Carers & Surviving Christmas...

Hi Guys, well have we all survived ok? I hope so! lol

Christmas is such a challenging time for most Carers isn't it? Well I usually find it that way anyways! lol
It's really nice to be around family, if your lucky enough to be able to get out and join in but sometimes that creates it's own challenges too.
Between the changes in routine and beds 'n' meds times add in the ...

Rich foods and the obligatory chocolate munching that usually accompanies Christmas and I think everybody suffers a little bit don't they and no wonder! lol

One thing though, I never touch alcohol - never really liked the taste much and Coo rarely drinks too as it affects his meds.
He does have the odd beer at this time of year though, and so far it's not done any harm so I think we've done ok!

Coo's been no worse than usual and better than some other Christmas times I can think of, so all-in-all we've survived the Christmas splurge this time around - Woo hoo!

Just new year around the corner and we're home and dry!
I hope you're surviving things too!

Happy Christmas
(((hugs)))
Maz x

Carers & Christmas shopping...

Hi guys, well...are you all ready for Christmas?

I'm never ready - but I'm usually more organised than this! lol
First Coo's and then my nasty cold, kinda de-railed things a little bit and we've been caught a bit on the hop this year.
Luckily, I got a few things ordered online (in between sneezes!) so it wasn't too bad but really!

I never go shopping on Christmas eve...ever!
Now I remember why....it's a bit of a stress-ball-struggle isn't it! lol


Fast and ferocious are two words that spring to mind!
Shopping is kinda crazy this time of year and people seem to go a little nuts don't they?

Anyways...I guess it was real lucky I only wanted some last minute bits, a cuppa and...back home again! lol

Thank God for our Direct Payment and thank goodness Looby was here too as Coo would not have coped well with all that hustle and bustle and we'd both have been totally stressed out! I went with my mum instead and nothing much fazes her in a hurry! lol

We manged to hit the shops, stop off for a lovely cup of tea and casually make for home while everyone else was still fighting at the chocolate and perfume counters!

Now, if I can just find the quiet hour I need to finish wrapping parcels it'll all be done! - Woo Hoo!

Happy Holidays!
Maz x

Who carers when Carers are ill...

Hi guys, the dreaded has happened! I have a stinker of a cold!

I think it's the same one Coo had the other week and now my system has given up the ghost and fell down with it too- typical!

The weather is terrible too, rain and gale force winds - what a week!
My wee greenhouse has taken a bit of a battering and come to think of it, maybe me running around chasing the roof panels in the wet, has contributed to said stinky cold!
Note to self ...next time, just like Piglet here...let 'em fly...it's just not worth getting ill! lol

Anyways, my plant pots are strewn everywhere too so all-in-all our garden looks a sorry sight and it'll just have to keep as there's no way either of us are in good enough shape to sort it out yet!

So I got to thinking, just who does look after the Carers when they're ill? Well, that's a good question isn't it!
I think if you're lucky, family can come help out and if not...well, you're kinda on your own with things and just have to carry on regardless! Now that just isn't fair and I suspect most Carers are in the latter category and need to muddle on as best they can and I think that's easier said than done!

I'm lucky in some respects, as when Coo's awake, he can help out and make the odd cup of tea but then the down-side kicks in as he quickly tires, sleeps and...yes, you've guessed it...seizes. They're never far away that's for sure but at least, between us, we can mostly manage!

I really worry for those Carers where that is not the case and when the Carer is ill, the person they care for is not able to help at all! Who picks up the strings and helps them?
Probably nobody - We need a better system!

My mum and dad popped in just to make sure we were ok, at times like these  I'm kinda glad they only live a few minutes away! We have  a system though as sometimes getting out just isn't an option for Coo and I so the delivery man brings the shopping and if things get really crazy...I'll use some of my Direct Payment holiday and send for Looby!

Meanwhile, we'll just keep cosy indoors and wait it out!
Let's hope this stinky cold goes soon and...normal service can be resumed! lol

Hope you're fairing better in the sniffy and snuffly stakes where you are! lol
(((hugs)))
Maz x

Carers voices...

Hi guys, all Carers know how important it is to get their voices heard!

That's especially true when it comes to your local authority as it's generally the key to getting better services and support. With that in mind, I'm still heavily involved with my local councils personalisation and Carer  strategies. I figure, if you want changes and improved services, you need to be prepared to give some real time and get ready to...push!

Probably most Carers will be able to identify with this too...
In my experience, dealing with the Local Authority (or N.H.S.), usually means digging out your hard hat and flak jacket and preparing for the long-haul and it's usually very stressful and a real struggle for all concerned too!

That's why I feel, real Carers just like you and me must have their voices heard - it's important!  Who knows better than other Carers, just what is working (or not working for that matter!), with current services around caring?

