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Monday, 25 June 2007

seizures and booze don't mix...

We had a family wedding last weekend it was a great day and all went well till we got home.
Coo had some alcohol, he doesn't usually drink any as it affects his epilepsy but at the wedding he had a few beers and boy are we suffering!

We got to sleep at 1 a.m. but we didn't sleep for long as Coo's seizures were coming around every 15 minutes by 5 a.m. he'd had 15 seizures and we were both shattered.

All today his moods have been erratic and to be honest my patience is wearing pretty thin.
Looby's arrived to keep an eye on things so I'm going to sleep for a bit and hopefully when I wake I'll be feeling more positive.

maz x

Wednesday, 20 June 2007

Tai Chi for Carers...

Hi, I'm eternally greatful to our local Carers Centre, who ran a Tai Chi course last year as it's honestly the best de-stressing pastime I've ever found!

Today has been pretty stressful!
Coo's not too well today, there's been lots of seizures and I've started to feel the tiredness coming on.
I've popped on my panpipe music, summond up enough energy for a 10 minute burst of Tai Chi and now I'm feeling great!

I wouldn't have believed it would work this way but it does honestly balance you all out again...really!
I tend to use it when I'm tired and there's no way I can take timeout for a sleep or when I'm stressed and things are getting a bit too much.

Tai Chi chills me out a bit and makes things seem a whole lot brighter!

Try it out yourself, it sure keeps me sane at times!

maz x

Tuesday, 19 June 2007

Carers' Week is over...

With Carers' Week all over for another year, it's time for looking back over things.
Last year, Coo was a bit better than now, but I didn't have much in the way of help & support.
This time he's not so well but we've made the change to get in some 'Care Services' to help us at home.

Our Direct Payment let's us employ Looby (our daughter) flexibly for 28 hours a week and this has made things a whole lot easier.
Things like, if I couldn't find my phone I couldn't go out, as I needed to be continually calling home checking on Coo.
I also had my parents on standby to go help in a hurry if I called them up!

This new way is better for everyone, I can plan when I want to do things and know it will happen rather than be disappointed at the last minute as Coo isn't well enough to leave.
I've been able to go to the Carers Week events with a clear concience which is a new experience, days out with no guilt!
Looby's able to fit around the hours we need her and best of all, I now know when I will have a full nights sleep, previously I just kinda drifted in hope that at some point I'd get some rest.

Looking back I don't know how I managed but having had some regular sleep a few nights a week, I know I was starting to get burn out!
Things are more calmer at home, not that it was bedlam before! but I find myself smiling more and little things don't seem to bother me so much.

For Carers, lack of sleep is more of a problem than I realised, it's just, when you're in a care crisis with not much sleep for a long time, it kinda becomes normal and it's only when the cycle is broken you realise how bad it really was!
I hope anyone considering using Direct Payment finds my experiences helpful!

maz x

Sunday, 17 June 2007

Sunshiney Day...

Well, the sun's shinning today for Fathers Day!

My usual Sunday routine is going to church with my parents, my mum has gone away on retreat to Lourdes, France so it was just Dad and I today.

It was nice to spend some time just talking and having a cuppa afterwards!

My Mum's home on Wednesday so it'll be all gossip and chat about France!

It was a nice surprise to have sunshiney weather today as over the last few days it's been dull, overcast, rainy and COLD!
What a month June is turning into this year!

I'm glad it's nice today things don't seem so bad, sunshine's still free and makes everyone want to smile more, well it sure works for me!

I hope the sun stays awhile, well a few more days anyway!

maz x

Friday, 15 June 2007

Carers Allowance and bills....

Carer's Allowance sure doesn't go far, it certainly never lasts a full week, well not for me anyway!

I mean, what can you buy for £48.65...not much!

This week, the money seems to have bounced into my bank account and straight back out again in bills.
I hate when they all come in at once, the phone bill is high as it covers Coo's recent hospital stay, the call rates are soooo high you wouldn't believe!

I'm glad Carer's week was so enjoyable as I don't think I'll be doing much else until our funds even out again!

I guess that trip to the Bahamas' is off yet again, at this rate I'd be pushing it aiming for a trip to Blackpool!!

A well all good things come to an end and it sure was fun while it lasted!

maz x

Thursday, 14 June 2007

Carer's on the move...

Hi, as part of the Carer's Week celebration our group went on a fun walk.
There were 15 of us and the walk was around a private estate along both a beach and woodland area, very pretty but also pretty muddy at points!

