Follow by Email

Monday, 28 December 2009

Sandy beach? no...snowy beach!

Well, how's you're weather?
It's still positively Baltic here! LOL

In fact here's a snap of our sandy...er...snowy beach! LOL

I just had so share as it's such an unusual photograph!
It's on a local island and I can't remember the last time the snow lay on the sand like that!
I do know it's a serious issue but I really don't see much evidence of glabal warming here!

maz x

Carer woes...ho ho ho...

Hi Guys,
Well, we managed to avoid the usual christmas hospital admission but only just!

We had a brilliant day out at Coo's sister Diane's a lovely meal and good company with lots of laughter and everything was going swimmingly!
Over the space of the day, Coo had most of a bottle of de-alcoholized wine (Merlot) thinking he'd be fine as it wasn't alcohol and he seemed to be in great form and perfectly ok...until we got home that is!

His seizures were terrible, every 15 minutes from midnight until five o'clock! Around 3 a.m., I was beginning to think maybe he'd need the hospital after all but things seemed to be getting a bit less aggressive then and he eventually stopped around 5 and slept for a few hours - thank God!
Poor Coo, he thought he'd found the perfect substitute that he could really enjoy with a nice meal!

Anyway, in the morning we both slept late, cuddled up, watched telly and ate chocolate!
...and Coo? he seemed a wee bit shaky and sore but otherwise fine so all's well that ends well!

Just New year to go and guess what?
I don't reckon there'll be any wine...de-alcoholized or otherwise!

Then again, Coo thinks it may have been the bowl of cerial he ate late on...here we go again with the 'was it or wasn't it' discussion...

I hope things are more settled where you are!
Take care,
maz x

Monday, 21 December 2009

Carers & Christmas? Hospitals of course...

Hi Guys, we're just back from hospital.
What would a Carer's Christmas be without a visit to the A & E!

Coo cracked his foot during a seizure last night Ouch!
Problem is, every time he had another seizure the limb jerking was pretty bad and by morning he just couldn't cope with the pain any longer.

We called the doctor, who advised us to take a trip to A&E for an X-ray.
Well, after a day of being poked and prodded at the hospital, it's good news - nothings broken! Woo-hoo!
It's a soft tissue injury and while painful,(especially if you're seizing, bouncing about and limb jerking said foot all the time - it will heal on it's own... eventually!
So maybe not so Woo-hoo after all but at least it's not an admission this time!

I don't think it helped any when I told him..."You know Coo, there are easier ways of getting out of Christmas shopping"!
His answer...un-printable! LOL

Let's hope he heals quickly!

and it's raining here again so 1,2,3...it never rains but it pours!

maz x

Thursday, 17 December 2009

Winterfest...

Hi Guys - We've been away!
Coo and I have been travelodge-ing it again!
I managed to get a deal for Glasgow Central at £19 a night...result Woo Hoo!

We got up and organised and left Tuesday lunchtime bound for the big city for two whole nights and it was brilliant.
George Square is all lit up and twinkly, there's an open air cinema and gallons of hot chocolate to help keep the cold out!
***George Square webcam***

We didn't really do much shopping but they were all open late and the whole place was jumping!
We went to the Peoples Palace and it was great fun, I got my picture taken in the steamie using an old mangle!
I don't think I'll moan again about the washing machines taking too long - heaven only knows how they managed with that old contraption, it'd have had my fingers off and no mistake!




The winter Gardens are lovely, so nice to sit and have a cuppa in amongst the flowers especially in chilly December!
I can definately recommend the scones too Mmmmm! LOL
Here's a pretty bird of sorts snapped in the gardens.
Not so much wild life more...
...wired life eh!


Ah well, Coo's tickled pink!
While in Glasgow, we found a music shop selling really good quality guitars and at a nice price too so...Santa came early for Coo this year!
Mind you he's been asleep since we got back so I guess he's found it all a bit tiring...me I'm still bouncy and in the pink let's hope it lasts! LOL

I hope you're having some fun where you are and if you can, try Travelodge-ing it! It's fun, cheap and cheerful!

maz x

Tuesday, 15 December 2009

They're coming...oh no they're not!

Hi guys,
I guess I'll need more of them as Robert puts it 'diversionary tactics' - the social services cancelled today - so Coo was all upset for nothing Arrrrrg!

They'll come next week to review things instead.

