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Wednesday, 26 December 2007

Coughs and Sneezes keeping us down? Oh no they're not!!

Hi all, Coo's had a cold the last few days but we're not letting it get in the way of a family Christmas!

We went to Coo's sister's yesterday and had a brilliant time and today we were out visiting my family too!

Woo Woo that's 2 days out on the trot and not home till after dark....we're turning into what my granny would call...a pair of dirty-rotten-stop-outs!

We've had a nice time and tomorrow it'll be jammies and Chocolates in front ot the Telly to recover.
I hope there's something on to keep us entertained!

I hope everyone's had a good time and it's only been eventful in the way you would want Christmas to be!! LOL

Upward and onward - new year next!

maz x

Friday, 21 December 2007

Edinburgh at Christmas Time...

Hi all, we've been away for a few days.

It was really kind of a surprise for Coo.
We initially wanted to go to the Christmas markets in Germany but he wasn't stable enough to go abroad.
A friend told me Edinburgh had a brilliant German Christmas Market all through December so I secretly booked 2 nights in the capital for us!

I'd managed to get a deal on Travelodge rooms away back in October and took the chance on Coo being well enough to go.
As the time came near I was a bit jittery and we very nearly didn't go on Tuesday morning, as Coo had been real poorly over the weekend but we thought about it and decided to go anyway.

I'm glad we did!

We went up to Edinburgh on the coach and stayed over in the Travelodge for two nights.
It's on a turn off the Royal Mile so it's a brilliant location if you're walking around and I'd booked a family room although there's only the two of us to give him loads of space!
While we were away Coo settled a little bit too so things went well!

Edinburgh is all lit up for christmas, the German Christmas market is set in the Princes Street gardens beneath the Castle and the whole place was fantastic!
The trees were all lit, there was a skating rink and ice sculptures too and an old fashioned carousel.

Aw it was all so very pretty!

The National Museum's good too loads of hands on things to make you smile!
I got my photo taken wearing olden days clothes at one end and a space suit at the other!!

We went to see the Parliament too as Coo had not visited before, I liked the style of the place but Coo wasn't so sure.
I guess you either love it or hate it!

Best of all, we got to see Joseph at the pavilion and he did indeed wear his fabulous coat!!
Coo has always wanted to see it and for once I didn't need to keep nudging him to keep awake as he was spellbound by the whole thing!

Coo has slept and seized on and off all day today so maybe it was a bit much for him but we both did so enjoy it all.

I guess our travelling's done, well for a bit now anyway!!

maz x

Tuesday, 11 December 2007

Scotlands Health Secretary no less...

Well, I've been busy ...again!

I got the chance to speak to the Health Secretary Nicola Sturgeon yesterday and pose a question about a Carer I did!!

I asked her about the recent changes to the Direct Payment system in Scotland which are about employing family members.
I explained how our Local Authority seem to be implememting the legislation to their advantage and not to the benefit of the Carers.
Basically they're saying they won't allow it any more and as there's a Local Authority discretion clause they are getting away with it, well for now anyway!

Nicola said it was not the intention of the Government to make employing a family member more difficult and she seemed quite sympatheric to the cause and took my letter back to Edinburgh with her.

I'm hopeful she will look into this as if you live in a rural area or the help you need is a bit taxing for the average care worker, it's probably essential you can continue to employ a family member or chances are you'll never get any respite at all!!

I guess time will tell!

I have enjoyed the hussle and bussle of last week but I'm kinda glad it's going to be a bit quieter next week as I will need to don the hard hat and flap jacket again to cope with the Christmas Shopping run...Joy to the world!

There's always something isn't there!!

maz x

Friday, 7 December 2007

The Conference and the Parliament what next!

Well, the conference in Glasgow went really well!

I found out lots of info particularly about Direct Payments and care services that I didn't know so it was very worthwhile going!

I've been to Edinburgh this week too!
It was Carers Rights Day and I'd arranged for my group go up to visit the Scottish Parliament in Edinburgh.

Our local MSP Irene, had organised a tour of the building and a buffet for us.
So we had parliament pieces and tea!!

It's an impressive building and it turned out to be a really interesting and enjoyable day!

I must admit though, I'm totally shattered!

Coo had a particularly bad night and that coupled with this weeks two days out, especially the three hour travel upto the capital yesterday has left me feeling a bit drained!

