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Tuesday, 31 March 2009

To sleep or not to sleep...

Hi guys,

The dregs of Coos latest trial with new pills are still kicking about his system, well I think they are anyway!
He still has difficulty sleeping so he seizes practically non-stop from around midnight till 3-ish and pings awake at 4 in the morning!

That's bad enough but he's then shattered by lunch time and in need of more sleep - so the cycle continues.

Honestly I don't know about him but I'm starting to feel like Zebedee - remember him?
Bouncing up-n-down all the time.

Come to think of it, it's probably a pretty fair assessment.
I guess we do, pretty much have, a 'zebedee' lifestyle! lol
I'm just glad there's usually as many ups as there are downs!

Anyways, enough of that...

Bargain City!

My cheap as chips Travelodge visits are still on a roll! LOL

In January we visited Glasgow for a few days to celebrate Coo's birthday and it was great.
We did the museums and a little shopping ;-) and chilled out for a bit!

Well this time, I've mananged to get another cheapy deal for a few days away in June to...Blackpool yeh!!
It's central as it's based in Talbot Road, just around the corner from the tower and at ₤19.00 a night for a room, well, you can't beat it! LOL

Mmmm, wonder where we'll end up next!

maz x

Thursday, 26 March 2009

Carers? we will Survive yeh yeh...

Hi guys!

Looby couldn't make it last night, she had to work her other job (in a local care home) at short notice so no sleep for me last night...1-2-3 awwwww!
In the words of Gloria Gaynor I will survive!lol

As one door closes another one opens right enough!

Enter Scooby (our son) he's recently taken up golf so he's taken Coo out to the driving range for a bit and me....well I curled up had a sleep and read a bit of my book so job's a good 'un!

I'm so glad we've family who will lend a hand and in a practical way!

No doubt Coo will come back shattered and most probably sleep the rest of the day but hey it'll have been worth it, fresh air, the sun on his face and a bit of exercise can only help!

Our two kids have grown now and however much you try to shield them from the disabilities and issues when they're little, it's impossible to totally cushion them.
Considering even with the usual teen hassles they've both grown into caring people, maybe that's not such a bad thing after all!

Looking back now, what is it they say - hind sight is always 20/20 vision, I think all that angst and guilt I felt while tied up caring for Coo, was probably a waste of time and I bet lot's of other Carers have unnecessarily taken that guilt trip.

They turned out just fine so in the midst of us muddleing along we must have got something right - thank God for that! LOL

This pic gave me a giggle!

Isn't it so much more brighter and positive when the sun pays a visit!

Happy thoughts,
maz x

Wednesday, 25 March 2009

On the up...

Hi guys!

I think Coo's back on the up!
The last two weeks have been a bit of a challenge - maybe the best way to put it! lol

The new drug did not work.
It's now slowly leaving his system and thankfully I'm getting my Coo back again.
Epilepsy drugs are always a bit of a trial and error process, sometimes you gain and unfortunately sometimes you just don't.
The trouble is, if you don't try 'em you'll never know if they'd have been 'the one'.

Yes! Coo's definately on the way up again!

Last week, he couldn't concentrate long enough to string a sentence together and could have banged his favourite guitar on the floor and danced on it and this week...

sweet music or not so sweet depending your taste! - is back! LOL

I'm so releived as when any meds are either going in or out of his system, it can be such a worry, all the side effects and adjustments and then if they don't work all the frustration and hassles of then dumping the drug too.

I'm happy things are settling and even the weather is a bit brighter today so that's a bonus too!
If it lasts, maybe we'll get out to the park tomorrow and go squirrel spotting and of course...cream cake eating too! LOL

So all together...

Sunshine, lollypops and rainbows - you know you wanna sing! LOL

maz x

Monday, 16 March 2009

Poem: Carers and Flowers...

Hi guys, another of my poems with all the hassles over the last few week I've been in a bit of a pensive mood...

‘Caring Flowers’

The strong flower in some,
strives to reach for the sun,
to push for the best of funding and rest.
While timid souls stop in shock and ask why?
all their precious petals just curl up and die.

Carers nurture another, a wife or a brother,
some friend, maybe neighbour or kin.
They struggle and care,
On a wing and a prayer,
no support, for the Carer within.

