A wee return to childhood...

Hi guys, I've been a little ways down memory lane today!

Do any of you remember these wee characters?



They're the Moomins!
When I was little, I loved them and read them...a lot! lol
Now, just has what prompted this wee return to my childhood?
Well, someone bought me a revised edition for Christmas and it's brought back the same joy for me today as when I was little and...just how cool is that! lol

It seems the books Tove Jansson wrote over 90 years ago about her Moomin family, are still as popular now as ever they were and that's really no surprise! The stories and her wonderful artwork have allowed them to stand the test of time.

I'm a lucky girl and what a thoughtful gift too!
I guess it's nice to return to your childhood every once in a while. I think it's good for the spirit too!

So...
I'm off to read some more!
(((hugs)))
Maz x

A look back over 2012...

Hi Guys, new year is almost upon us!
Where has the year went? I think it's time for a wee look back...

I used to get a bit stressed at the thought of a new year coming, worry about the things I said I'd do and just didn't get around to. You know the kind of thing...lose a few pounds in weight, hold onto a few of the other kind of pounds and save for a rainy day...that kinda thing! lol
I still think, the most important thing being a Carer has taught me, is to slow down a bit and just take a breath! The world still turns just the same while you catch your breath a bit. Mainly it's taught me just to count my blessings a little and be thankful for making it through the last year safely in the first place! LOL

I guess, most people take that kind a thing for granted...good health, I mean!
While you are well and busy hustling and bustling about your life at such a great pace, you never need to give a second thought to such things. You can plan well into the future for work, holidays or pretty much anything you fancy and it's only when something happens to you or your loved ones that you really need to stop and think at all!

I think that's probably what I miss most. All the planning and looking forward to things, the certainty and order of it all. It sure was a lot easier when finance was the only issue to getting things done and we could both climb a mountain if we wanted to!
On the other hand, this slower pace of life has it's upside too! We have both learned how to adapt and find a way - there always is one - it's just finding it that's the tricky part! lol

Looking back, we've been on a bit of a journey this last year.
2012 hasn't been a bad year, it's been a good one...really!
We've had some problems with meds and side effects and the seizure level's still really high at around 250 a month but we're managing! There's been lots of stress but other things have buoyed us up too!

** Coo's no worse and not nearly as bad as the dreadful 30 siezures a day all through 2007 - 8 and most of 2009! There are still crisis points and things are not brilliant by any means but they're better than they were and that's a bonus!

** With help, our quality of life has improved!

Over the last year, we've switched to a SDS (Self Directed Support) care package and it's made such a difference! I've blogged about some of the doors this has opened for Coo and I.
Strangely, it's not always the big expensive things that make the difference either, it's having the flexibility to make things work for you that's the key!

I've had some respite, we've managed to have a wee holiday and some time out with some days away too but by far the most fun we've had is with the two cycles we bought!
Who knew we'd enjoy cycling so much! lol
When Coo's well enough (and weather has allowed us!), we've managed to get out for a wee while in the fresh air. Coo's had lots of problems with infection and high/low white cells for the last few months and usually that would mean, avoid crowds and stay home but...not this time,  we managed a wee while out on our bikes in the fresh air and felt the benefit for it too!

I'm still having fun with crafts and in the garden too although my tomato growing was severely hampered this summer as we had very little sunshine! boo! hiss!

**The main three highlights of 2012?
Well, the first has to be the parliament visit!
I really felt so upbeat at the time, that things will change for Carers and in my heart, I still do!
There's a ways to go, that is true but slowly, things are beginning to change and for the better!

**Another highlight is our wee holiday!
After so many years I managed to go with Coo on a proper holiday! What a wonderful experience this was for us both and without the next 2012 highlight (our SDS package), this would have remained an out of reach dream for both of us!

**The other main highlight moving to SDS?
It has to be the change! Well the push even ('cause we were scared to risk the support we had!), to move over to SDS! Gosh that was a good move! why was I worried?
I guess it was fear of the unknown and risking the help we already had - what if they said no also the re-assessments and the stress - it was the devil to set-up but has since proved it's weight in gold!