Never mind, at least they called to cancel!
I've heard other Carers say in their experience, sometimes social services just don't turn up at all...shocking!

Onwards and upwards...hey-ho where's that salt dough! LOL

I feel a craft day coming on!
maz x

Monday, 14 December 2009

Social Services 'n' salt dough what a combo!

Hi Guys!
It's been a busy week!
Coo's been up 'n' down like a yoyo, his moods are all over the place and today he has the tell-tale rash that means there's yet again something wrong with his bloods!
We went to get them done today so by Wednesday, we will know for sure.

Mean while - (as if we don't have enough in added stresses!) - Social Services called yesterday to arrange a visit: they want to review Coo's care package.
Now, while I'm not overly concerned as care-wise things have not changed, Coo on the other hand, is in a bit of a state. He doesn't cope well with change and is concerned if they withdraw the help we have now, we'll struggle to cope.
He knows how tired and near burnout I was before!
I understand how he feels.

The Direct Payment care package we have currently, buys me two nights sleep, allows me to keep my one remaining work session and even a few hours out on a Saturday with my mum...shopping!

I know our Local Authority are struggling financially and just hope this isn't an attempt to cut this much needed support!
I have said previously, I don't know how I coped before without this help and would not want to go back to that place again but I'm not going to panic!
It won't help Coo any if he thinks I'm worried so I'm going to wait and see what happens - they're coming tomorrow.

Enough of the gloomy stuff...

In an attempt to take Coo's mind of the meeting, I decided to make some salt dough up to take to our group tonight - we run a wee group for adults with disabilities.

It was brilliant fun, they all had a ball making Christmas Trees, stars and baubles for their own tree at home.
Craft is so good!
Everybody gets in a sticky mess and somehow in the end something pretty is made and everyone's happy! LOL

Coo forgot the meeting tomorrow, we made an assortment of 'decorations' like these
and...there were lots of smiley faces around!

Job's a good'un!

maz x

Thursday, 10 December 2009

Singalong ~ Carers Alphabet...

Hi Guys, I was at the local Carers Centre and my wee Carer group sang a song so here it is...

The Carers Alphabet (tune: The Christmas Alphabet!)


C ~ Is for the Carers standing round the Christmas tree.
H ~ Is for the Hospitals we always have to see.
R ~ Is for the Respite we need but never get.
I ~ Is for the Irate way we feel when needs aren't met.
S ~ Is for the Stress we deal with every day
T ~ Is for the Tension when we can't come out to play.
M ~ Is for the Medicine we administer all day long.
A ~ Is for the Anguish we feel when things go wrong.
S ~ Is for old Santa who helps us to forget...

So be good and you'll find it all,
in your Carers Alphabet!

What do you think? Kinda catchy! LOL
tra~la~la!
maz x

Wednesday, 9 December 2009

Christmas Reindeer...

Hi guys!
It was our Christmas Fayre this week and it was great!
I was an...Elf! LOL

All the little ones went to visit Santa Claus and got a wee selection box (chocolate)!



Once the grotto quietened down a little, Santa's reindeers arrived on the scene.

You should have saw all the wee faces!
Their eyes were big as saucers and no wonder...
They all got to pet Santa's reindeer!


Best of all everything was FREE now how cool is that!

So 150 children later, what seemed like a million raffle prizes, shovelling reindeer poo and sore feet from dancing in red pixie boots, I had a well earned cuppa & mince pie(after washing my hands of course!).

It was tiring but also a lot of fun! LOL

Roll on next week and Pantoland! LOL

Cheery Christmassy thoughts,
Love
maz x

Monday, 30 November 2009

Saint Andrew's Night...

Hi guys, we had a brilliant St Andrews night!

For those who haven't visited before, Coo and I help run a wee group for adults with disabilities in our local Community Centre on Monday nights.

Tonight there were 5 very handsome kilted pipers booked to play in the local church (across the road) for a big civic St Andrews night bash.
They needed a place to warm up and tune their bag pipes so I said they could use our building.

Well, they were handsome and it was too good an opportunity to miss so I pinched them for 10 minutes! LOL
I told them I had a group for disabled adults in the next room and could they please visit us for a few minutes before they went on their merry way and the little diamonds that they were, they agreed!

They played us a few tunes!
We did a wee jig!
and a good time was had by all...brilliant.

We all so enjoyed the inpromptue pipers! LOL

I am always heartened by peoples kindness and generosity especially when it's so unexpected!

