabled people and Carers and Coo and I are no exception!
It's really why I agreed to be involved with this three year project in the first place! It's important! I truly feel the research collected, will properly document just what did happened to the most vulnerable people in our society during one of the most turbulent and divisive periods in recent times and...I for one, want a proper record, taken from ordinary people and in their own words, accurately recorded!
We must all stand together and speak out strongly, whenever and wherever we can!
Happy news this week too...

It was our wedding anniversary this week. Thirty-one years - just where does the time go? lol
The weather was fine and bright so we decided to hop on a ferry to Arran...
It's a wonderful place for a visit and at any time of year! From museums, hill walking, cheese tasting and whisky distilling it's got the lot!
Just like Wallace and Gromit...we had a grand day out!
We sure had fun this week, I hope you have a wee bit fun too!
(((hugs)))
Maz x

Welfare Reform sessions Scottish Government...

Hi guys, it's that time again...
I think it's important to stand together and speak out when we can and with that in mind, I've agreed to keep involved with the Scottish Governments tracking of Welfare Reform.
I've now been involved with this for around two years and the next session is almost upon us.

A wee memory refresher...
Quote...

The aim of the study is to explore the impact of welfare changes over time on a range of households in Scotland. The project is being carried out by the Employment Research Institute, Edinburgh Napier University and the University of Stirling on behalf of the Scottish Government. 

 

I think it's important for people to speak out, share their experiences both good and bad and as both Carer and person with disabilities, Coo and I, have had to struggle through and find a way to navigate the recent sorry system of changes!
Firstly, the initial issues and stresses of the move over from Incapacity Benefit to ESA (Employment Support Allowance). Next, the seizures, stress and the hassles of coping with the ATOS people then last and by no means least, our struggle with 'Bedroom Tax' and securing a HDP (Housing Discretionary Payment). Both our MSP Margaret Burgess and MP Katy Clark helped us through what was a difficult time. Katy raised our case in the commons and we did get a reply from David Cameron PM.

I am dismayed the UK Government and media still continue to use their shameful rhetoric in relation to Welfare Reform. The 'Scroungers and Strivers' labels have stuck and only succeed in fuelling anti-disability feelings, further alienating disabled people and a continuing divide in our already fractured communities.

ATOS has gone but the stress and worry remain. We dread the continual stream of 'brown envelopes' from DWP that wing their way through our mail-box but I still honestly feel, most of the stress and issues created by this Welfare Reform process could have been avoided, if the policy had been planned and executed fairly in the first place!

It seems so incredibly unfair that most of the 'cuts' continue to fall disproportionately on families with disabilities and their Carers and it's important the true hardship people find themselves in, through no fault of their own is shown!
It's so very important to speak out if you get the chance!

I'll let you know how it all goes, stay strong as will I!
(((Hugs)))
Maz x

January Burns Day, Birthdays and Carer Business...

Hi guys, what happened to January? I turned around and it's just about gone!

Ok, what's been happening?
Well, Firstly...Happy Burns Day!

January 25th is a special day for us, not only is it Burns Day, it's Jessica's day too so...
Happy 3rd Birthday Jessie!
Not only did we have birthday cake and the usual treats but in honour of Rabbie sharing Jessie's special day (or the other way around!), we had haggis, tatties and neeps too -what a great wee family day!

Health...
Things are still a bit of a struggle here, Coo's just being Coo - loads of colds and sniffles about and loads of seizures too but on the whole he's fine and me? I had that wee health scare at Christmas, thankfully not a stroke after all (MRI was clear!) but I'm no further forward regarding what really happened and with around 18 weeks waiting time to see a Neurologist, I have a feeling this will run and run. Good thing is, the symptoms are no worse and we're coping so it's all fine!

Now to business...

It's good Carers are now involved through most practices and processes with our Local Authority. In fact it's a welcome change as it's not so long ago Carers were more or less told what services were available and had to try to make them work but...not anymore! From Carers Strategies, Advisory groups and support planning, we're involved and in the case of the SIB...we have a seat on the board! Changed days and that can only be a good thing!
Stay strong friends and keep fighting, we'll get there!
(((hugs)))
Maz x

Hopes and Hello's to 2015...

Hi guys and....

I wonder what 2015 will hold for Carers, just what would your wish list be?

I have two things on my list this year -

 

*I'd like legislation to help Carers get the support they need!

 

Carers don't really ask for much, they'd just like to once in a while, be able to access things most people take for granted ever day - time to sleep, a wee while to themselves away from caring or maybe even some Respite, dare I say a proper break! and why shouldn't they have a little piece of life to themselves?

Carers and SDS...

It's apparent the dreaded post-code lottery still exists as some areas have embraced SDS (Self Directed Support) more than others and their Carers have benefited from the changes. Other area are still dragging their heels or are making only a half-hearted attempt at SDS and that's a shame as I've found being more in control of care, respite and generally having more of a say in planning and deciding just what care and support will work best for us, to been so very empowering!

 

The other thing on my wish list?

 

Please stop the current almighty 'media-fest' on the poor and vulnerable in our society!

It's all so unfair!

Nobody chooses to be ill, nobody decides one day to be disabled and nobody sure as heck says 'When I grow up, I'd like to be an unpaid Carer'. Well do they? No!!

Being a Carer and coping every day with issues most people would find challenging at best, is hard enough, without our media whipping up a hornets nest around benefits and those who claim them! All that 'strivers and scroungers' media rhetoric has really hurt us this year and it's all so unnecessary!

Carers are benefits claimants but we are not unemployed, we're far from it! Carers Allowance is the lowest benefit and a Carer must be caring 35+ hours every week to claim it!

Please think before you attach a label to another person, things are seldom as they seem!

We must stand together - I'm hoping for a more tolerant society and I think we'll only achieve it by truly sharing the facts and dispelling those nasty, hurtful media myths!

 

Stay strong my friends,

(((hugs)))

Maz x