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

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!

Love,
maz x

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 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 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

Our Care Club...

You'd think me as a Carer and Coo with his own health problems, the last thing we'd need would be coping with more disabilities...not so!

For those who haven't visited before both Coo and I help run a wee club once a week for people with either learning or physical disabilities and it's great fun.

From days out, domino and pool competitions to just about anything really we'll give it a bash!

This week, I decided instead of buying biscuits for the tea break we'd have a change and russell up something a la delia instead...

I dug in the cupboard for a pot of jam, some biccys and icing sugar that would just hit the spot nicely!

Well, in between printing out some certificates for the pool comp and sorting some beads for earing making the deed was done.
Mind you we were all sticky and so were the tables but the empire biscuits turned out brilliantly!

Glad I don't need to diet as who knows how many calories in that little lot! LOL

Roll on next week, maybe we'll do chocolate crispies.
Now doesn't this put you in the notion for some...


Mmmmmmmmmmm!

Chocs away!
maz x

Anniversary....

Hi guys, this week was Coo and I's silver wedding.

It doesn't seem like we've been married 25 years I guess time just has a habit of rolling on! lol
I keep saying it's because we married young!
I sure don't feel like an old lady yet! LOL

Coo was well enough to go out for a bit and for once the weather behaved so we went to the park.

It was just so relaxing wandering in the park, kicking up the leaves and after that...well....

Cream Teas!


Mmmmmmmmmm!

Later on our family came visiting with smiles, gifts and good wishes.

It was a real pleasant day.

It makes me smile to know after all this time we are both still so close...

Says it all really.....

Still the one!

Smiles and sunshiney thoughts,

Love
maz x

At last, the Carers curse is improving...

Hi guys, the dreaded shouilder pain that seems to be a problem for most Carers has been sorted!
Well, it's well on the way and at last starting to go!


I won't be sad to see the end of these...

Three years, nine Hydrocortizone jabs and some physio later...
I can honestly say I've turned a corner - thank God!

My shoulder pain is now much less than it was and what a difference in the movement!
I don't have tears in my eyes trying to brush my hair or put on a jumper and that's great!


I've 4 weeks of physotherapy and then a follow-up with the surgeon - whom I could kiss!


Not my pic I hasten to add - my glasses are more trendy!! LOL

Seriously, I'm really pleased with the progress just a week on, it's far greater than my expectations!

Coo's bloods for this week: well that's looking a bit more positive too, at 82 he's just outside the safe range but it's much better than it was.
I'm hopeful things will settle a bit.

Seems like everything's looking a whole lot brighter than they did a few short weeks ago let's hope it's catching and we Carers all find some improvements!

Bestest Wishes from a cheery, almost pain free and hopefully new improved!

maz x

That Drug see-saw again...

Hi guys,we're on theat dreaded see-saw!

Coos blood test was dire on Tuesday his meds are too high...again!

The safe dose is between 40 and 80 and last time Coo's level was reading at 93!
Our G.P. wanted him to reduce his meds but he thought as he was already seizing too much he'd hold out hoping things would settle...they haven't.

This week his bloods showed another hike to 97 so our G.P. asked him again to reduce his dose.

Well...this week has been a bit dire.


At it's worst point on Thursday night, Coo was seizing every 20 minutes from midnight until 5-ish and we were both pretty much shattered!



It's been DVD's and duvets the last few days, I think things are settling a bit now thank goodness as we're back around the 10 a day mark!


Maybe tomorrow the rainy weather will be gone and we'll get out for a bit!


Here's hoping for some rainbows!


maz x