...so it's almost goodbye 2012! I have to say, I'm feeling more supported and in a happier place than I've been in a long time and I'll remember 2012 as being one of the good years!
That said, I'm happy and optomistic about the new year ahead!

I hope you're feeling happy too and...
'a' the best when it comes - Slainte Mhath!

(((hugs)))
Maz x

A lovely Christmas Tree...

Hi Guys, it's almost upon us!

I guess it's time for a snowy picture and a great big Christmas tree...

Now, doesn't that look a lovely place for a wee holiday? I guess we can dream!lol

I hope you have a lovely day tomorrow!
Season's greetings and a....Happy Christmas!
(((hugs)))
Maz x

Respite! A few days away...

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

We travelled up to Edinburgh for a wee break, a wee change of scene for Coo and I! It had been touch-and-go all week if we'd make it as Coo's blood results are still erratic but we decided to take a chance and set off anyway and...I'm glad we did!

We have had such fun this trip! We went to the Zoo  and visited with...The Panda's!

A wee word on Edinburgh's lovely Giant Panda's...

On Sunday 4 December 2011 two Giant Pandas on a 10 year loan from China, arrived at Edinburgh Zoo and quickly settled into their new home.

The female, Tian Tian was born on 24 August 2003 and her name translates to 'Sweetie' in Chinese. She has previously given birth to twins however she has not bred with the male panda Yang Guang . She is described as having a mischievous nature and being quite fussy when it comes to bamboo.

The male, Yang Guang was born 10 days earlier on 14 August 2003 and his name means 'sunshine'. He is described as a good-natured gentle giant by his keepers.
It doesn't cost any extra to see the Panda's as  it's included with the normal ticket price but you need to book a panda viewing time as it can get really busy at times!

Edinburgh Zoo really is a great day out and the Panda's...Well, they were just brilliant!

As usual while we're away from home, we stayed over at the Travelodge . At the Central one, Coo feels comfortable here and we like the fact it's a wee turn off the Royal Mile and right in the heart of all the places visitors want to see! We had a comfy, cosy stay and after a full day wandering around the Zoo and a quick bite to eat, we were glad of the cosy room and comfy bed!

We visited the winter festival markets and wandered around the old town too and as we'd booked an exra night we even managed to squeeze in a visit to the Camera Oscura!  - What a great place!



The Camera views are brilliant but there's so much more! From holograms and puzzles to hands on curiosities and fun things to see and do - We loved it! lol

I'm glad our SDS (Self Directed Support care package), allows us to really get some quality time away. It was always so very difficult before. We just couldn't afford the hassles and problems that come with Coo and travelling any distance. He would be sleepy and irritable before the day was through and it became a logistical nightmare and financially unaffordable to take two nights away just so we could visit somewhere for a few hours and then risk seizures on the way home as we just didn't have the finances to stay over. In the end, we just didn't go and looking back, our quality of life really was non-existent.
How things have changed!  - The SDS has made things we dreamed of possible!
We know we're lucky to have such support and are truly greatful for all the positive changes we now have and only hope all Carers soon have the same chances and support in place!

It really was a fun few days away and has given us both a great boost. Coo's been really sleepy since we got back but we both had a whale of a time and it was worth it! lol
We really had fun and I hope you're having some fun where you are too!
(((hugs)))
Maz x

Carers in Panto-land...

Hi guys, it's beginning to look a lot like Christmas!

My wee Carers group went to the pantomime and it was great - oh yes it was! lol

 

It's great to spend some time with other Carers and at this time of year, where else to visit but...Pantoland! lol

We travelled up to the  Palace Theatre in Kilmarnock (our nearest theatre), and had a lovely wee couple of hours transported back to our childhood. We sang songs, clapped and cheered and generally just had some fun away from caring!

We topped it off with lunch and a cuppa too and all-in-all it was a smiley, happy, wee time away!

I'm really so greatful for our SDS (Self Directed Support), care package that allows me this much needed respite and time out just for me!