I know it's not easy finding time, it never is for Carers, who sometimes feel pulled in all directions trying to negotiate the best deal they can! Really, what we all need to keep in mind, is Carers are one of the most essential parts of the system as without them the whole care system fails - it just doesn't work!
In most cases we the Carers, are the glue holding it all together so it really makes sense to just Care for the Carers! It sounds so simple doesn't it so why doesn't it happen?

In our area, this time at least, the local council are trying to get it right! To enable Carers to attend meetings and be fully involved, they've actually paid respite costs! Now, that sounds such a simple thing, but it's the difference between being able to give your input or be left out the loop!
They've asked lots of Carers and service users for their honest opinions, what they really think and they seem to have taken their views on board - now isn't that a new approach!

Thank God for this change in attitude as more than ever before Carers have been able to sit around the table with the decision makers and at the earliest stage - what a change!
I must say, I'm impressed with how things have gone so far and I'm pleased to see they have at last recognised the work and commitment Carers provide. It's been a long time coming but it is a real and positive step isn't it!

Hopefully things will continue to improve!
Keep strong!
(((hugs)))
Maz x

Quilting is Quite brilliant fun...

Hi guys! I've been trying my hand at quilting recently and it's been great fun!

Some lovely ladies from a local craft group came to visit my wee Carer meeting a few weeks ago and well, you know me, I like to try out any kind of crafts!
I was totally enthralled by all the lovely fabrics and just what the ladies had managed to create with them...I was hooked! LOL

Now, I've never really used my sewing machine much, if truth be told I actually bought it for my daughter some years back and have only, occasionally tinkered with it...until now that is!  Just like McDonalds say...I'm lovin' it! lol

Bearing in mind, I wasn't really confident on my own at all and it's not a quiet craft that I can do while Coo's sleeping either (sewing machines make a bit of a racket don't they!) so my quilting time has been a bit limited. Even though, I've  really only been working on my quilting for a couple of hours on a Friday, in three visits, I've managed to turn this wee pile of scrap material...



Into a wee baby's first Christmas quilt for wee baby B, our eagerly awaited Grand-baby!

So what do you think?




Now, some of the seams are a little bit wonky here and there, and it's definately not a work of art but...

I'm really rather pleased with it!

Wee baby B will know in years to come that Grandma made her very first quilt just for him or her! lol

I'm finding more and more that crafts and new experiences, really give me so much back, they make me smile and I have a real feel-good factor too. I think they're a bit of an antidote to the other stressful parts of my life and that can only be good for me!

I hope your happy too, try some crafts - it sure works for me! lol

(((hugs)))

Maz x

The new 'elf service...

Hi guys, Coo and I had a lovely day yesterday!

It was the local community centre's Christmas Fayre and it was brilliant fun!

Judging from the title of todays post...can you guess just what my job was? LOL

Here I am with one of Santa's littlest helpers...baby Bryce!
At 3 weeks old, isn't he a cutie!
Sixty children all went to visit Santa and  got some Christmas Chocolate!
They wrote their Santa letters and got to feed his reindeer too and all for FREE!

Our community is not the most wealthy and finance is usually a bit tight this time of year and as a Carer, I know first hand, just how challenging things can be at Christmas, especially if you have some little ones too!

Free events are brilliant and best of all?
Well, they raise community spirit and for a wee while, everyone feels included and equal and all the children get exactly the same regardless of wealth so job's a good 'un!

All-in-all, everyone shared in a real family Christmassy day and for once nobody needed lot's of pennies either so...smiles all around!

Happy days!
(((Hugs)))
Maz x

Carer Campaigning...

Hi Guys! I was feeling a bit pensive after my last post!

When I realised it was over two years since the 'Justice for Carer' march in Edinburgh I was shocked! It really was a great, feel-good experience that day, Carers did come together and speak up for themselves and it was great!

I think it's a shame though, there's been nothing like it since!

On reflection, I've come to think that, we Carers have not given up - not at all!

We're still active and if the others are anything like me, they're just as busy campaigning as ever but at local level instead, fighting the system for better services.

I guess that's no bad thing either, as everytime somebody pushes for service improvements it results in help for us all in the end!

So...we all must stand together and keep up the good fight as best we can!

(((hugs)))

Maz x

Meetings, Ponderings and poems...

Hi Guys, so...how did it go today at the meeting with my Local Authority? Well...pretty good in my opinion!
I managed to raise some points and speak up for Carers so I'm happy!

Today helped remind me of the time I joined with other Carers from all over Scotland to march and rally at our Parliament. Is it really two years ago? I hadn't realised but it was over two years ago my wee Carer group made the trip to Edinburgh and spoke up for themselves...so exactly what has changed? Have things improved at all for Carers?

Well, financially things are much the same - not good.
Carers allowance is still the lowest paid pension of all and really isn't fit for purpose anymore. Many of our politicians have said as much themselves and on numerous occasions too but it's still a real big issue that needs attention and the sooner the better!