So hard to understand,
the deal of this hand.
So easy to find,
your in such demand.
An accident or illness is all that it takes
And just like most Carers, your life hits the breaks.

To let Carers flower,
We need to empower.
To help them continue their role,
In safety and comfort,
with less of a struggle,
that should be our far reaching goal.

Don’t sit on the side,
And this issue hide.
We all need some kindness
And support, it’s so true.
Look closely at Carers,
It so could be you.

We Carers need to remember to keep carefully tending the flowers in our own soul too!

Take care of you!
maz x

It's never easy is it...

Hi guys!
Being a Carer is never easy, sometimes it seems there's more ups-n-downs than a roller coaster ride!

You may well ask how the new drug coo started last week (zonegran) is doing...
Well, it has made things a whole lot worse for him.

His seizures are real bad and he's suffering awful side effects too he can't eat or sleep and in his own words has 'the concentration span of a goldfish'.

We've been advised to dump the drug so the trial is officially over!

Hopefully things will improve a little and at least poor coo will be able to eat something soon.

We had to try it or we'd have been left wondering if that drug could have been the one to help - sadly not this time I'm afraid.
So we're dusting ourselves off and re-grouping so hopefully we can hang up those hard hats and flap jackets again!

On a lighter note, last week our wee disabled adult club had their bi-monthly karaoke night.

In the rush to get out, I'd forgotten my glasses and was a bit annoyed at first till I discovered special needs karaoke is in a league of it's own!
You just make up your own words and go with the flow so I didn't need them after all!

Incidently we only have karaoke every 2 months as we need to psyc ouselves up for the racket of the 'TALENTED' singing it produces.

Ok they 'aint Lily Allen or Tina Turner even if they do think they're 'simply the best' ! LOL

It's all good fun and that's the important thing isn't it! LOL

Keep smiling and a song in your heart! LOL

maz x

Friday, 6 March 2009

The Neuro and the drug see-saw...

That dreaded drug see-saw I've mentioned before has just got a little bit more complicated!
I think it could be hard hat and flap-jacket time yet again...

Coo's meds are a fine balancing act, too much in the blood stream and it's toxic - too little and it's seizure city - the up-n-down see-saw effect!

He saw his Neurologist today and firstly I must say; he's a real nice guy, always takes time to speak to Coo and explain the options - little as they are!

It looks like he's going to add in yet another anti-convulsant to the mix, making a cocktail of 3 AED's now(Anti Epilepsy Drugs).
I've been on the National Epilepsy website for some info. on the new drug - zonegran.

Yet again the side effects are a bit of a scare but we'll not worry about that just yet - he surely can't be that unlucky again as introducing Keppra was a nightmare!

Coo's neuro says it's worth a try as his seizure level is still way too high.
We last added a new drug a year ago and it's not really dented things - he still has between 250 and 300 seizures a month.

God, when you write it down is sounds such a lot!
Nobody ever said the life of a Carer is easy but I think Coo's got the fuzzy end of the lollypop!
We'll begin the new drug on Sunday and just see where it takes us!

Positive vibes, and...

Lucky white heather at the ready!

maz x

Wednesday, 4 March 2009

My Carer Protest Poem...

The fight goes on...

I'm involved with the group trying to get some justice and support for Carers.
We're marching on both parliaments in London and Edinburgh on April 22nd.

There's more information here too - we've been busy! LOL

Our march and rally is really to raise awareness of Carer issues, the low level of Carer Allowance and the fact that once you reach pension age, you will continue caring probably until your own health fails or you drop but our government says your a pensioner now so you no longer qualify for Carers Allowance anymore!

Now where's the justice in that?

Another issue we're protesting about is the lack of services and respite to enable Carers to continue in such a difficult caring role long term.

So to aid the cause I've penned a poem.
I've given permission for someone else to read it on my behalf in London as I will be reading it in Edinburgh at practically the same time and I haven't mastered being in two places at once...yet! LOL

Here's a sneaky peek...

‘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 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 kinda covers all that I want to say.

If you can't make the march please sign the petition as every name counts!

We all must stand together.

Let's hope for some sunshine, lolly pops and rainbowns!

A positive thinking,
maz x