It really was a happy day, I hope you manage a wee happy time out too!
(((hugs)))
Maz x

A crafting day..

Hi guys, I've had a wee break today.

Coo felt good day today so our son and son-in-law, decide to take him golfing. Just what he needed fresh air and a couple of laughs out with the boys!

So...while they were away...
Hi diddle-de-dee a crafting day for me! lol

I decided to get crafting and make a start on baby Jessica's first Christmas stocking!

In a few hours we went...
From this...

 

To this...

 

 

I hope she likes it!

I'm sure Looby will like, that in the middle, I've placed the wee Jessica Bunny patch from her first wee baby clothes!

 

It was a good day! I did have fun quilting and best of all, the rain stayed away and Coo and the boys had a good day out in the winter sunshine!

 

Job's a good 'un!

(((hugs)))

Maz x

Christmas Shopping...

Hi guys, it's that time of year...again!

When the advent calendar gets all filled with sweeties and popped on the wall, I can deny it no longer...it's Christmas shopping time! lol

I kinda like the hustle and bustle of department store shopping! All the Christmas twinkle and sparkle too but...I don't like the queue's that usually go along with the annual Christmas shopping spree!
I usually try to get things done and dusted by now but with Coo's low white cell saga and our having to avoid crowded places this last month, I'm now running behind with things a little...

Enter Mum!
She loves to shop and knows where all the cool bargains are too! lol
It's decided, Coo's out ( he say's that's a result - for him!) - it's just too crowded and risky - the last thing we want right now is another infection so Looby will P.A. and come keep him company and Mum and I will hit the shops!

Wish us luck guys!
If it's a good day, we could get it all sorted and be sat in a lovely tea-shop eating cake by three! lol

I hope you're doing ok and getting things all sorted too!
(((hugs)))
Maz x

Another Neuro visit...

Hi guys, we've been at the hospital again...

A visit to Coo's Neurologist was on the cards this week.
He's a nice guy and tries to keep an eye on things with Coo and I and we're both glad to have him!
Although there's not much left for now to help with Coo's seizure activity, it's good to keep in touch with a specialist every so often and we learned this the hard way!  
Coo had major problems a few years ago and it took forever, (well it felt like forever!), around six months actually, to find a neuro to try and help... it was a very scary time for us both!

Anyways, there's nothing new to try drug-wise for Coo but non-the-less, it was a good visit.
Coo's neuro. listens and that's important! It's soul destroying to have a feeling of everything being so out of your control and at times, that's how it is for Coo. It's good he has someone who doesn't push too hard and is willing to progress things at Coo's pace, when he feels ready.

This time we've decided to wait until the spring, when there's less chance of colds and infections and then try to increase one of the AED's (anti-epilepsy drugs). It may help a little but as it's really cold here and already the time of year where Coo struggles most with increased seizure activity and infections, he wants to wait until spring and give things a better chance!
Even a little improvement would be great!

We're doing ok, the bloods came back and yet again the white cells are low so we're avoiding busy, public places and those dreaded coughs and sneezes!
I hope we get a dry day and can maybe get out on our bikes again - that would be nice!

I hope you're doing ok where you are too!
(((hugs)))
Maz x

Let's go on a bike ride...

Hi guys, we went cycling! woo hoo!

It was the first time either of us had been on a bike in years....and it was fun! lol

Mindful, Coo still has some infection kicking around his system and low white cells mean he needs to be careful around crowds, we were going a bit stir crazy this week stuck at home and needed to get out!

Well, as it turns out this week, the winter sun made a rare appearance here so... we decided to get out for a wee ride on our new bikes! Don't worry ours are way more modern than these! lol

We'd been hoping for a wee break in the weather to let us get out there and just have a go!
We wrapped up really warmly...the works - hats, scarves, gloves, two layers, ski jackets too and away we went! We weren't out for long, maybe around an hour and we took things really slowly too and it was great! We both enjoyed ourselves and came back with a real zest for life - I think it's the most alive I've felt in a long time!
We are really so greatful for the SDS (Self Directed Support), funding that allowed us to purchase our bikes in the first place! I hope we get some dry days soon and can have another wee trip out again! It sure has done us both the world of good!