On a positive note though, Carers have become more vocal and now do have some confidence to take on the big Care Agencies, the Local Authorities and the N.H.S. too for that matter. I think more and more often Carers are realising they have to step up and be prepared to lobby for changes and better services.

Two years ago a consultation which included both Carers and Service-Users would have been unheard of. Social Workers and their managers would have gone away wrote a document and probably said - take it or leave it!  This time around...this just has not happened!
The council, have actively engaged and asked Carers for their opinion on what does and doesn't work and that's a major mind-shift and has to be great news for Carers!

I think the poem I wrote two years ago for the march on parliament is still so very real and apt today, I guess we still have a lot more to do don't we...

Here's my poem...

*** ‘Just a little Peace’***

We don’t need any help, we’re managing fine,
Pile it on…pile it on…never look for a sign.
Carers work on with not much of a break,
They continue to care for a loved ones sake.

As the caring goes on and the load does increase,
God send us some respite, just a little peace.
Some time to go walking, kicking leaves in the park,
even just sleeping when everything’s dark.
The caring continues deep into the night,
we struggle and strive and continue to fight.
For help it is out there or so we are told,
but trying to find it...you need to be bold.

Some time for a break, to do something new.
Maybe just sit still and take time for you.
Reading a book or watching a show,
Finish something, not having to go.
As the caring goes on and the load does increase,
God send us some respite, just a little peace.


It’s not easy to spot us, we look just like you.
Carers are working and constantly too.
When others go home at the end of the day,
We still keep on working, minus the pay.
Please listen now, it’s so easy to find,
Yourself as a Carer and stuck in this bind.
Nobody knows how, it just happens unplanned,
as quick as that jar with the small grains of sand.


Heed what we say as we carry on,
caring and struggling way past the dawn.
we know lots of Carers who live in this way,
it’s not what they asked for, this role that they play.


Some time to themselves it’s not much to expect.
It’s down to government and Scottish Exec.
Some help with this task that never seems to cease.
as caring goes on and the load does so increase,
please send them some respite and just a little peace…

It still kinda covers all that I want to say.
Stay strong,
(((Hugs)))
Maz x

Coo and me and D.P.

Hi guys! Coo's latest anti-biotic run is finally over!

Things seem to be improving now and although tired from the latest on-slaught, we're both a bit more settled now so...result - woo hoo!
Looby's come to stay as this week as I've got lot's of pot's on the boil...what's new! LOL

Thank God for our D.P. (Direct Payment!), without which I just would not be able to manage the things that are important to me. It's amazing just how much the precious timeout gives me. It's not just about the time away, it's the fact I don't have to worry about Coo while I am busy. I know he's just fine with Looby and that's something of value as I can really switch off for a bit. All in all, it kinda helps keeps me sane!

I've a big meeting tomorrow with our local council, remember I mentioned, they had asked me to help with their new personalisation strategy? Well, tomorrow is the next stage.

You know, there was a time where I would not easily have spoken out in public and been comfortable to challenge authority, be it Government, N.H.S. or Council but I think being a Carer has changed me!
I guess, always having to keep pushing for services does tend to make you more assertive. it's a bit of a sink or swim situation at times and in my experience if you're not prepared to do your homework and then just go get 'em, well, you just don't get the help you need.

Now in an ideal world, it shouldn't be like this but I find it frequently is and that's why it's so important to me to keep speaking out for a better deal for all Carers!
So, let's give a wee silent prayer for every one of us Carers who can stand up and say...hey! We need your help and even better...this is exactly how you can help us!

We need to stay strong and hopefully one day, Carers will all feel supported and be able to access the help they need!

Wish me luck tomorrow,

(((hugs)))
Maz x

Anti-bio-land again...

Hi Guys, Coo's still poorly and back on yet another anti-biotic run.

We've been stuck at home this week as things have been a bit of a struggle.

We went as usual on Friday, for Coo's routine blood test and everything seemed fine but by Saturday evening he had a temperature of 39 degrees (102.2F) and was seizing a lot! He didn't really improve much over the weekend but his temperature came down a little so he decided to wait it out and see our own doctor on Monday - Coo hates the midnight dash to hospital and we avoid it at all costs!

Turns out he's picked up a bacterial infection from somewhere and needed yet more antibiotics!
Thankfully though, they are beginning to work now and he's feeling a little better today.

We're both shattered, apart from that, we're fine and glad to be out the other side of this latest health hassle!

While at home, I've kept myself busy with my harp and my craft box. Extra time at home is not the issue it once was.
I've found lots of ways to keep myself amused and have a little fun!

I hope things are a bit more settled this week and that you're having a more settled time where you are too!

(((hugs)))
Maz x

Carers Conference 2011

Hi Guys, it's been a bit of a busy week this time around!

