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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