If you have an old bike hiding somewhere in the shed, it might be fun to dust it off and have another wee shot - we really did have fun!
Happy days!
(((Maz)))

Thoughts on the first Carers Parliament...

Hi guys, I was asked for some thoughts on the recent Carers Parliament so I'm going to share my them here...

 

Thoughts on Scotland’s 1st Carers Parliament…

I’m glad I got a place!

Others were not so fortunate so it made it more important to speak out if given the chance!
Coming from the coast, it was agreed the Carers from our area would travel up together so we left the night before and stayed the night in Edinburgh. This was a good idea, it gave us time to get to know one another a little bit too.

I felt nervous and excited on the actual day, I also felt a responsibility to try and raise the issues I knew were important to Carers across Scotland! We, the lucky ones who got a place, really needed to hold our nerve and find our voice - tell it how it really is for Carers!

There was a buzz about the place, people were excited and there was an air of expectancy too. People really didn’t hold back, they wanted to share their stories and highlight what does and doesn’t work for Carers in today’s Scotland.

I think the greatest impact of the day came when Carers not only asked their questions in the chamber but shared a little bit of their life, the struggles but also the triumphs when things worked well.

I struggled on alone for over twenty years before accessing some help and respite – it was a difficult time. Meeting other Carers at the Parliament, those who are still struggling on alone with little respite or assistance brought it all crashing back to me. Just how isolating and life limiting long term, things can be, for Carers themselves.

I came away with a feeling of satisfaction, we were listened to, ministers did respond positively.

This was tempered with a feeling of bitter-sweet, I’m no longer in the unsupported dark days in my caring role, I have help now but other Carers are still struggling in darkness with little help or respite, that left me incredibly sad, there’s still such a long way to go.

 

It was a wonderful day. It raised awareness of Carer issues and hopefully opened the door for further changes that will benefit all Carers.

 

Maz x

http://www.scottish.parliament.uk/newsandmediacentre/55355.aspx

More bloods...

Hi guys, we're living quietly this week.

Coo's blood test results came back yesterday, courtesy of a phonecall from our doctor! This time the white cells are very low and that's a worry on two counts...
 Firstly - There's probably still some infection kicking around Coo's system.
           and...
Secondly - Coo's immune system isn't working properly while the white cells are low so he's prone to more infection - lovely!

Yet more medication...again. We'll keep a close eye on things and repeat the bloods next week, anything to avoid a return of the nasty pneumonia bug!
Thankfully his seizure level hasn't majorly increased this time so we're managing things ok. It's just a case of being a bit more careful, wrapping up in hats, scarves and gloves when we do venture out and avoiding busy places where lots of people are likely to be sniffing and sneezing!

I know it's definately wellie and brolly weather here - it's been very rainy so far this week but hopefully we'll be able to wrap up warm and get out for a wee walk in the park at some point.


I guess for now, it'll be...yet again...hot chocolate drinking and keeping cozy - I'm sure we can manage that! lol
I hope things settle for us soon and I hope too, you're managing to avoid the sniffles where you are!
(((hugs)))
Maz x

Rainy days...

Hi guys, it's been rainy days all the way here recently!

Our weather has taken a tumble for the worst and it's been grey days and heavy rain here.
Coo's chest infection is still kicking about his system and he's got added seizures too so we've been mostly stuck in at home!

Thankfully though, here in Scotland, we've avoided the horrendous weather front our american cousins have recently had to deal with so we should not complain! I just think it's more difficult to cope in general during the winter time, don't you? I guess it's those grey days making for even greyer moods too!

So...I've decided!

We have to leave the house today to get Coo's bloods done later anyway so...I'm going to get us both all wrapped up cozy and persuade him to wander around in the fresh air for a bit, maybe stop for a wee cuppa somewhere nice!

A wee while out! ~ I'm sure, it'll do us both the world of good!