On Wednesday I left the coast and travelled up to Glasgow for the annual Carers Conference.

It's always a good chance to meet other Carers and hear just what's happening to services in their areas and it seems cuts to day-care service in particular is being hit really hard here in Scotland.
***Now, that is a big worry!
Every Carer I know, desperately needs the precious few hours respite just to help them keep going!

In our caring situation, we don't use day-care services at all so I was not really aware how under threat this service is but I'm going to find out!

Carers Scotland...

I was elected last month so...for the very first time, I'm a fully fledged member of the Carers Scotland Committee! There's a lot of experience and also a lot of enthusiasm and passion within the group so I'm hoping we can successfully channel it all and help Carers get a better deal and make sure their voices are heard! We so deserve it don't we!

Wish me luck!
(((hugs)))
Maz x

Growing some smiles...

Hi Guys, I saw this and really liked the sentiment so I thought I'd share!

Wouldn't it be nice if, as well as growing veggies, we could grow some sunny smiles too? It's a real nice idea isn't it! I know I'd sure buy some, especially for those grey winter days when it's sometimes hard to stay positive, a bunch of ready made smiles would be just dandy then! lol


Incidently, it's still raining here!
That's rain every day of October so far!

Just like this wee lady here, I'm guessing, I'm gonna have a lot of use for my unbrella too!

Happy thoughts even if it is still raining!

(((Hugs)))
Maz x

Coughs & sneezes...

Hi Guys, how does the old saying go?
Coughs and sneezes spread diseases...well, they certainly do!

Coo's cold must have still been kicking around his system 'cause it's back! He's been snuffly and sleepy, pretty much all day.
I guess I'll be cancelling his blood appointment for tomorrow as with this cold, his white cells and drug levels will be all over the place anyway so there's no point in getting them done again until he's feeling better!

The weather here has been dire over the last few weeks, rain, rain and yet more...you've guessed it rain!
It's definately wellie wearing weather here! LOL
Now, living on the west coast, you'd think we'd be used to it by now, and we are...kinda! but no, even for here it's been like a monsoon recently!

I got soaked through, running down the garden to my wee green-house for some veggies earlier. Serves me right though, I thought I'd just dash out quick and didn't bother with a jacket or wellies!
Well...lesson learned or I'll end up sniffling myself if I'm not careful!

Let's hope this rain doesn't last too much longer, some nice sunny weather, even just a bit of a dry spell would be nice don't you think? lol

I hope you've got some sunshine where you are and more importantly, at the very least some sunny thoughts to cheer you! Keep cozy (and dry!).
(((hugs)))
Maz x

Peace Reigns...

Hi Guys, peace has been restored and that wee cuppa definately helped me keep strong this week! LOL
Coo's mood swings are now over and thank God for that! I was beginning to lose my patience but it held out and now, things are pretty much back to normal - Yeah!

I was so busy last week and I guess I didn't see the warning signs! You know, at times, I sometimes forget how poorly Coo is and I suppose, it's probably the same with lot's of hidden disabilities. Well, the person looks ok, you're busy and struggling yourself and you just forget to make the necessary allowances...until it's too late!
One thing's for sure, it's not long before you're brought back to earth with a bump and need to cope with a whole lot of other issues and quickly too!

No wonder I say the life of a Carer is never boring!

I guess you just do the best you can and learn how to roll with the punches! lol


At least it's all quiet now so...Happy Days! LOL

I hope it's happy where you are too!
(((hugs)))
Maz x

Hard hat time again...

Hi guys, It's hard hat and flak jacket time here yet again and just a touch difficult!
We've got the usual seizure activity but for some reason major mood swings have reared their ugly head and it's been pretty much awful today.

I'm not sure what's caused it but at this point, it's not really the main issue, keeping a lid on things is though and it 'aint easy!

Sometimes, I'm not sure what's the most challenging, all the seizure activity or the moods and hassles that come along with them!


just now...well, I'm having a wee cuppa and...
...trying to hold onto what's left of my patience!

Please God, let things start to improve soon!


I hope it's peaceful where you are!
(((hugs)))
Maz x

Carers Scotland...

Hi Guys, I've been elected!
It's to the Scotland board of Carers Scotland!

I've been at a few of their conferences and as you know, I've been campaigning for Carers rights for a while now too so I'm looking forward to this new challenge!

I just found out so I'll post more details when I have them!

(((hugs)))
Maz

Birthdays...

Hi Guys, it was my birthday yesterday so another year older!

I don't really feel so very much differently and all things considered, I'm doing pretty ok well, in my book anyway! LOL I didn't go out for lunch (the usual birthday treat) as I was already working at a conference so I guess that's something still to come! woo hoo!