I'm glad I got to take part in both events even though it'll probably take me into next week to recover.

It was soooo worth it!!

maz x

Monday, 3 December 2007

T.E.N.S. machine out again...

Hi all, I initially thought I'd take the pain killers the doctor gave me on Friday, the nights Looby (our daughter and Personal Assistant) comes to sleep over...well it's not going to plan!

The tablets I got will just not do!

I tried them out on Friday night as Looby was staying over so I could sleep undisturbed and I didn't hear a thing the whole night long...GREAT for me but not so great for Coo!

I've got the T.E.N.S. machine cranked up and slapped on again to try and get some pain relief that won't knock me out so I'll to be able to wake up for Coo!

I hope this shoulder settles soon as I'm finding out that I'm not a good patient.

I wonder if that's a Carer failing!!

Nevermind, I hope you're coping where you are!

maz x

Saturday, 1 December 2007

Sore Shoulder...not again!

Hi all, my shoulder is still giving me some problems, from earlier posts you may remember how I dreaded the Hydrocortizone injections and guess what?

It's flared up again!!

I've been back at the doctor, who says there's not much other than surgery to be done now and he doesn't advise it as he's certain the problem's a repetitive injury caused from continually jerking from sleep to awake while coping with Coo's seizures all night long!


He's given me some stronger pain killers and sent me on my way for a few weeks.
The only thing is, I can only take them the two nights Looby stays over as I need to be awake for Coo the other five!

Speaking of Coo, he's still fighting that viral infection so he's sleeping around the clock and his seizures are all over the place again.

Thank God it was a Looby night (Looby's our daughter and P.A.) so at least I got to SLEEP yippeee!

I always feel more positive about things after some real sleep as it's usually just snatched time here and there.

Those two nights a week bought with our Direct Payment are precious!

I hope things are treating you kindly where you are!

maz x

Friday, 16 November 2007

Carers Scotland Conference...

Hi all, I've been invited to a conference for Carers in Glasgow on December 5th.

I've sorted out extra care, social Services will add an extra 10 hours care to our Direct Payment that week so I don't need to feel guilty about asking Looby to come stay for the day with Coo.

It's quite a while since I was in the big city!

I think from the information I've recieved it'll be a worth-while day as lots of issues will be covered and I feel I need to go and speak out for those Carers who find it too difficult to get away for a full day.

If you're in Glasgow at the conference maybe I'll see you!

maz x

Thursday, 15 November 2007

Bloods again...

***I guess we all live to fight on another day!***

Hi all, Coos blood results came back this morning and his Phenytoin level (anti epilepsy drug) is too high!
The safe dose is between 40 and 80 and Coos at 89 this week so we're back on that dreaded, drug see-saw effect, where it's too much or not enough...again!!

His white cell count is high so the chest infection that's been going for the last few weeks is still hanging around too....Joy!!!

We're reducing the Phenytoin dose by 25mgs from today so I guess it's hard hat and flap jacket time once more!

Thankfully it's a Looby sleep over night tonight so I'll sleeeeeep anyway!

maz x

Tuesday, 13 November 2007


Well, I think Winter has arrived, it's dark in the mornings and it's back again by tea-time!

This moring I had to scrape ice of the car for the first time this year too and my hands were red raw!

So it's official...'Winter's here!!'

That reminds me, I need to haul out the hats and sift through the scarfs as I've a feeling we're gonna need them sooner rather than later!

Coo got his bloods done again today as he's still got the dregs of that chest infection kicking about but on the whole he's doing ok!

Last year wasn't much fun, it was one infection after another and seizures galore!
At least, I know this time, with a little help from Looby and our Direct Payment, I'll have some sleep so I'm optomistic we'll cope better.

The Carers war-cry?...

It sure does make all the difference when things are bad, even only a few hours can make things a bit easier to cope with can't it!!

Roll on the snow!

Big jumpers, woolly hats and loads of hot chocolate!

On a day like today it doesn't seem so very far away!

I hope things are being kind to you where you are!

maz x

Sunday, 4 November 2007

More equipment...

Hi, we're still battling on through the latest chest infection!

I think we're over the worst of things now as the seizures are settling a bit (10-ish a day).
I had to speak to the O.T. at Social Services again as we're needing another alarm as Coo's taken to wandering and bouncing around the place during seizures so his bed alarm isn't enough to cope with things.