What a brilliant night!
Smiley faces all around!

maz x

Sunday, 29 November 2009

Winter, Carers & Christmas...

Hi guys, with all the recent hassles surrounding Coo's meds, we've been at home a lot the last week so I've had some thinking time and I'm not really sure if that's a good or bad thing! LOL

On the meds front?
Coo's bloods are still a problem but here's hoping there's some better news tomorrow!

Enough of that...

I've decided I kinda like wintertime - even if it is still raining here! LOL
All the hot chocolate drinking and the snug woolly hats and scarfs! Warm hands in brightly coloured gloves and the even brighter rosie cheeks and cheery smiles to match! LOL

Our Community Centre put up it's Christmas Trees yesterday and I suddenly realised it really is just around the corner, I mean, Advent's in a few days and I've not even bought a chocolate calendar...yet - I'm definately slipping this year! LOL

Talking of Christmas, reminds me of a quote I came upon last year so I thought I'd share...


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.

Now that I've realised Christmas is really coming and I need to get, shopping, organising and in general moving - I've decided I'm not going to...panic!
Instead I'm going to try and relax and stay calm this year!
Well that's the plan anyway! LOL

Keep cosy and keep taking the hot chocolate - (it beats the pills any day! LOL)
maz x

Wednesday, 25 November 2009

It's raining in Carer land...

Hi guys!
Well, the rain has still not stopped here at all!
In fact here's our local train station: You can kinda see why they suspended services can't you! LOL

We are used to wet weather but the sky is so heavy and grey it's having a knock on effect on everyone's moods!

Coo's been very down, his seizure pattern has not improved even though we reduced his meds. He's having his blood's re-tested tomorrow so we'll speak to our Doctor then.
I have to say, there is a new pattern emerging, thank God we keep a detailed seizure diary as these things can be spotted fairly quickly.

It used to only be when Coo's AED (anti-epilepsy drug) levels were too high, that his mood swings kicked in but now I think this is happening when they're too low as well!
The last time we were in to see the Doctor, he said a lot of people were having low mood issues mostly due to all the dull days and change of seasons but I'm pretty sure Coo's are related to his drug levels too.

I'm definately going to explore this further either with our doctor or his Neuro.

Apart from the usual hassles increased seizures bring and the current flippy mood changes - everything else is well...hunkydory! LOL

Rainy weather?

All you need is...

A great BIG brolly and an even bigger smile!

Just as well I kinda like the rain 'aint it!

maz x

Thursday, 19 November 2009

Coo's Bloods...

Hi Guys, as if things were not up 'n' down enough at the moment!

I've tried unsuccessfully, to get Coo's blood results already this week and it now turns out the tests need to be repeated Arrrgggghh!

Our doctor will phone tomorrow and let us know why he wants them re-done. I'm not sure if there's a problem or the lab's lost 'em but time will tell, I suppose!
Mean while, poor Coo's like a pin cushion as it is and will need poked and prodded again so we're less than impressed!

On the upside, his mood has improved a bit and he's less sleepy this week so his drug level must be in a better place by now!
He aint Mr. Grumpy so it's all good! LOL

Oh and incidently....it's still raining here! lol

That's after 18 days practically constantly tipping it down too!
So...just like this little piggy who has the right idea...
It's umbrella and wellies here I come! LOL

maz x

Thursday, 12 November 2009

Dreaded drug see-saw again...

Hi Guys, it never rains but it pours!
Who ever said the life of a Carer is dull?

We seem to be up and down on that dreaded drug see-saw again.
Too little drug in the system, it's seizure city and too little well...ditto!

For the last two days, Coo's slept and seized around the clock.
Our Doctor has advised we drop his AED (anti epilepsy drug) right away.

We were going to wait until he had his bloods done on Monday and check the levels first but as things are not getting any better we've ditched that plan and decided to go with his advice.
We're going to drop the dose tonight in an attempt to settle things down a bit.

Wish us luck,

maz x

Monday, 9 November 2009

When the Carer needs care...

Hi Guys, well...Coo shared his cold with me - how nice!

I've had a bit of a temperature, sore throat and sneezes since Tuesday but thankfully I think I'm eventually kicking it! LOL

Poor Coo's still suffering the last of the sniffles and it's taken him twice as long to kick it as me!

All I can say is thank goodness were both now on the mend! lol



All we need now is a dry day to get out in the park for a bit and kick up some of those leaves!