We're doing ok and I hope you're fairing ok where you are too!
(((hugs)))
Maz x

Back in Anti-bio-land...

Hi guys, we're back in anti-bio-land yet again.

Coo has a chest infection and a temperature so we're battening down the hatches, keeping cosy and hoping things settle down soon! I'm not really surprised as November is usually a difficult month for us. After the pneumonia of previous years, Coo's prone to chest infections now and living on the coast, November is usually pretty much, windy, wet and chilly!

Yet again, I'm digging out my hard hat and flak jacket!
The anti-biotics should kick in soon so hopefully we'll be doing a whole lot better in a few more days.


Meantime, I'm keeping cosy and warm with some soothing hot chocolate
but which one to pick...
Right now I have three on the go! lol
Tangy chocolate orange,
Zingly mint and my current favourite...
Turkish Delight - Mmmmmm!

I do hope you're keeping cozy and comfy where you are too!
If you need a wee pick-me-up, try some hot chocolate - it sure works for me!
(((hugs)))
Maz x

Spanish Jessie...

Hi guys, thought I'd share our wee Jessica's Halloween pic...

When Coo and I took our recent trip we brought back a wee something for our grand-daughter Jessica...

 She's a wee Spanish cutie pie - check out the wee shoes! lol

 I think it's real nice having little ones around again and it gave Coo a wee boost too!

 

Hugs

Maz x

Halloween...

Hi guys, Happy Halloween!

I remember my kids singing this wee Halloween song when they were little...

Halloween is coming!

  Halloween is coming,

     Skeletons will be after you!

   Witches hats and big back cats...

 Ghosts and goblins too-oo-oo!

Just where does the time go I wonder?
We're having a quiet time as Coo's still poorly,
I hope you're having a lovely time where you are though!

Happy halloween holidays!

(((hugs)))

Maz x 

Pat's Petition...

Hi guys, more on Pat's Petition...

Over the last year, my Carer friend Pat has been working hard, speaking out for Carers and disabled people!

It's a worrying time!
Welfare reform is upon us and our government had cut hard and deeply. It seems Carers and people with disabilities have been dis-proportionately targeted in these benefit cuts and thankfully people like Pat have chosen to speak out....

Pat Onions has submitted an e-petition to the government website.
Pat is blind and Pat is also a carer. When we asked her why she submitted this petition she said -

We were determined to attend the Hardest Hit rally in Edinburgh. Determined, in spite of disability, to stand with the others who had made the long and difficult journey. Determined to show we were united as one voice against the vicious cuts we are all enduring. We knew there were many thousands who couldn’t make it. Disability, ill health, providing care, or cost would prevent them coming.   - We made it!

More on Pat's Petition:

http://carerwatch.com/reform/?p=83

If you've not already signed the petition, there's still time!

(((hugs)))
Maz x

Coughs 'n' sneezes 2...

Hi guys, those coughs 'n' sneezes are still kicking around here!

We're still in need of the wee cosy blanket!
Coo's getting mightily annoyed about things now. He's had this cough from mid September so we've been doubling up on the inhalers, steadily using pain relief, sipping the hot drinks, keeping warm and keeping an eye on Coo's temperature too but things are not improving much!

We know he has infection.
Last weeks blood results showed raised white cells and his AED (anti-epilepsy drug) levels were down so it's been fun this last few weeks and it's not letting up.

I guess you could say...
I'm digging out my hard hat and flak jacket as yet again we're on the dreaded AED - see-saw! You know the one...too much drug in the blood mean more seizures and just to complicate things...too little drug and, you've guessed it - even more seizures!

To increase the meds or not - well that's the million dollar question isn't it!

On one hand, there is an increase in seizure activity this week and Coo's very sleepy but then again the infection is still kicking around Coo's system just now and that could be lowering the drug levels. The problem is, if we increase the meds, as the infection clears, the drug level rises and things become toxic..not good!

I think, on balance, we'll stick it out for another week, until the next blood test are done and just hope things settle a little!

