Sending Rainbow's...

Hi all!

I always say about us Carers...

"We are all in the same boat so we each must take turns to paddle" - and it's true!

Must admit though, it seems like we've been paddling so hard over this last year and a bit, Coo and I, we could've been signed up as Olympic rowers!

Coo's still seizing pretty bad but not at an un-manageable level, the meds are still a bit of an issue though!
Gosh, it's weird how your perception of what you can cope with changes over time isn't it?

A few years back, I'd have said 10 seizures a week was too hot to handle but with all the crazy activity this last year, when it shot upto 30 a day, it's now a case of 10 seizes a day? that's...

Easy peasy lemon squeezy...well not quite, but you know what I mean!

I feel the sunshine is real nice but I guess you need some rain in your life too!





Please God keep sending me some rainbows!





*****Here's to rainbows for us all!*****

maz x

Old pics....

Aren't old Pics a bit of a pick-me-up?

I came across some photographs from a family holiday around 15 years ago and they brought back sooo many happy memories of my children and.....


*****Mickey!!

When we met him at the then Euro Disney - I wonder what year it was!
Anyone know when Disneyland Paris opened?

Coo looked so healthy and happy too, we had such a happy time there.

By the looks of them, my kids are around 10 & 6 as opposed to 24 and 20...Gosh that makes me feel my age! but then again, I had them very young!

Coo and I spent a good, happy hour going through them all.

We must dig out some more as it sure did us both no end of good!

maz x

Ouch...Ortho...What??

Hi all, I've been having some problems with my shoulder this past year and saw the Physio for some sessions, see...
***** Ouch not again! *****
Unfortunatly after a few months of squeezing, poking and proding the deal is....
Sorry, it's not working go back to your Doctor....well, alrighty then!

Our G.P. says don't bother coming in, I know what it's like so I'll just refer you to an Orthopaedic.
They'll be in touch, well cheers!

Nobody has ever mentioned surgery and I'm pretty sure I'd have remembered THAT bit, don't you think?

I guess it'll be a case of keep taking the painkillers and slapping on the TENS machine...eh?


Must admit, they do ease the pain somewhat but I'm not so sure about the woosy feeling that comes with them too.

Being a Tee-totaller, I wouldn't know but at a guess, maybe this is how drunk people feel!

Maybe I'll just pass on the pills and keep zapping away!

Thank Goodness Coo's still feeling Hunky-Dory at the moment and I suppose, looking on the bright side at least I'll avoid any more painful Physio sessions for the time being anyway!

maz x

On the up....

Hi all, Coo's still on the up thankfully!

He seems to be gaining strength day by day, who knows where it'll end LOL!

It's been really nice today and I persuaded him to come out in the garden with a cuppa for a wee while and yesterday for the first time in over a month, he agreed to come to work with me!

We kinda got a system going there!


I work in the local Community Centre so while I hold my information surgery...
Coo plays a game of pool with the Caretaker!


Obviously this last month he's not been able to accompany me and Looby's been draghted in to keep an eye on things while I got to work, but yesterday...well, it was all systems GO!

Thank goodness for that,

Maz x

Coo improves...

Hi, the sun has come out at last and things seem a bit brighter today!

Coo's reduced dose of the new drug has helped, he's not so distant or closed into his shell today.
I'm glad for this glimmer of his old-self coming through as I've found the last month very difficult at times.

We began reducing the meds on Tuesday night, yesterday his depression began to lift and more importantly he's picked up his guitar.

I'm so relieved, he seems to be on his way back up again!

His seizures have taken a nose-dive but that's only to be expected with the meds changes, I'm just glad he's ok.


An improvement in things and a sunshiney day too, what more could I ask for?

Hope things are as sunny with you!

maz x

Drug see-saw again...

Hi everyone, after all the issues and difficulties adding this drug into Coo's system, it looks like it's gonna have to come right back out again!

Coo's blood results, show a further hike and there's now no way to control the level of the different drugs in his blood-stream.

Too little he seizes into oblivion all day, everyday, and too much well...ditto.
That's the dreaded drug see-saw effect!

He did avoid some of the nasty side effects but a month into the trial, he's suffering severe Flu symptoms, chills, cough, the works and continual nausea, his appetite is nil so he won't eat anything much and to cap it all he has now developed depression!

We're waiting for a specialist nurse to contact us tomorrow but Coo feels his quality of life has diminished so much, that any gains are far out-weighed by unbearable side effects.
Coo says the feelings of desperation, sadness and lethargy are as awful as when he had pneumonia and was struggling with 30 seizures a day!

It's been a very stressful experience but we had to try as it's a new drug and gave us just a little bit of hope!

Gosh it's never easy is it?

Don't you sometimes feel, everything comes at a price or is that just a tad cynical?

Let's hope for better times.

Take care friends,

maz x

The new drug see-saw...

Well, we began putting the new drug in 2 weeks ago and so far we've avoided all the major nasty side-effects - thankfully no crazy 'hissy-fits' to report...yet!

On Tuesday, it went up to the high dose of 1000mgs a day but Coo's been having some problems since.
He sleeps around the clock and does not have any energy to go out etc.
He's also lost his appetite which is not so bad if your 18-20 stone but not good if your only around 10 stone to begin with!

The new drug was not supposed to re-act with any of his other meds but I think it has!
His drug level for the other epilepsy med, is now through the roof.
The safe dose is between 40 and 80 and today the reading is 109 - it's never been so high before!!

So, guess what??

We've begun the dreaded sea-saw effect yet again today!

Here we go!

Up 'n' down and up 'n' down!

We're reducing one med for two weeks and then we'll check the bloods again and plan some action!!

Nothings ever easy is it?

I hope life's treating you kind where you are!

maz x