I hope you're avoiding the sniffles where you are.
maz x

Tuesday, 3 November 2009

That Carer Roller Coaster...

Hi Guys, things are a bit brighter here!
Thankfully Coo seems to be over the worst of his cold.

His AED (Anti Epilepsy Drug) level is still too high but he thinks this is down to his temperature and sniffly cold so we're going to hang on in there, wait it out and see what happens!

We're at home a lot more as Coo seems to have bursts of energy and then fall asleep again really quickly so it's still a bit of a roller-coaster ride as one minute he's bouncing about and the next he's out cold!

His seizure level has risen a little, well...he's got around 12 - 15 seizures a day. While that's not easy, it's a manageable level, considering last year he was having 30 a day so we gotta keep looking on the bright side!

But enough of that...

Our wee club, the one we run for adults with disabilities had their halloween party last night and it was brilliant!


Coo had a sleep in the afternoon so he'd be ok to 'party' lol
We had an assortment of witches, devils, ghouls and lots more besides!
We dooked for apples, danced, sang karaoke, had a much needed laugh and generally chilled out and it was great!

I always feel better about things after our wee club as it always puts things back into perspective.
Despite all their disabilities and health issues it'a a very happy club, there's always lots of fun and laughter!
Kinda makes you realise what really is important doesn't it!

A chilled out and happy, smiley,
maz x

Wednesday, 28 October 2009

Hard hat time again...

Hi Guys, it's hard hat's and flap jacket time again.

Coo has been poorly over the last few nights and I was starting to worry, what was the cause this time.
He's been tucked up in bed most of the day and it turns out the high temperature has turned into a cold yet again and the sniffles have arrived!

At least now we know the reason for the seizure increase, it's less of a worry and he's due to see the Doctor tomorrow.

While Coo's been tucked up in bed, I've been taking things a wee bit easier myself. The seizure alarms we use now, let me wander around freely at home and in the garden - though not an option today as it's practically Baltic here!
I know they'll alert me when Coo needs a hand and that gives me a bit more freedom.

I've pottered about the kitchen and got the soup pot out as I know when I don't feel well a comfy bowl of soup is usually all I want!
Poor Coo, he's getting soup if he likes it or not! LOL


Hubble, Bubble, Toil & Trouble...
well, it is that time of year isn't it! LOL

Here's to comfy, cosy and warming soup...Mmmm!
Take care and keep cosy where you are too!

maz x

Saturday, 24 October 2009

Coo & the Neuro...

Hi Guys, we saw Coo's Neurologist today.

He's a real nice guy and easy to talk to, anyway he asked Coo what he wants to do now as he still has 250-300 seizures a month and he feels things are not really any better.

Coo told him he doesn't want to try anymore drugs, I kinda understand how he feels as the last few meds have been disasterous.
He said his body is really feeling it and he's had enough of guiney-pigging for now.

Over the last few years he's gave a good try and then discarded loads of meds:
*Vigabatrin - was awful so very difficult to cope with as (in medical speak!) there were psychotic episodes and (in my speak) awful seizure activity!
*Lamictal - low mood, not eating and suicidal,
*Keppra - depression and rages and cut off emotionally.
*Zonegan - major seizure increase and hospital again.
To name a few, there have been many others too!

These drugs have really helped so many other people, I guess Coo's just been unlucky.

The neuro does say it's very unlikely he'll get much control as the Epilepsy seems to be drug resistant.
Reading this back, I do understand why Coo feels he's had enough for now.

Thankfully, after each meds change, given time, he's bounced back to his wee sunny self! I just wish, in the process, we'd found a drug which helped even a wee bit.

For now, he'll stick with the meds he currently has and the 2 weekly blood tests - upping and downing the doses as needed.
Who knows, things might still settle a bit.

The up-side is, Coo's feeling well!
He's sleepy and we're at home more to accomodate this but he's happier in himself and we are both really up-beat and managing things.
All in all we're both ok!
I hope whatever your situation, like us and these wee cheeky monkeys, you're in an up-beat place too!

Love and a smile,
maz x

Wednesday, 21 October 2009

Neuro time again...

Hi Guys, Coo has an appointment with the Neurologist again on Friday. It doesn't seem that long since we last saw him but it is...it's seven months ago!

I guess it's the same with most Carers, we just keep going, managing as best we can and time kinda runs away from us.