Wish us luck!
Let's hope for some winter sunshine, wouldn't that be nice!
(((hugs)))
Maz x

Carers Parliament...

Hi Guys! A wee update on the Carers Parliament...

I think October 1st was a good day for Carers. Over 180 Carers went to the Scottish Parliament and shared the Carers story. They spoke of the issues they had just managing to live and continue to cope day to day in most cases.

Carers at Parliament 1st October 2012

Here's the link to the debate: http://www.scottish.parliament.uk/newsandmediacentre/55354.aspx

It's published on  he Scottish Parliament website and I'm at around 40 -50 minutes in (debating chamber part 1).
I was in the morning debate, I explained that I'd been at both ends of the spectrum, being totally unsupported and struggling on alone for over twenty years, then through the long journey to where we are now with our Direct Payment and SDS to a feeling of value and support being in place.

I hope my message was clear, we need legislation!
It's not fair and should never be based on how supportive your Local Authority is or even your postcode! All Carers need effective support and access to respite on a regular basis and it should be their right!
I hate the way Carers usually have to fight for everything and at a time when they're feeling under pressure and really low it's just not acceptable they are left floundering around searching for help!

I saw some Carers I met a little over three years ago, when we held the last 'Carers Poverty Protest' in Edinburgh. Worryingly, where things had improved for me and Coo with our Direct Payments and SDS set-up, things had not improved at all for them and they were still struggling on alone even now three years on!

The lasting impression I came away with from the first Carers Parliament is...

• While things are improving for some Carers, myself included, there remains so much more to be done!
• The vast majority of Carers attending on the day did not have adequate support in place or any access to regular respite, or even any respite at all!
• Infact some Carers admitted, if the Scottish Parliament had not paid for replacement care for the day, they would not have been able to attend and speak out at all!
• Respite is still out of the majority of Carers reach!

We really still have a ways to go don't we  and we must keep the pressure on that's for sure!
(((hugs)))
Maz x

Respite and together too...

Hi Guys, we've been on a respite break together!

How great is that!
What a change the Direct Payment and new SDS (self directed support) care package has made.
This is the first time ever, we've been given the option to use some of our respite funding to take some time away together and it was brilliant fun!

Coo has not been abroad in almost fifteen years. Due to all the seizure activity, it was always just too expensive to insure him to travel so effectively, we've just had to stay at home...not this time though, the times they are a changing! lol

Picking a destination?

Well, somewhere definately in Europe as it's short flights! and it must be warm and sunny, with a nice pool and not too far from the beach would be good too!

We decided on Salou in Spain...

...and it was a good choice!

Lovely beaches, good hotel and glorious sunshine - what a bonus and what a great time we had!

Coo didn't have any more seizures than usual and so long as I was careful to keep him awake as much as possible during the day the levels were manageable. When we went out, I made sure we were back at the hotel each afternoon so Coo could sleep and I caught some sun with a wee cuppa sitting on the balcony - peaceful bliss each day!

I know it's not everyone's idea of a holiday, a bag full of meds, no alcohol, sleep periods through the daytime and early to bed but it was just what Coo and I needed most! A complete change of scene and some carefree time out!
We've both come back feeling a lot more relaxed and less stressed and so greatful for the SDS funding that enabled us both to recharge our batteries!

Back to the grind though! Flu jabs and the usual bloods were awaiting our return!

Don't be afraid of SDS if it comes your way!
It is now showing a significant improvement in quality of life for both of us so...if it's offered, reach out, grab it with both hands and make it work for you!

(((hugs)))
A sunny, smooth and very relaxed Maz x

Back in Anti-bio land...

Hi guys, first day out this week and it's to the...doctors surgery! woo hoo While not my favourite venue, it is out non the less and beggers can't be choosers! lol

Coo has an infection so we're back on the Anti-biotics yet again!
We saw a different doctor this time and he seemed very nice, thankfully Coo felt comfortable with him so things went ok.

I'm digging out my hard hat and flak jacket again to cope with the usual seizure increase that always comes along with an infection never mind adding the antibiotics and anti-inflammatories into the mix too.
I think it could be a difficult few days, thank goodness for the seizure alarms, it's times like these they are most useful!