I was worried as the walk was going to last for around an hour and the furthest I've walked in months is from the carpark to the shops and back!
I needn't have worried with all the chat and laughing that comes along with fresh air and 15 women, the time passed really quickly and I didn't notice I'd been walking so long!

We finished up at a large 'Garden Centre' for tea, sandwiches and scones, and on the way home...well, I treated myself to a mint choc chip ice-cream, something I hadn't had in years.

What a pleasant day!

Looby was home with Coo, so I really had a hassle free day for once!

maz x

Monday, 11 June 2007

Laughter is the best medicine...

This week is Carers Week and there's lots of activities on offer here!
Normally I don't have the chance to get involved but with Looby to P.A. for us, this year will be different!

Today, well, I've had a massage in the morning, learned how to make some tast sandwich fillings and had them for lunch!

In the afternoon?

It's a....A laughter workshop!

In the end it was a lotta fun, but at the beginning, when a lady turned up dressed as a clown with a box of dress-up wigs under her arm I wasn't too sure!
Within 15 minutes we were singing, dancing and clapping all with silly wigs on top to boot!
We must have looked a sight!

I needed a laugh, it's been a pretty tough week, the weather's been hot here and both Coo and me are real sleepy, not a good thing when you have sleep seizures!

Incidently Coo got back from the dreaded Stag night ok, he had a little alcohol and seemed fine!

So I was all in a tizzy for nothing!

maz x

Saturday, 9 June 2007

Coo's big night out...

I'm a bit worried, Coo's going to a stag night for a family member tonight.
It's the first time he's been out without me in at the very least a year and with the increased meds starting only yesterday, I'm a bit worried!

My son and nephew will be there so I'm sure if Coo begins to get sleepy and there's any danger of a seizure, they'll phone me to get him home.

I feel a bit like a control freak but really, I think it's the circumstances that put you in that position where you have to manage practically everything and stay one step ahead.
I guess years of caring and responsibility does that to us all.

I'm trying hard to play things down, I haven't 'told' anyone to watch him but I know they will anyway!
I'll probably be like a cat on a hot tin roof till be's back home safe and sound!

maz x

Friday, 8 June 2007

Looby stays over...

Looby's our daughter and she's also our P.A. which makes her a bit of a Godsend!
We employ her using a Direct Payment scheme from Social services.

I was ever so glad it was a Looby sleepover night last night as I was really feeling tired yesterday!
It does have a tendence to sneak up and catch you unawares as you just don't realise how tired you are and all of a sudden - wham it hits hard and knocks you for six!

When Looby stays over those two nights a week it gives me a chance to recharge my batteries for the next onslaught.
I now wonder how I ever managed all week with practically no sleep at all and I'm truly glad those days are gone!

Guess what?

It's been sunny here again today! unusual to have a few days in a row without any rain and as if it wasn't bad enough, I think the hotter weather's making me sleepy too.

Never mind in our climate, odds are it'll rain soon anyway!

maz x

Thursday, 7 June 2007

The A.E.D. see-saw effect...

Anyone with Epilepsy or their Carer for that matter! will know it's a fine line between an effective drug level to help with seizures and going 'toxic' with too much Anti Epilepsy drug (A.E.D.), in the blood stream.

Well, we're in the middle of a see-saw crisis!
Four weeks ago Coo's blood test showed the level was too high, so we agreed to reduce the dose and now it's too low to help him combat the seizures!
We have to choose, leave it low and have more seizures than he already has (10 a night) or hike it back up 25 mgs and risk going toxic again, what a choice!

I asked Looby & Scooby, our son and daughter if they had noticed any changes in behaviour or seizure levels in the last week as this was when his drug level seems to have fallen.
They're answers 'hell yes!' & 'All week he's been Mr Grumpy again!'

Looking back at things, the seizures have been more intense and his moods have been a bit erratic too but we didn't connect this change with the drug levels until our Doctor phoned and said things were lower than usual.

We will probably need some hard hats and flap jackets for the next week but we've discussed things and decided to up the dose and see if his moods settle again.
At least we'll know once and for all if a low drug level makes him into 'Mr Grumpy'!

Watch this space!
maz x

Wednesday, 6 June 2007

A Sunny Day, makes it ok...

It's a sunshiny day!