There's always something isn't there?

Luckily I have the Net to find out what's on the market!

I went to easylinkuk - where our bed seizure alarm came from and found one that would help.
It has an infra-red beam that will activate and let me know if he gets outta bed.
Hopefully there'll be no more skydiving down stairs at 3 in the morning!

I like this company as their equipment is reasonably priced, they know what they're talking about and don't try to make you buy more than you need!!

Our O.T. is working on this a.s.a.p. so hopefully things can be contained till it's sorted out.

maz x

Tuesday, 30 October 2007

Not again...

Hi all, Coo's picked up another chest infection...again!

We all know what that means - meds all over the place, more seizures and less sleep too. I'm glad I got some sleep last week while I was away with my mum at Blackpool!

I guess it's time to dust off the hard hat and flap jacket again and winter just arrived this week!!

Aw well, maybe it'll be over quicker this time...we live in hope anyways don't we?

maz x

Saturday, 27 October 2007


I've been away for a few days respite to...Blackpool and it was FUN!

The famous lights are still sparkling and the weather behaved for a change.

My mum went with me, we drank hot chocolate ate warm doughnuts and shopped till we dropped!!

Using our Direct Payment meant our daughter Looby moved in to look after Coo while I was away. They both coped pretty well so all in all it was a stress free break for me.

I feel really good for having a few nights sleep all together for a change and my breakfast made for me!

We visited the Tower, went right up to the top!
Saw fish in the aquarium, caught the circus show, ate cornetto's and had some tea in the famous ballroom and all for 15 quid entry!!

Visiting the Blackpool lights sure was brilliant fun!

maz x

Thursday, 18 October 2007

This time...

We got our Flu jab's done yesterday and so far so good, Coo seems to be ok, well no worse than usual anyway!

We're both a bit sleepy today although I'm not sure if that's down to things in general catching up with us or the Flu jab, who knows!

At least it's over and done with.

I've had some special hot chocolate, made with camomile and honey in the cupboard waiting for an occasion when I needed a pick-me-up warming hug and tonights the night!

Let's hope it lives up to expectation, I'll let you know!!

maz x

Friday, 12 October 2007

Not this time...

Hi Guys!

Well, after all the hassles to set up Flu jabs for both of us today...
they didn't happen!

Coo had a bit of a cough again yesterday and was up seizing most of the night so we decided, it would be best to wait another week in case of any further complications.

So we got it all to go through again next Wednesday...what joy!

Never mind, I'm sure it'll be fine in the end!

maz x

Thursday, 11 October 2007

Busy week...

Well, I've been busy!!

Thankfully, Coo seems to be over the worst of his viral infection so things are a little bit more settled for the minute anyway, he's still seizing pretty bad but it's cope-able!

My training for benefits advice? well it's all done and dusted!
I've filled a few D.L.A. forms in for some people already so I think I'm going to be busy!

I also managed a day out with the Carers too!

On Tuesday, 14 Carers went across on the ferry to Arran, it was gorgeous, the weather held out and the sail was a treat!

While on Arran, I got to visit -Arran Aromatics... They make lovely soaps and perfumes and they've got a viewing window in the shop area so you can see just how soap is made - Cool or what? LOL

The cheese factory sit's right next door so of course we had to go 'sampling!'

I never knew you could get so many different kinds of cheese, there were an array of smells and colours to pick from!

I tried a chilli and a garlic one with a real smokey flavour to it and very nice it was too although I drew the line at one cheese called the 'Stinking Bishop' I think that's taking things just a touch too far!!

After all that cheese, where do you think we went next....?

Arran Distillary!
The whiskey place and before we go any further, I'll admit I don't touch alcohol as, to be honest, I've never really liked the taste much.

The tour was brilliant, if a little sniffy at times although the others who do take a wee taste on occasion assured me the place smelled BRILLIANT!
I must admit I was really impressed about the whole thing, it's really interesting all the processes that need to be done to get a bottle of whiskey, I would never have guessed how complicated it was!

After the tour everyone got a taste of a few of what my granny calls the 'nippy sweetie' itself, a 12 year old malt and some blended ones. I had a tiny taste on my lips but I guess it's just not for me but it sure was fun finding out how it was made!
Without our Direct Payment I'd never have been able to go at all and would have missed all the fun!