Meanwhile, I'm still battling with the awful cold Coo shared with me too! lol Thank God, I think I'm over the worst of it now and just in time for this latest onslaught!

Wish us luck - I hope you're doing ok where you are and I hope too, you're avoiding the coughs and sneezes!
(((hugs)))
Maz x

Carers and colds...

Hi guys, you've guessed it from the title...Coo's shared his cold!

My oh my we're in a bit of a fix - I've now gone down with Coo's cold. Thank God I don't have his complications though, he was up seizing every twenty minutes last night so we're both a bit shattered today and that was before the winter chills decided to pitch up for a visit with me!

Don't worry things could be worse!
Luckily Coo's kinda over the worst of things just as I'm coming down with the chills and general aches!  I've doubled up on the inhalers and started the pain relief for all those aches and pains that just make having a cold such a right pain - literally! lol

I'm pretty sure I'll kick things fairly quickly...
so meantime I'm just, taking it easy, sipping hot lemonade and keeping cosy under a wee blanket!

Let's hope it all goes away soon and normal business is resumed! lol
(((hugs)))
Maz x

Coughs 'n' sneezes...

Hi guys, coughs and sneezes spread diseases says the old rhymn...

They certainly do!
Coo has a cold, well, at least, I think that's what is wrong!
He's very wheezy and chesty and he has a temperature and there's an increase in sleepiness and seizure activity today. Odds on it's a cold coming! We've doubled up on his inhalers, popped some pills to help with the temperature and have been keeping inside in the warmth for the last few days in the hope things will settle down.

Poor Coo, it's not much fun today for either of us I'm afraid!

Seizures while his lung capacity is compromised are always a worry but when you're poorly, you really need to sleep and with Coo that means yet more seizures! He's been pretty much sleepy and seizing, on and off all day and he's phlegmy too.
The vomiting seizures are back with us tonight - and that's a worry! I honestly find them the scariest of all, especially after the Aspiration Pneumonia of a few years ago, he struggled with that nightmare for months - we both did and it was terrible!

We'll get some bloods done, hopefully tomorrow and check the white cells for infection and...
Just stay positive that things will improve soon!

Just the other day, I remarked to another Carer, that chest infection time was fast approaching but I didn't realise it was actually here with us already!
It really must be Flu jab time soon too!

Never mind, so far I've avoided catching Coo's cold so chin up and onwards and upwards! lol
I hope you're cosy where you are and you're avoiding the cold bugs too!
(((hugs)))
Maz x

Carers group...

Hi guys, my wee Carer group are meeting tomorrow.
It's always good to spend time with other Carers don't you think?

Just what's on the horizon for us this time?

Well, another Carer is coming to speak with me about our SDS - our new care-package set-up. She's considering going with the more personalised way of providing care for her family and needs some more info. before taking things further.
It can be scary going with SDS or setting up a Direct Payment for the first time and I guess other Carers who have been there and bought the T-shirt, are the ones to ask how it really is aren't they!

Here, there seems to be some money from the NHS available surrounding Carers and nutrition so there's a food worker coming along tomorrow too! We'll see how this could fit in with our group, maybe some cooking on a budget? or healthy alternatives? Who knows, I think we'll just see what they can offer and take it from there!

Sometimes it's just the chance to have a cuppa and a wee chat, even just offering a wee bit of support to one another and kinda checking in to make sure we're all still surviving and nobody's in meltdown this month!

I hope you're enjoying a wee cuppa where you are too!

Chin up and keep strong!
(((hugs)))
Maz x

Time out days...

Hi Guys, it's been fun today!

Coo had some time out with Stevie - golfing what else!
When he's well enough, Coo likes to get out on the course for a wee while so while the boys went out to play Looby, Mum and I were what are commonly known as... 'ladies what lunch'! lol

It's good to have some free time to wander around and linger over a wee cuppa sometimes isn't it! It's the simple things that most people just take for granted as part of every day life, that Carers miss so much and find so precious whenever they do get the chance  - I know I do!