I've been awake on and of all night coping with seizures and eventually gave up on sleep to watch the sun.
We don't see nearly enough sun on the not always so sunny coast of scotland but today's the day!
Morning's usually quiet here!

After all the seizure activity overnight, it makes a pleasant change to sit with a cuppa and chill for a bit.
With a bit of luck, the seizure alarm won't ring out until I've drained the cup!

I'm glad it'll soon be a Looby (our daughter & Personal Assistant) sleep over night as after last night, I'm looking forward to sleeping!

The life of a carer - it's still morning and I'm already thinking of sleep!

maz x

Tuesday, 5 June 2007

Direct Payment, us & Looby...

I care for my husband Coo, who has Nocturnal Epilepsy (sleep seizures).
Coo's had them for 30 years and we've been married for 23 of 'em so it's not exactly a new experience for either of us!

Nobody sleeps much in our house!

In December 2006 we asked for help with Care from our local Social Services as it was all getting a bit much.
We'd had months coping with 30 seizures a night and we were struggling!
We looked at how things were and realised I hadn't had an uninterupted nights sleep since 1993, over 14 years ago!
We wanted to apply for a Direct Payment as this would let us buy in our own care,to let me get some sleep.
We found out using a Direct Payment, you could employ a member of your family or someone you know to help with Care needs.
We had never thought of using Social Services in this way before as Coo, would not accept external Carer workers.
During seizures, Coo needs someone familiar and couldn't cope with someone he didn't know...


Looby's our 19 year old daughter, she does not stay at home anymore, knew we were struggling with care and was prepared to move back 2 nights a week to let me have a bit of a break.
Our Social Worker was supportive and helped us sort the Care stuff.
After the initial assessments in December it took 5 months in total to set up.

Looby is now officially employed as a P.A. with us!
Coo's ok with things as he and Looby are close.
I can sleep safe in the knowledge, Looby knows exactly how to handle the seizure activity, limb jerking, running around, banging into stuff and the rest...
I can trust Looby to wake me if things are worse than usually.
Looby's cool too as she's only working part time at the minute and it's not too much of a strain, and also she's earning too!

Best of all, I now get to sleep for 2 whole nights a week...Bliss!

I'm finding things a lot less of a strain.
I didn't realise just how tired out I was, until I'd gotten some more sleep and I find I'm looking forward more and more to my sleep nights!
I now know, however bad it gets, at some point in the next few days I will be able to sleep but before the Direct Payment kicked in, I never knew from one week to the next when I would be able to rest.
I'm now feeling more positive about things.

Long may it continue!

maz x

Monday, 4 June 2007


The Carers war cry??....Sleep, sleep and yet again....sleep!

Coo has had Nocturnal Epilepsy (sleep seizures) for 30 years.
We've been married for 23 of 'em, so it's not unusual for us to be up and around throughout the night, in fact it's a regular occurence.

In our house nobody sleeps much!

Usually sleep's in very short supply here and sometimes night tends to becomes day.
On a quiet night, Coo has around 10 seizures and when things are bad...well, currently the record stands at 34 a night in March this year, thankfully things are a little better just now.
Last night they were a bit less, only 5 for a change, so we managed to sleep in between them and guess what?

We slept late for once!

It's probably the first time this year, I didn't see 7 in the morning!
I'm feeling pretty up about things today it must be the extra sleep and the fact I've got a Carer meeting today so it'll be good to catch up with the others!

maz x

Saturday, 2 June 2007

Day 1: Gala...

Gala Day!

It's Gala time here so the whole community is out in force!

Today's been fun, I set up a chocolate fountain at our local Gala Day, the kids were not interested in trying fruit Kebabs all they wanted was the marshmallows thick & fast and we went through hundreds of 'em!
By the time the day was done, I felt like a proper oompa loompa or at least a member of Willy Wonka's staff and I think the little ones were wearing more chocolate than they ate!

We came home at four o'clock with the intention of going back out to the evening Gala dance but didn't make it as Coo was poorly, his Epilepsy has been causing some problems.
He'd been busy throughout the day and it had just been a bit too much.
Coo's seizures kicked in at five and by seven o'clock, I knew we'd be staying at home so no dancing shoes on tonight.

It was a fancy dress disco tonight, pity my Jackson 5 outfit won't be worn now, but there'll be other times.
I'm glad he was well enough to go today, it was fun and I soooo love chocolate.....although I don't think I could eat anymore today, well not right at the minute anyway, maybe tomorrow!