Coo's on the up...

Hi Guys, I'm please to report Coo is back on the up...thank goodness for that! LOL
He's not brilliant but he's a whole lot better than he was and that's the main thing!

It's funny, when things are really stressed and the care role is so intense you kinda go onto auto-pilot a bit - well at least I do and I suspect I'm not alone in that. It's only as things settle a bit, you realise how heavy going the whole thing has been...does that make any sense?

I'm just glad the last few days are over and hoping Coo stay's on a more even keel...well, even for him! LOL
Honestly there was a time when I couldn't have contemplated coping with so many seizures, I thought ten a day was a real handful then!
Now?
Ten a day's a doddle, in fact that's probably a good day!
I guess being a Carer makes you more resilient, somehow you just manage and find a way forward!

Incidently, I did get my much needed time out yesterday so I shopped till I dropped and stopped for lunch with my mum and best of all to finish up - it was a Looby night!



So just like these two wee babies there was some sleep for me too! Woo hoo!


I don't know how I'd manage now without those precious 2 nights sleep, they make such a difference. Today I'm doing ok, after yesterdays lovely timeout, I've woken up all refreshed and new and ready to start again! LOL

I hope, where you are, you're doing ok too!

maz x

Paddling that Carer boat hard...

Hi Guys, I don't know what exactly is wrong with Coo's meds but I only know he's no better. This week, we've been struggling or as I like to put it paddling our boat hard!
I'm ok, tired but ok and Coo?
Well, for a couple of hours in the morning he's pretty good but then he crashes and burns and the seizures begin.

It's a few months since I had to call the emergency doctors and tonight was the night! Coo began to seize every 10 minutes from 9:30 till quarter passed 11 and I was getting a bit anxious!
I always hate the vomitting seizures when they make an appearance,for some reason they bother me more than any other and I'm not really sure why, I think it's all the noise and choking they bring.

On the upside, we're seeing Coo's neuro in a few weeks so if our Doctor can keep a lid on things till then I'm sure we'll be fine!

I've a feeling it'll be a long night!

Never mind, Looby's coming tomorrow and I'll be footloose and fancy free for a bit - (shopping and lunch with my mum)! LOL

Let's hope the rain stays off for us and if not...at least he could send us a nice rainbow, they always bring on a smile and make things feel brighter!

Incidently the snow's back here so those snow boots have been dug out again, I've certainly had my money's worth! LOL

Keep dry, snug and cosy where you are!

maz x

That AED see-saw...

Hi Guys, we're back on the AED (Anti Epilepsy Drug) see-saw right enough!

We got Coo's blood results yesterday and they're not good. It seems his levels have dropped once again for no apparent reason.

The safe range is between 10 and 20 but Coo does best on or just above the safe range at around 20-22.
This week? well, his level dropped right down to 14 so it's no wonder he's running amok with crazy seizure activity.
Our Doctor phoned to discuss things and we've agreed once again to up the meds in an attempt to stabalise things - poor Coo he just can't seem to catch a break!

I hope the higher dose kicks in soon as his seizure level is ever spiralling upwards and we're both shattered.

In other news...

Looby had a wobble about the up and coming wedding, (cold feet I think it's called!) but a few days on, once again everything's rosie on the bridal path - Ah young love! LOL

Seems we are all in need of some sunshine at the moment so roll on the spring!
I think grey days make for even greyer moods don't you?

Let's all hope it's a bit brighter tomorrow!

Love,
maz x

Carers still paddling hard...

Hi guys!
I always say: we Carers are all in the same boat so we each must take turns to paddle and we've been paddling hard these last two weeks as Coo's still poorly!
He was well enough to go get his bloods done on Friday so hopefully we'll find out tomorrow just exactly what level his AED's (Anti Epilepsy Drugs) are sitting at!

Thank God for the Seizure alarms as without them, I'd be back stuck in my bedroom. At least with their help, I can move around the house freely as they always let me know when Coo needs me and this saves me going totally stir crazy! LOL

I must admit to feeling it's been a long winter, I can't wait till the better weather comes and I can sit in the garden come what may!