Coo's Neuro is a really nice guy and he does listen but what is there really to say?
I looked back here, at a post from when we last saw him in March and between that and the seizure diary we keep every day, it's clear there really isn't much improvement.

In the last seven months, we've added and dumped Zonegran - another AED (Anti Epilepsy Drug), we've constantly upped and downed doses of the existing meds and poor Coo's had blood tests done every two weeks and nothing much has really helped.

One good thing though, the frequent blood tests have worked as any infection or high/low drug levels have been found quickly so we've avoided any hospital admissions this year and for that we are both truly thankful!

You never know.
Maybe the Neuro will have something different to offer.

I'm valliantly trying to stay positive and hold onto sunny thoughts!

Wish us luck,
maz x

Tuesday, 13 October 2009

Carer's and isolation..

Hi guys, this latest enforced time at home has made me think about things.

It really is so very isolating at times for Carers and I'm lucky, I can get outside the four walls!
At the minute, with all the AED (Anti Epilepsy Drugs) hassles, we're having to do anything that needs done, between 12 and 3-ish as after that Coo really needs to sleep so we both need to be at home!

When I do have to spend a lot of time at home, usually 'cause Coo is poorly in bed or like now, when he's so tired from all the seizures it's so very difficult to keep him awake, I use a Carer Chatroom.
This gives me some much needed outside contact!

I know...I know what everyone say's about chatrooms!
This one is different!
It's at Carers.org, and it's regulated.

Best of all it has a friendly bunch of Carers in there chatting most evenings, offering advice and friendship.

If you are stuck at home a lot and need somebody on the outside to speak to, you could do a lot worse than give the online Carers sites a bash!
I have found them really friendly.

Happy chatting - maybe I'll see you there! LOL

Love,
maz x

Wednesday, 7 October 2009

That Drug See-Saw again...

Hi guys,
That dreaded drug see-saw, all these up'n'downs! it's more like a yo-yo at the minute! LOL
It's just as well we waited on the blood results before adjusting any meds!
Coo's AED (Anti Epilepsy Drug) has show a sharp dip and we can't account for it.

He doesn't have any of the usual suspects, you know the ones...cough, cold, temperature or virus so God only knows what's causing it this time!

I've contacted his E-Nurse for some advice but for the moment it's hard hat and flap jacket time again and just hope things either peak - the sniffles arrive or they begin to level out again.

Hear's hoping!

Other news...
I've recently been working with a couple of other Carers on a book of poems and verses and I'm so excited as we've had word it's going to be published soon!

Our local NHS Trust supported the project and helped us along and best of all...the booklets will be ready for the printers in the next week! wooo hooo!

The books are going out to Community Buildings, Carer Centres, Doctors Surgeries and Libraries so they'll be around and about!

Some of my poems have already been posted from time to time here on the blog but it'll be real nice to see them all together and in print!

I guess the roller coaster ride continues! LOL
It is nice to hear some good news though isn't it!

I hope you get some good news too!

maz x

Saturday, 3 October 2009

That Carers Roller Coaster ride...

Hi Guys, caring sure is a roller coaster for us isn't it!
All highs and lows, the problem is you never really know when they're going to hit.

We had such a good day on Wednesday (my birthday) and Coo was pretty much awake and ok, well...that would be the high then!
By Thursday evening it was a different ball game all together back to a sleepy and seizing struggle.
Honestly it really is so like a roller coaster ride sometimes.
His moods are all over the place and his sleep pattern is shot to bits...again.

I'm annoyed!
We turned up as planned on Friday, to get his blood tests done and the surgery had made a mistake with the day so...no doctor available and no blood tests done. Grrrr!

Problem is, Coo's been poorly over the last 3 nights and we could have done with knowing what his drug levels were so we could adjust the doses.

Due to their error, it will all have to wait - we can't risk reducing the AED (Anti Epilepsy Drug) doses until we know the test results.
Yet again...Grrrrrrr!

I'm beginning to sound like an old grizzly bear aren't I! LOL



I've re-booked the tests for Monday so hopefully things will go smoothly this time!

Let's hope he's back on the up again soon!


Thank God for our D.P. (Direct Payment), it's a looby night tomorrow night!

I sure could use some sleep!



I hope things are well with you and yours,
Love,
maz x

Wednesday, 30 September 2009

Birthday fun...

Hi guys - it's my Birthday today!