All that excitement this week and back to reality with a bump:

It's Flu Jab time!

maz x

Tuesday, 25 September 2007

Coughs and Sneezes!

Coughs & sneezes spread deseases...well aint that the truth!

It's not even winter yet and Coo's picked up a viral infection.
The seizures are through the roof yet again but I'm hopeful things will settle sooner rather than later this time!

I'm going training again, this time sessions on welfare rights.
I know it's a struggle and more work but it keeps my brain ticking over and stops me getting bogged down with our own issues.

I'm off for the first session today so we'll see how it goes.

maz x

Monday, 10 September 2007

Coo Houdini!

Well the last few days have been pretty eventful!

Coo's seizure activity is pretty high at the minute with 12 - 15 a day so it's pretty hard going, anyway, over the last few nights, he's managed to get out our bedroom before I could stop him, an escape Harry Houdini himself would be proud of!!

I can honestly say skydiving downstairs at three in the morning is not to be recommended!

Luckily he's not hurt himself but it's still pretty hairy-scary, at times!

I will try to speak to our O.T. again hopefully she's come up with something to help.

maz x

Tuesday, 4 September 2007

A Carer day out...

Well, thank goodness Looby stayed over last night!
All those seizures over the last few days were beginning to take a toll and I've been feeling a bit stretched the last few days.

I got a sleep last night and thankfully things are a bit brighter.

I've got a day out planned tomorrow with my local Carers Centre, I'm off to Loch Lomond shores, with 12 other Carers!
It's a long way on the coach but it's usually a fun time away!

I've come to the conclusion, days out on my own are rare as pearls and the 'Direct Payment' that enables me to pay for Looby to sit with Coo has really opened up new areas for me, previously I just wouldn't have been able to go at all!

A minor miracle - a service that truely works!!

maz x

Sunday, 2 September 2007

Bad night....

We've had a bit of a sticky time overnight.
Coo's had lots of seizures, some only 30 minutes apart and we're both shattered!

This morning he seems to have developed a bit of a cough so that'll be the cause of it all and it's probably time for another anti-biotic run.

Well, I guess we're back to hard hat and flap jacket time again!
Hopefully it won't last for long this time.

maz x

Wednesday, 29 August 2007

Wash day blues...

Well, the worst thing possible!

My washing machine has broken down.
Why oh why is it, these things happen at the worst possible time?

I've got a pile of sheets and soiled clothes too grrrrr!
I sure hope the repairman comes soon!

This image made me smile!
It kinda helped me forget my wash day blues for a bit! lol

So...washing hassles apart we're doing pretty ok today!

maz x

Friday, 24 August 2007

A few days away...

Well, we've had a few days away in the borders at Castle Douglas and guess what?
We found the sun!

It was all, glorious warm sunshine, country walks and ice cream eating!
Best of all we had 6 whole days worth!

Coo kept pretty well (a few seizures a night) while we were away so I had a bit of a break too.

We both have felt the benefit of having the sun on our faces, ice cream cones and giggling again.

We sampled the cream o' Galloway ices and can whole heartedly recomend... millionaire shortbread ice-cream as it was...totally delicious!

The last couple of nights we were away, Coo was beginning to seize more so we knew it was time for home but it sure was fun while it lasted.

maz x

Sunday, 12 August 2007

stuck in...

Hi, Coo's been sleepy all day so there's been lots of seizures and to cap it all it's raining again!
Days like this do make me think of other Carers who are stuck in all the time as it must be pretty difficult to cope with.
I'm finding it hard this time, being stuck in for a few days, not sure why as the latter half of last year and the first three months this year, I hardly got out at all.
I guess the Direct Payments are starting to open things up for me and I think once you've managed to get out and about a bit, it's harder to go back again.
Does that make sense?

I'm hopeful Coo will be a bit better tomorrow and we'll get out for a bit and who knows, maybe the sun will come back...let's hope so!!

maz x

Saturday, 11 August 2007

Rainy days...

It's been very wet here this summer and it's raining again!
I even had to dig out my wellies this morning to go feed my bunny and she's only 8 feet from the back door!

I had thought about taking Coo to the park today but that is definately a no-go!!
Maybe we'll get a run in the car later, if it ever goes off...I'm not holding my breath though...

I guess, if you didn't like rain you wouldn't last long in scotland!