It's funny but when things are a bit difficult and I'm stuck in at home for a while, it really gives me some thinking time, I'm not sure if that's a good thing or not! LOL
Taking time out, does help me evaluate, see things clearly and count my blessings so maybe it's not such a bad thing after all!

I honestly feel Caring is a bit like the juggler with all those balls up in the air at the same time.
It's probably the same for all Carers! We constantly rush around, trying to keep all the balls going - you know the balls I mean! - Caring, work, home, kids, family and finances to name a few!

Maybe it's good to call a timeout once in a while and just let some of 'em drop - it's probably good for the sanity if nothing else! LOL
Only problem is you gotta re-group, pick 'em all up and start juggling again or at the very least...learn a new trick!

So here's to all those out there who are juggling!
Love,
maz x

That Carer Roller-coaster...

Hi Guys, that Carer Roller-coaster strikes again!
After all the happy thoughts surrounding Looby's wedding plans we've hit the earth with a bump...
Coo is very poorly again.
His seizures are lasting twice as long and they're coming thick and fast. Last night there was another run of seizures at 20 minute intervals so we're both a bit shattered today...well you can imagine!

So what do we do on days like these?
Well, Coo's slept and seized on and off all day so we've been at home.

Thank God for the Internet and when he's awake and lucid...old movies!
We cuddled up and settled on the sofa to watched a classic old black and white movie and just went with the flow!


He's a little brighter now so hopefully things will be a bit better tonight either way we'll cope!

I hope things are a little more settled where you are.

Love,
maz x

Good news...

We have some good news to share...Looby's getting married!

Looby and her fiance Steven, have been together for a couple of years now and have decided the time's right for a wedding!
They've set a date in December.
Coo was a bit surprised as he still see's her as his wee girl even though she's 22! so I had to whisper a gentle reminder, we were both in our teens when we wed 25 years ago so we best just keep quiet about the age thing! LOL

Steven is a lovely guy, he's in the Scots Guards, he's very mellow and easy going and this compliments Looby's blonde, harum scarem, smiley nature.

I think they're a good match so I'm pleased there'll be some wedding bells!
I've never been the mother of the bride before - I'll need a hat! LOL
Now, I guess the hunt is on for, well, everything associated with weddings so...let the games begin! LOL

maz x

Carer Poems...

Hi guys, I mentioned in my 2009 relection post, I'd had my poems published with funding from the N.H.S.
More information here, it's to help find hidden Carers and encourage them to seek out some help and support any way they can!
Here's one of my poems from the booklet and it's kinda apt that it's here on a web blog as it's about Carers supporting each other on the Internet!


Carers Connect…

I am a Carer and someone’s wife,
The person I care for still shares my life.
We’ve been through the wars my loved one and me,
It seems such a long time so far back to see.

When first you’re caring it’s all raw and new,
lots of appointments and hospitals too.
In early days you still hope for a cure,
but as time keeps going hopes get fewer and fewer.

Pills and potions giving anything a try,
therapies and treatments to help you get by.
Nothing is working and time still goes on,
Keep struggling and striving into each dawn.

When meeting friends who in years you’ve not saw,
They ask how things are but talking is raw.
They can’t understand and what support can they show,
of an lifestyle we hope they won’t ever need to know.

Information is power, we all need to know,
best ways of coping, for help where to go.
‘Selfish Pigs Guide’* is a good book I read,
it changed me completely, the things that it said.

It told about Carers, people like me,
millions all out there, why couldn’t I see…
I’m not on my own, lots of Carers I’ve met,
They chat and connect via the Internet.

It takes some time to build confidence too,
And state, I’m a Carer’ and that’s what I do.
It’s not who I am but it is a big part.
Carers keep caring body, soul and heart.

*The Selfish Pigs Guide to Caring is written by Hugh Marriott It's a wonderful book if you're new or even not so new to caring.
I hope you get a chance to read it or borrow it from the local library, honestly it's so worth the effort!

maz x