Good news though, Coo's anti-biotics have now kicked in, he's doing much better and Looby's been here this week to lend a hand too so...job's a good 'un! LOL
I'm glad things are settling a little bit for Coo as I'm concious the weather has really cooled here and flu-time is almost upon us again. Now 'aint that a wee cheery thought! lol I really must sort out the flu jabs soon!

It's no joke though!
While the news and weather for southern parts is dry and record-breaking sunshine, here...

It's been blowing a hooley and we've had monsoon-like rain today!
For a small country our weather sure isn't consistent! While the south sun-bathe it's definately wellie wearing weather here!

Never mind, it's always warm, dry and cosy indoors! LOL
I hope you're keeping dry and cosy too,
(((hugs)))
Maz x

Back in Anti-bio-land...

Hi Guys, Coo's back on the anti-biotics...again!

The not so lovely cold that's been kicking around his system, has now made it's way into his lungs. He's got yet another chest infection and we all know what that means...a temperature and lot's more seizures - poor coo!

Thank goodness Looby's been here today as I had another meeting and really wanted to go! It was on our campaign about supporting local community centres here in Ayrshire.

Our council is thinking about closing them and the group I'm involved with are trying to make them think again and I really hope they do!

Sometimes, I think do I really have time for everything, caring, campaigning and the other issues disability brings with it and then I think, can I really afford not to!
so...
From somewhere the strength comes and the fight goes on!

Upward and onward!
(((hugs)))
Maz x

More on Personalisation...

Hi Guys, remember a few months ago, I posted saying, I was working with my Local Authority?
Well, I've been at it again! lol

The Council asked for Carers and Service users to come along and offer their input on the new strategy for social care and we did!
It was an interested afternoon.
Around our table were Carers for people with physical disabilities, mental health issues, elderly and children so it was quite a good cross-section.

I seemed to be in the minority as a Carer whose family already had a Direct Payment up and running so I was happy to share my experience of just how it works for us. I explained that I now wouldn't be without it and don't know how I managed before!

I'm glad things have moved on.
At least disabled people and their Carers are now asked what services they require and don't just have to accept what is offered in a take it or leave it kind of way!

It's really great more people now feel able to stand up for themselves and push for better services as in the end, this can only benefit everyone!

I say Power to the people! LOL
(((hugs)))
Maz x

Hard hat time again...

Hi guys, I've been down with a cold this last week and worse of all I have now shared it with Coo and we all know what that means...lot's and lot's of seizures!
I've had to dig out that hard hat and flak jacket again!


I think, we're over the worst now and Looby's been a Godsend!

I'm so glad we have our Direct Payment as before, at times like these, I always felt torn and troubled asking her for help but as Looby's our P.A. too and it's her job, it's now a lot easier to manange. She can usually move things around and come stay for a bit and that makes all the difference!

I hope things improve soon and until they do...


I'm keeping cosy warm and spoiling us both with lot's of lovely hot-chocolate!


I hope you're keeping comfy and cosy where you are too!
(((hugs)))
Maz x

Back from Respite...

Hi guys, I'm back from respite!
Things went well, Coo was no worse than usual and Looby coped just fine and best of all, I had a good few days away with my mum in...
Blackpool! Woo hoo!

I had been a bit unsettled before I left as Coo had some real problems last week but I'm pleased to say things went well and so...it's all good! lol

The famous tower has a revamp!
Now just how cool does this look?


Impressed? I sure was as I tentatively stepped out! It's a very surreal feeling, I got a bit of a heart flutter standing right out there in the clouds! It's kinda un-nerving but certainly an exciting experience that's for sure - wow what a rush! lol

Respite, what does it mean for me?
Well, it's really a time to switch off from Carer responsibilities and just chill, please myself and generally enjoy the freedoms most people kinda take for granted!

I'm so greatful for the Direct Payment that makes it possible for my few precious days away and I guess it's helps that I know Coo's in good hands with Looby. It makes all the difference in the world and means I can relax and get a real benefit too!

You know what?
I love that little bit of me time, It reminds me to look after me too and with that thought...
Here's some Blackpool rock just for you!

Please remember to look after you too!
(((hugs)))
Maz x

Respite...

Hi guys, things are difficult again here. Coo's poorly, his seizure level is up and he's either sleepy or has major mood swings and sadly lot's of Carers will know exactly what I mean!

I've been looking forward to some respite for ages.
A few days away with my mum (as usual!) and it's come around this week of all weeks!
Usually before a respite trip, I'm excited all week long and busy sorting things out for the trip. Maybe buying a few wee bits too, you know how it is but this week's been very different.
Coo's seizures and moods and the way they've been, well, I'm kinda struggling.
On one hand, I feel, thank God, just stuff everything else, I need the break! but on the other hand I'm thinking, with all the turmoil in the house around Coo's moods, it's not been pleasant planning the trip this time around at all so will I get the happy carefree time away I usually do? I hope so!