I've had a good day.
Our son and Coo went out last minute shopping so this meant I had the whole morning to myself!
I mooched around in my jammies, woke up slowly and just enjoyed the time out with a cuppa! LOL

When they got back they brought Looby with them and...presents - wooo hooo!

We had a cuppa while I opened them and for once all the hinting worked as Coo got me the smoothie maker I've had my eye on - result.

Thank goodness Looby went with them shopping as she brought an assortment of fruits to squish up! LOL

Well, it was like old times, you know, when your kids are little and they get something new and everybody's got to have a go straight away?

I had the smoothies going big style and we all tasted and tried with gusto!
Only difference was, this time, I was the little kid trying 'em out and egging them on! lol

Not sure about this one!
I think I'll give any green ones a miss! LOL



Lesson 1: in smoothie making - go easy on the bananas...
Lesson 2: in smoothie making - green 'aint a good colour choice!

After all that, this afternoon we all went out to lunch!

What a good day!

maz x

Saturday, 19 September 2009

Blackpool for Carer Respite?

Hi Guys...I'm back! LOL

Blackpool for Respite? YES!!!!
What a change!

The time away has done me the world of good - no offence to Coo! LOL

Mum and I shopped till we dropped, eat cream cakes, bounced on and off trams and had a date with Elvis! among others! LOL

We went to see the Rock Legends show at the Blackpool Tower Ballroom and it was
...totally brilliant!


I didn't know what to expect and I must admit, the acts were all excellent!
The Elvis guy looked mighty cute too!

So with the comfy beds, good food and bargains to be had on every corner I had a FAB time!

I guess that's why respite is so important!
I knew Coo was fine and I can totally trust Looby.
I did phone to speak to him each morning and then I could relax the rest of the day knowing he was fine.

This really meant I could have a hassle free break.
Thank God for our Direct Payment it really works so well for us!

My hope is all Carers can get a break and soon.
It's so very important.
Everyone needs a break, a chance to sleep and recharge their batteries!

Love,
maz x

Friday, 11 September 2009

This Carer's Respite choice...

Hi Guys, it's the time of year I get to disappear for a few days to shop till I drop, eat cake and sleeeeeeep for a week, well, nearly a week....yippeeeeeee! LOL

Using our Direct Payment, on Monday, Looby will come stay with Coo and...mum and I are off to Blackpool for a few days and I can't wait!
It usually takes me a few days to get used to sleeping through the night again and the last few days are bliss!
Maybe having the respite sleep nights regularly this last year, will make a difference and like this wee cat, I'll be able to...
...just automatically sleep right through - I do hope so!

We're going to the Royal Sea Bank Hotel which is central, it's on the prom and it has comfy beds - result! lol

Only 3 more sleeps as my kids used to say!
You think I'm just a tad excited???
Well, you'd be right! LOL

See you when I get back,

maz x

Sunday, 6 September 2009

The family arrive!

Hi Guys,
My sisters arrived for a flying visit this week!
My mum has been poorly recently - she's on the mend now and thank goodness as she's one of the main cogs in my support system and sorely needed at times!
Anyways, my two sisters and my neice flew up from Stansted - on a plane not bloomsticks! LOL
They arrived on Wednesday night and stayed till Saturday and it was great!
Coo was well, so we were able to go visiting and out to dinner too!

It's the first time we've all been together in years and felt really special.
I'm so glad they came as it's given both Coo and I a bit of a lift.

The weather here was it's usual - raining! LOL

When my sister phoned home, her husband told her his steaks were on the barbie...

We needed umbrella's and wellies at the time so there's no change there! lol

Never mind the weather, the three of them brought some warmth, sunny smiles and sparkle with them!

Now isn't that a cheery thought!

I hope there's some sunshine where you are.
Love,
maz x

Saturday, 29 August 2009

Caring easy?....Nooo sir-ee!

Hi guys, it's hard hat and flap-jacket time for us again!
We're back on the drug see-saw again - dose up and down trying to get some control!

Coo's Epanutin level (Anti Epilepsy Drug) has jumped from usually around the high end of safe at 80 to 108 for no apparent reason.
I'm not sure of anything that could have affected the levels as his white cells were fine so it's not infection this time. :?

I should have known there was a problem brewing as he's been a bit moody and his sleep pattern is shot to bits. Well, he sleeps a couple of hours at night and then on and off all day and with sleep seizures that's not a good set-up!

He's never really got back down to single figures since the last crisis and things have kinda stuck at around 12-15 seizures a day.