Never mind it's sunny inside!
maz x

Thursday, 9 August 2007

What did I see?..Harry P!

Well at last we got to see Harry Potter and it was worth the wait!
Coo had a pretty much settled night (6 seizures) so we decided we could go!
Thankfully Looby decided to come too.
I enjoyed it so much although around half way through Coo started to nod back and forth so we took it in turns to check he was awake and giving him a nudge every so often so he wouldn't sleep and seize.
Looby was sitting next to Coo so she got left with most of it but things went ok, no dancing in the cinema this time!

We got back home without any hassles so all in all it was a good day.

Only thing is Coo saw the trailler for the new transformers movie and wants to go to that one too!
I guess we're back to planning, waiting for a settled night and get ready to run the cinema gauntlet again and sooner than expected too!

Talk about a CINEMA trip! It's more like planning a military operation!!

maz x

Sunday, 5 August 2007

Oh that Jab...ouch!

Well, I did need another jab, my shoulder wasn't as bad as last time but it's still bothering me.
What is it they say? no gain? I'm not so sure about that!

Things are still a bit unsettled here, lots of seizures and with a sore shoulder too, my patience isn't at it's best...

Never mind, Looby's here to stay over tonight (thanks to our Direct Payment!) so I'll get some sleep....Yippeeeee!

As Scarlett famously said 'tomorrow is another day' and so it is.
I've got a Carer meeting and one thing's true: a cuppa and a chat are always welcome.

I usually feel better after spending some time with other Carers.

maz x

Tuesday, 31 July 2007

The Tens Machine...

Well, this shoulder is still pretty painful so I thought I'd dig out the TENS machine and give it a bash!
It's a while since I've needed to use it, away last year, anyway, I got the thing out and then decided I'd better check there was still some power in the battery.
I remembered the power light doesn't come on until the pads are connected, so far so good...NOT!
I turned the power on and forgot I was still holding the blooming pad - I was reminded of that quick, smart as the shock went up my fingers!!
It's only a small electrical shock but it did give me a bit of a fright!

It could have been worse, the machine did help with the shoulder pain and at least my hair wasn't left standing on end like a hedgehog!

Roll on tomorrow and I'll see what our doctor has to say!

maz x

Monday, 30 July 2007

Care for the Carer!

Why do we Carers insist the people we look after see the doctor as soon as humanly possible but when it comes to our own health? well we can wait...can't we?
Does this sound familiar?
Last December I eventually went to see our doctor after months of on and off pain from a troublesome shoulder.
Our G.P. asked how long it had been bothering me and I said, I saw him, a few months previous so he checked the file and I did see him...a full year pevious!
I knew it had been bothering me a while but didn't realise just how long!!
Turns out I needed a Hydrocortisone injection to sort it out and it did till now, well around a month ago!
I guess old habits die hard, it's taken me a month to sort out an appointment to get it checked...again.

I'm not sure if it needs another Jab but it might...I'll know by Wednesday that's for sure!

maz x

Sunday, 29 July 2007

The Trossachs, Callander & the Eagle....

Our day trip to the Trossachs and Callander with the club went really well.

The scenery reminded me what a beautiful country we live in, green rollings hills, misty blue & green lochs and every tint of heather from palest blue, through pink to vivid purple, it was so rich you could almost taste it!

Coo did well too!
I knew he'd be ok on the journey up as he was pretty excited about the day but I'd worried about keeping him awake on the the way home, but it was fine!
He took lots of pictures with his digital camera and this kept him amused and more importantly awake and seizure free!

The highlights of the day?
There were a selection of birds of prey at Aberfoyle, beautiful kestrels, owls and hawks.
Coo had his picture taken with the biggest Golden Eagle we've ever saw and he was thrilled to bits!
We also saw a shepherd putting his dogs through their paces herding goats and boy do they work hard!

I must admit it's taken Coo most of the weekend to recover from the trip as he's been really sleepy but it was worth it.
It's a long time since we were out like that!
We really had a brilliant day!
maz x

Wednesday, 25 July 2007

Our club...

The club went well on Monday night,it was our very first craft night!
We bought Teddy Bear banks which were made of plain white clay and had pots of paint in a rainbow of colours with them.
This meant, before the night was done there were an array of multi coloured bears the like you'd never see in any environment or wildlife show!
I guess it's a bonus the furniture stayed the same colour it had begun!