I've given Coo the meds he uses when moods are just too stressful to cope with and I'm kinda hoping things settle a bit before I leave in the morning and if not? Well, I'm confident Looby will cope and we'll just have to deal with it when I get back!

I hope things are more settled where you are.
(((hugs)))
Maz x

Time out...

Hi guys!
Well, after the last two days of meetings, I already had made my mind up we were going to the park today! Well that's if the weather would let us of course! lol
It was a bit of a slow start today as Coo had a bad night with 15 seizures so it took a while to get things back on track again but by lunchtime we'd donned the wellies and were all good to go!

Off we set, that's Coo, Looby, our wee Jack Russell Angel and me! We went to Eglinton Park which is always a pleasure!
It's such a calm, peaceful place whatever time of year you visit. You can see what I mean about it being a pretty place.
I just love it...can you tell? lol
I think one of the things I like about Eglinton, is their really friendly and relaxed cafe area - it's great! It's one of those places where you can take you're wee dog in with you and have a cuppa and a snack. It's a bit of a Godsend really as after a wander around the park Coo starts to tire and a coffee and somewhere for a wee seat makes all the difference and we don't need to rush off home!

In the end, we decided to treat ourselves and have some lunch there - no cooking for me so...Result! woo hoo!

I'm giving the Tournament Cafe a...

'Maz's Golden Paw Award' for being such a people and puppy friendly place - well done!


Even the muddy paw prints in the car didn't matter today but I'm considering another option...

What's the chances of training a wee Jumpy Jack Russell to wear these eh?
I don't think it'd be easy that's for sure! lol

What a great day!
Wherever you are, I hope you're having a great day too!
(((hugs)))
Maz x

Coo's bloods...again...

Hi Guys, things are still a bit on the difficult side here I'm afraid and it couldn't have come at a worse time! I'm busy again this week with social services and it's important! Then again, I guess there never is a good time for health hassles is there! lol

I think Coo's drug level is probably too high yet again, it's been steadily climbing this last month!
He's been sleepy or asleep most of this week again and he's short tempered and has the usual increase in seizure activity too. He sure needs more blood test done even though they're not due for another week!

Luckily Looby will be here to keep an eye on things so I'll still make it out to my meetings ok but it's always more difficult to concentrate when he's poorly and for whatever reason, I can't be there for him.

I guess all Carers feel a bit torn-in-two from time to time. I think life and Caring is sometimes a bit of a tug-of-war but it kinda goes with the territory doesn't it!


I hope things settle a little soon as we could both do with a wee quiet spell! lol
It's so important for Carers to be listened too so...
Wish me luck with Social Services!

(((hugs)))
Maz x

Carers and Angels...

Hi Guys, I came upon this quote again today an thought I'd share!

It's funny but when I'm kinda struggling and things are a bit difficult, I seem to stumble across this quote or maybe this quote just seems to find me!



We are each of us angels, with only one wing. We can only fly by embracing each other.

*Luciano De Crescenzo*

Isn't that a pretty phrase?
I think so!

It always inspires me and I think it's really so very apt for Carers.
I find it quite uplifting and some how it makes me feel stronger!

However I find it or for that matter it finds me, I'm just glad that it does keep popping up from time to time!

(((hugs)))
Maz x

Coo's still got a sore arm...

Hi guys, I left for my meeting just after 8 o'clock this morning as planned and that was a bit of a result considering the week we've had!

Coo has knocked his arm again during yet another seizure so Looby was going to the hospital with him...well, that was the plan when I left this morning.
So...what happened?

Well, nothing really!
Coo decided, once he'd got himself awake and together, maybe he'd just leave it for another day and see how things go and Looby thought it best to go with the flow as it were.
In the end, it boils down to is this - it's Coo's arm and it's Coo's choice!

I hope he doesn't knock it again tonight though as it'll only make matters worse.

In other news - My meeting today!

So, how did it go?
Well, it was really interesting!
Our Local Authority is working towards a more personalised approach to providing care for disabled people and that's where my input as a Carer comes in!

It's so very seldom Carers ever get the chance to shape policies that untimately will have an impact on both their life and the person they care for. Even to be involved or have their voices heard at all is unusual so I'm definately up for the challenge - can you tell! LOL

To be fair to our council, the service we buy with our Direct Payment (D.P.)is very effective. I would not willingly be without it now! Those two nights sleep and the few precious hours to myself really make the world of difference to Coo and I.
Things were so very different when we struggled to cope alone before our D.P. began!

Type Direct Payment and click my Search this blog button on the right for more of our D.P. related entries!

I'm passionate about support for Carers!
I know how very different things can be with the right support and what a benefit a good service can be - it saved us big time!


I'm hoping this involvement of Carers, at these early stages in the process, is a good omen of things to come and that their involvement and sharing of experience will lead to better services - now wouldn't that be an achievement!