With this latest increase in activity, we've jumped back on that dreaded drug see-and cut back his dose in the hope things will settle a little bit.

Wish us luck,

Bob!
I'm gonna need to borrow that hat again !


I hope things are on a more even keel where you are!

maz x

Sunday, 23 August 2009

Quail, to get or not to get...

Hi guys, you may have noticed the quail related links I've added recently, well...I've been thinking of getting some quail!

Coo's not keen and that's the only thing that has stopped me taking the plunge...yet!
I have a petark in the garden it's this one:

I bought it a few years ago as I had two rabbits who needed a bit more space and sadly, it's been lying empty for over a year.


Well, I painted it a tasty chocolate colour and got it all ready, researched(properly!) how to keep quail and found a breeder not too far away so I thought I was home and dry on the quail front but not so!

The usually mild and easy going Coo has kinda scuppered the plans as he doesn't want me to get them!
It's so unlike him as usually he's a pretty much go-with-the-flow kinda guy but he seems to be digging his heels in this time.

I've always loved animals and over the 25 years we've been married we've had an assorment of pets from fish and budgies to rabbits and reptiles and our old Jack Russell (she's 17 now and still going strong!)

I guess, spending a lot of time at home makes pet keeping appealing - well it does for me anyway! LOL

I'm still working on Coo but something tells me it's not going to be so easy!
I wonder what he has against these pretty little birds??


***Aren't the pretty?



I'm still hopefull of changing his mind - wish me luck!

maz x

Friday, 21 August 2009

Getting involved with Carers UK...

Hi guys!

I'm considering joining the committee of Carers Scotland the scottish section of CarersUK.
I recieved a letter from them with details on voting for their new committee and after speaking to a friend, I'm considering joining the committee myself!

I guess I got the bug from the:
Carers Poverty Protest March in April
- check me out in the tartan and hi-vis fashion ensemble! LOL

Then again...maybe it was the T.V. interview in June for Carers Week! LOL
Who knows but what I do know is...

If you speak out for what you believe in, you feel better about things and if anyone else listens well, that's just a bonus isn't it!

Upwards and onwards eh
We all gotta fight for those who can't!

As it says in my header...

'We are all in the same boat so we each must take turns to paddle!'

I guess, maybe, it's just my turn at the oars!

A feeling kinda militant, maz! LOL xx

Friday, 14 August 2009

Caring sure is a roller coaster ride...

Hi guys, we've been on that flaming roller-coaster again!

Who ever said the life of a Carer was an easy one? eh?

Well, thankfully Coo's calming down a bit now but the last two weeks have been a real roller coaster ride!

He's been poorly this week but last week he was well, pretty much awake a lot, so he had less seizures - bonus! LOL

We even managed a daytrip with our wee club to the 'Highland Games' in Brodick.


Honestly all those kilts...
my - oh- my!

Can you tell?

I had a b-r-i-l-l-i-a-n-t time! LOL


So we watched the strong men literally!

Then walked along the beach and ate cream teas...mmmm lovely!

It's a pity the weather wasn't so nice but you can't have everything can you!

Things did clear up a bit later on.

The ferry ride home was magic, still waters and sunshiney skies!

Aren't we lucky!
It's such a fantastic view!


I sure hope you've got some sunshiney weather where you are!

If not, at least some sunny thoughts,

Love
Maz x

Wednesday, 29 July 2009

where's the last week gone...

Where's the last week gone?
Same place as the sunshine I'm afraid....God knows but it 'aint here! lol
Seems like both Coo and I have lost this week totally - Coo's slept it away...again and me?? well,

I've just kinda been hanging on in there and trying to chill and ride it all out yahoo style!

INTERNET Wooo Hooo or should that be Yahoo!!
If it weren't for my broadband I'm sure I'd be bored to tears, climbing the walls or both! lol

After all, there's only so many repeats of Tenko, Kojak or anything else a la UKGold you can view, before you're head gets sore!

It's been too wet to potter in the garden so this week, it's been a...


...cleaning and moving stuff around kinda gig - boring!


Just couldn't resist this pic! lol




We did manage to get out to our wee club (the one we run on Monday nights for adults with disabilities) and that always raises a smile!

Special needs bingo is not the easiest to keep up with and usually consists of me weaving around the tables and yelling well done! you've got that one!
or even...
2 little ducks??? 22 where are my quackers! answered by a lound chorus of quack,quacks and peals of laughter.