On Friday the group's all off on a day trip out, bit of a mystery tour so who knows where we'll end up.
I don't really mind as long as there's a wee tea shop, (and maybe a scone), I'll be fine!

maz x

Monday, 23 July 2007

At last a....Sunny Day!

Well, the sun is back this way for a visit!
It's been so wet and horrid this summer I wondered where it'd gone!

Coo's in bed and I'm ever so glad we got the seizure alarm as it makes things so much more easier.
I can take the handset into the garden with me to at least enjoy the sunny day however long it lasts.

Still no Harry Potter yet, but we're still working on it!

Tonight we've got our club, it's held in our local community centre and it's a bit of a social thing really.
We began the group along with a friend as there were quite a few people with health problems or additional needs living locally who wanted somewhere to just hang out and have a bit of fun once a week.
A quick note to our community centre and the club was born!
We have 10 people who come along every week, I get to chat,drink tea, singalong to some music with the others and Coo gets to play a few games of pool or table tennis.

So that's why Coo's asleep just now, if he has a sleep in the afternoon, he can stay awake (and seizure free)long enough to let us both get out to 'play' tonight!

Seriously though, it's a hassle free night out we both enjoy!

maz x

Thursday, 19 July 2007

Cinema: To go or not to go....

We've been trying to get to the cinema all week to see the new Harry Potter movie without success.
Coo's been having a rough week again - no sleep and lots of seizures, he really wants to go but needs to have a settled night or at least some sleep before we're brave enough to chance it!

I'm afraid with no sleep and lots of seizures the night before AND a nice warm, dark cinema, it would be just about impossible to keep him awake and the minute he dozed off: he'd start to seize so no Harry yet again today!

Never mind, I'm sure it runs for weeks yet so we'll get there and until then there's always the trailer!

maz x

Monday, 16 July 2007

Back on the see-saw...

We're struggling a bit this week.

Coo's A.E.D.'s (Anti Epilepsy Drugs) have gone toxic....again.
The dreaded see-saw effect.
This means there's too much drug in his blood stream and he needs to reduce his meds again.
We're both shattered as Coo's had an increase of seizures over the last few nights.
I only hope things can settle down as we don't see the Neuro again for another 6 months.

Hopefully things will be more positive next time.

maz x

Thursday, 12 July 2007

Sad days...

We got word my cousins beloved daughter who had cerebral palsy has died.
She was a beautiful girl and only 26 years old.
It's such a shock for us all.
Memories of Laura, laughter, full of fun and always giggling.
God bless and keep her now she's far from us.

maz x

Sunday, 8 July 2007

Our O.T. visit....

Well, our O.T. came, she wants us to consider putting an extra doorway at the top of our staircase to try and stop Coo getting onto them while in seizure.

We're now waiting on someone coming out to measure things up and see if this would be possible.
I think it's a good idea as Coo does escape pretty regularly from our bedroom while still having seizure activity and full seizures anywhere on the stairs are not really a good idea!
We'll see what happens.

maz x

Tuesday, 3 July 2007


Well, as if things weren't hectic enough this week our OT (Occupational Therapist) has phoned and asked to come out tomorrow.
I think it's about last months Social Services review of our Direct Payment as the worker raised some concerns about equipment.
We were using a baby safety gate to try and keep Coo in our bedroom at night during complex partial seizures where he is mobile and goes wandering!
Anyway, our O.T. thinks a child safety gate is not the answer so I guess she's coming to explore things further.
I suppose we'll find out more tomorrow!
maz x

Monday, 2 July 2007


Well, thankfully things have started to settle down and are getting back to normal, well normal for us anyway!
I'm glad Coo only drinks occasionally as I'd probably read the riot act if it was more often.
So last week the stress was surrounding the wedding and this week?
Well, we've got a Neurology appointment on Friday so this week won't be hassle free either!

I've tried to divert Coos attention form the Neuro appointment by booking us on a 'Heart Start' course this week.
It's a free course running locally teaching resucitation so I thought it'd be a good idea to learn!
I'm not sure how successful it'll be at keepin his mind off the Neuro on Friday but at least it'll give him something else to focus on, well that's the plan anyway.

Sometimes, it seems like we just lurch from one crisis to another but I guess that's just life!

maz x

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!