I've a feeling it won't be easy but it will be worth the effort!
(((hugs)))
Maz x

Coo's arm...

Hi guys, Coo's mishap is still a problem!

We saw the doctor today for Coo's usual blood tests.
While we were there, he had a look at his poorly arm - it's painful and now developed a bit of a clicking sound when he moves the elbow joint, well Coo never does things by halfs! lol

The up-shot is, he's hurt it during a seizure and needs to go to the A & E.
As our GP puts it so aptly...
"I do try me best but I 'aint got x-ray eyes!" He is a bit of a character, our doctor don't you think?
I guess, with all the scrapes he's seen Coo and I through over the years he's more of a friend than just our doctor!

Anyway, Coo's decided to wait - he's never very kean on visiting A & E! and our hospital is quite far away and Friday nights there are usually bedlam and best avoided if at all possible!
His reasoning is...one more day won't hurt things and it's his choice I suppose!

Hey-ho, looks like another hospital visit is definately on the go tomorrow!

Wish us luck and a speedy in-and-out too! lol
(((hugs)))
Maz x

More mishaps...

Hi Guys, We've had a little mishap...well Coo has anyway!


I'm not sure exactly what happened but Coo's hurt his arm. He can't remember giving it a knock or anything and he has been limb jerking a lot this week so it's probably seizure related but who knows!


He has an appointment to get bloods done tomorrow so we'll let the doctor have a wee look at it while we're there!

In other news...
I've been busy with my Local Authority this week!

They were looking for Carers to help them plan their new personalisation strategy with social services so of course I agreed!
It's so seldom Carers get the chance to be involved with the policy makers and especially at a stage where they can influence the strategies and get hopefully a better deal!
I've a few more days contributing at workshops and I just hope they listen and the Carer involvement really helps us all get a better deal!

Wish me luck...I've a feeling I'm going to need it!
(((hugs)))
Maz x

Settled...

Hi guys!
Things are a little bit more settled here and Coo's doing much better! Thank goodness for that!
Best of all...the sunshine has made a comeback! Woo hoo!

My pretty Tigerella tomatoes are coming on a treat! They taste really sweet too and are so much better than the shop-bought ones - result! lol

So, how was this week?
Well, basically it's all good! lol
I'm just enjoying the slower pace after last weeks struggles with Coo! I hope things stay settled 'n' sunny for a wee while - I sure could do with the rest! lol

Now, here's a thought...sunny care free days...wouldn't that be nice!
Hold that thought...
I really love this image, it seems to say freedom to me and it always makes me smile even when the sun doesn't shine!

(((hugs)))
Maz x

Carer Struggles...

Hi guys.
What a night!
I'm not sure what has happened but Coo has taken another tumble. He was seizing every 20 minutes last night so we're both shattered and today is kinda cancelled...well for a little while! Once I've had another cup of tea and got it together it'll all be ok!

I know he's cut his mouth and his limbs are aching but other than that I'll just wait till he's fully awake to sort out the damages - poor Coo!

Other than that, it's raining again so I'm going to don my wellies carry on regardless! and hope for more settled days,
(((hugs)))
Maz x

Testing times and Sunnier times too...

Hi guys, thankfully I can report some sunnier times this week!

The lovely sunshine has come back to share it's warmth and best of all Coo was able to persuade the medical people not to sedate him during last weeks tests, at least he didn't have to worry about seizing during the procedures and that was his (and my), main worry!

We managed ok. At least that bit is all over and we just need to wait for the biopsy results so fingers crossed everything will work out ok. I'm a little bit worried how things will fare, especially as we now know, Coo will not accept an anaesthetic in a hurry - let's just hope it doesn't come to that!

In other news...
Looby and Steven had their first scan so...meet wee baby B!

Coo and I are going to be grandparents! Now how about that!
Looby and Steven got their scan at the very same time Coo and I were in another hospital having his tests done!

It was good we had some pleasant news after such an ordeal for Coo.
How are Looby and Steven? Well all they could say was - "thank God it's only one baby" it seems there's twins in Steven's family and they both felt one was just fine and dandy! LOL

Our wee baby won't come until the new year but my goodness It's exciting already! LOL

I think I've been stung by the smiley bug! LOL

Happy Thoughts and (((hugs)))
Maz x

Tumbling times...

Hi Guys, things have taken a bit of a tumble here!

Coo's been poorly and he's stressed out too - so yet more seizures are kicking around here right now!
He's had some troubles for a wee while and our doctor referred him to hospital - good you'd think? Well no...not to Coo!

He got the appointment in yesterday, it's for next week and already He's in a major flap about it. We've had major hissy-fits and grumpiness all day and I've been trying to be patient as I know he's upset!

Next, he's had a run-in with our son and that's never a good thing as they're kinda alike and neither really likes backing down - Typical!