Who wouldn't have fun!
Especially as there's always some tea and buns to finish Mmm...Mmm

Coo and I need to feel the sun on our faces so let's ask the weather fairy for some lovely sunshine this week....pretty please!

maz x

Thursday, 23 July 2009

Well, the sun's back...

Hi guys, I'm glad to say after a weeks hard rain fall...the sun's out today!

I've been in the garden for a bit pottering around with plants and generally doing my charlie dimmock impression! lol

Coo's been poorly again, he sleeps most of the day and comes alive around tea-time.
It's been a bit of an adjustment again, what with seizures to cope with all night and then daytime too I'm feeling sleepy a lot!

I'm glad Looby's sleep over is soon!
It's on Saturday so I'm looking forward to a nights undisturbed sleep! BLISS!!

Anyways, enough of that and back to the gardening lark...

A few weeks ago I found a big packet of what could only be flower bulbs under the sink???
Well, what they were doing in there or how long they'd been there is anybody's guess but feeling kinda a guilty - it's only me who would have shoved them in there!, I decided to plant them and see if they'd grow!

...and grow they have! LOL

God know's what they are but they're getting pretty big and fat and have some pinkish flowers now appearing!


Result or what??

Now you've probably worked out I'm not usually the titchmarch type but I really have enjoyed pottering about in the garden this year!

It's thanks to the seizure alarms we now have, that I've managed to get out in the garden at all!
It's not so long ago I was shut in our room every time Coo was sleeping.

I'm not on commission - honest!
The alarms are brilliant.
I keep the handset with me and if Coo has a seizure it bleeps anywhere in the house or garden and I know he needs me.

They've given me a little bit of freedom back and that's not a little thing - it's hugely important!


It would be nice to have the sun back for a few days more.
I honestly think everything seems a bit brighter when the sun shines!



Let's hope for sunshine and smiles for us all!

Love,
maz x

Tuesday, 7 July 2009

where's the sun gone?

Ah well, I guess the bubble had to burst sometime - the sunshine's gone today and the rain is back with a vengeance!

I could have been doing with one of these outfits! lol

Well it was nice while it lasted and who knows maybe Mr Sunshine will be back! lol

Pardon the pun - every cloud has a silver lining and the upside is, Coo is feeling a bit better now the temperature has dipped a little so everyone's a winner on that front! LOL

Last nights wee club was brilliant, for those who don't know both Coo and I help run a wee group for adults with learning or physical disabilities.
Anyway, last night we had a colouring-in session and it was brilliant!

You forget how much FUN activities like that are when you've not done them for a while and it's great to have the excuse to step back in time for a bit and scribble away to your hearts content! LOL

First prize?? pick of the choccy biscuits and a medal - chocolate of course! lol

It is fun just to chill and switch off for a bit isn't it?
I guess it strengthens you up for the next on-slaught! LOL


I hope you've got your colouring pens and crayons at the ready where you are - go on you know you want to! LOL

Happy scribbling!

maz x

Friday, 19 June 2009

Carers Week 2009...

Well, haven't I been busy!

lol Last year for Carers Week, I met with Scotland's health secretary Nicola Sturgeon, to try and raise Carers issues and this year well....I was on the...


Cool or what? LOL

The reporters came to our home to film on Tuesday and it was all edited and on the news for Friday night!

Coo wasn't well enough to be filmed but in any case he wouldn't have been keen, he's a bit quieter than me!

I only hope sharing my story helps other Carers push for better services and a bit of help.

Here's hoping,
maz x

Wednesday, 10 June 2009

Sunshiney Days...

Hi guys! I'm back from Blackpool


The Central Travelodge is fantastic!!

and the weather?
Well...it was fantastic too! LOL

It was sunny every day so we walked on the beach, ate ice-cream and generally chilled out and it was GREAT! lol


Just look at the view from our room!

Cool or what!




We giggled like kids and had a real fun time and we both feel a benefit from that as Coo has been really poorly and we've both been stressed lately.

Anyways, another bonus...Coo wasn't too bad while we were away, mind you he was falling asleep by 8 o'clock every night - must have been the sea air!

We're pretty much shattered with the travelling but it sure was fun.

I'm so glad the sun stuck around as everything seems so much brighter when the sun shines doesn't it!

Of course, no visit to Blackpool is complete without a hurl on the trams! lol

We sure had fun!

maz x