Well, he's eventually admitted today, it's not the procedure he's bothered about, it's the fact they want to sedate him that's really stressed him out and now I think about it, if I had sleep seizures all the time, I'd be worried about that too!

So, we're back on the meds we keep for back-up at times such as these, to help calm things down. Poor Coo, I hope they start to kick-in soon!

I'm not really sure how I feel about this latest health problem.
I don't think I've had time to really take it all in yet as I've been too busy pacifying Coo!

What is it they say?
The life of a Carer is never easy?
Well, it's never boring either!

I'm posting a rainbow picture today...


I love rainbows, they make me smile and however stressed I feel, I always find them so very calming!

Let's think some happy thoughts and keep our chins up!
I hope things are more settled where you are!
(((hugs)))
Maz x

How does your garden grow...

Hi Guys, well how does my garden grow?...pretty well I'd say!

In the greeny...


My fancy Tigerella (stripey) tomatoes are just peeping out and they're looking pretty good so far!
I hope they're as tasty as they look!


Remember the T.V. advert...Beans means H***ze?
Well mine sure are not the fancy brand named ones! lol

What do you think?

They're looking pretty hot!
I think it's those zingy flowers!
Who knew about them? I didn't!
They're a really vivid tangerine shade and look good enough to eat!
Let's hope the beans are too!



Last but not least...
The strawberry patch!


These are all wee alpine ones and there are a lot of them ready just now - woo hoo!
...and the bigger ones?
Well, they're still green and in need of some serious sunshine to help them along!


I've had a happy few hours in the garden today and it's been great. It all seems to be sprouting up everywhere!

Let's hope for some sunshine to help those strawberries along or at least some warm sunny thoughts to be going on with! lol
(((hugs)))
Maz x

Hospital 'n' rainy days...

Hi guys!
I guess the rainy days are back again - it's been blowing a hoolie here and lashing with rain!

My wee plants are still safely tucked up in the greenhouse and it's well into June now.
What a month - we've had all the seasons! lol


Coo's been at hospital again to see the Neuro and things have kinda gone as we thought. They're not going to do anything more for the time being.

It seems the AED's (anti Epilepsy drugs), he's on just now are as effective as they're going to be and any more increases will not really help - already been tried!
I guess he's stuck on around 10 - 15 seizures a day and that may sound a lot but it's been worse...a lot worse! Three years ago, after a nasty run-in with pneumonia, it was upto thirty seizures every day for months on end so on balance... we're kinda ok with things - well, we can manage put it that way! lol

I think so long as we take time out when we need to and stay home when we can, things will be ok!
I'm glad we've got the wee greenie and my array of fruits and veggies on the go too as it keeps me busy and even Coo's began to take a bit of an interest - woo hoo!

Who knows, maybe even the sun will come back for a visit!
Let's hope so and if not...?
...let's keep those sunshiney thoughts for warmth! LOL

Meanwhile try this wee kitten smile for size...

Works for me! LOL
(((Hugs)))
Maz x

Sunny Days and Carers...

Hi guys - the sun has made a come back...yeah! lol

It's been cold, grey and very wet here over the last few weeks, infact give or take a day or two, May was pretty much a rainy month!

June has brought some lovely sunshine with her and I'm delighted! My strawberries are all in flower now and I'm excited at their promise of lovely fruit to come!

Even the flowers look sweet and pretty don't they!
Coo and I, have been taking things a little easier this week and spent some more time at home. The warmer weather makes him feel really tired so it's easier managed if we can stay home more, especially in the afternoons when he seems to tire most.

I must say though, for someone who doesn't like gardening, Coo's been pottering around today! I'm hoping this gardening lark is a wee bit infectious as he sure could do with some fresh air around him!

The sun so cheers and lifts the spirits doesn't it! It's just so soothing to feel it's warmth on your face!


Grey days make for grey moods so...
let's hope we all have some sunny days!

Happy thoughts,
(((hugs)))
Maz x

Happy news from me to you...

Hi guys can you guess my happy news?

Well, after the 'Winter wonderland of Looby & Steven's wedding in December...

We've had some great news!
...We're going to be grandparents! how lovely is that!
The wee baby won't be born until into the new year but I'm excited already! lol

We've not had little ones in our family for quite a while so this should be fun!

I decided to try my hand at knitting something for Looby's bottom drawer...(wee hidey hole for baby things!).
...and here they are...

Cute or what? LOL
Knitting, hasn't really been an interest of mine but I wanted to make a wee knitted something for my very first grand baby!

The loom is out and a wee baby blanket is on the go at the minute too.

I'm working up to a wee baby jacket next but there's plenty of time so I'm in no rush. I'm sure I'll get there.

Big smiles and (((hugs)))too, hope you're happy and doing ok where you are too!
Maz x