The new SDS care-package still seems to be going well!
I'm relieved to say, after the initial RAS (resource allocation system) hassles, there's been no further hic-ups so far! I'm still confident it really was the right way to go and the additional flexible funding is starting to make a difference for us.
We've had some benefits already, some time out and access to respite too but I think the main benefit I've found so far, is the lessening of stress that comes from just knowing the funding is there to draw upon when we need it and that's a very different feeling from what we've been used to for such a very long time!

I really feel this SDS personalised way of providing care and support has real potential to improve the quality of life for Carers and can't wait till they roll it for everyone!

We're doing ok and hope you're good where you are too!
(((hugs)))
Maz x

Respite...

Hi guys, I've been away for a few days respite - woo hoo!

Mum and I usually go away for a few days at this time of year to Blackpool! It just so happens that last weekend was the big Blackpool illumination switch on and...we were there! lol

The sun shone during the day and the lights shine all night - how cool is that! lol

We stayed in the Royal Seabank Hotel again and it didn't disappoint! We had brilliant meals, friendly staff, a lovely room with a real cosy bed and (for me!) best of all...lots and lots of sleep! lol

Most peoples idea of holidays is to let off some steam and stay up late but in my position it's kinda the opposite! lol
On my holiday, I like to potter around at leisure, go where and when I fancy, have lots of tea and cake and...sleep...usually as much as I can! lol

Never the less, I shopped till I dropped, lingered cake-eating in tea-shops and slept like a baby all weekend and it was great!
Thank goodness for our Direct Payment!
It pays for the replacement care from Looby, while I get a rest and honestly, I'd now be so very lost without it! I still remember the times when I was crying out for a break and had no support and thank God those days have truly gone.

In reality, the D.P. means, I now can have a complete break away and a good rest too as I know Coo will be just fine when Looby takes over! By all accounts, everything went well while I was gone, Coo and Looby enjoyed some days out too and I've come back nice and relaxed so...jobs a good 'un! lol

I'm home now and well rested and I hope you're having a bit of an easier time where you are too!
(((hugs)))
Maz x

Carers Strategy...

Hi guys, I've been out visiting with my Local Authority again!

This time, it was around their new Carers Strategy.
I was speaking to a group of social work managers and office bearers about good practice and good news surrounding our personalisation care package. I shared a bit about my caring role and both Coo and I's SDS journey so far - it's been a bit of a long and winding road!

I actually directed them here to the blog! I told them about the issues we had while setting up our current care package and that when we finally finished the RAS (resources allocation system), we honestly felt we had reached RAS enlightenment!

My talk went down well and I hope having Carers on board at these strategy meetings will make it all real for the social workers and councillors involved in such an important decision making process.

I honestly feel, just as I do with personalisation and SDS, the Carers Strategy if developed appropriately, has the potential to offer real and vital changes for Carers and I guess that's why, I put myself out there when I can and kinda tell the people making the decisions just how it really is for Carers!

I find Case Studies tend to make more of an impact and don't come across as just words and if you have Carer involvement in there right at the start when they're writing the strategies in the first place.. all the better!

Keep strong and if you have the opportunity to influence the decision makers -  just go for it and tell them how it is!
(((hugs)))
Maz x

Carers Parliament...

Hi guys, guess what? I'm going to Scotlands first ever Carers Parliament!

It will be held in the Scottish Parliament in Edinburgh on the first of October and Carers will get a chance to pose questions to ministers. It's going to be televised on the Parliament Channel too so it should be good!

Having had such a positive experience so far, first with our Direct Payments and more recently with our SDS personalisation care package, my question is...

***When will we see the promised Direct Payment for Carers in their own right? This funding will enable Carers to purchase much needed support and respite and this alone could make such a massive difference! A wee bit of additional funding can relieve a lot of pressure and make everything just that little bit easier to manage!

It'll be interesting to see what other Carers ask and more importantly what the ministers answer will be!
I've time to submit some other questions too so please leave a comment if you've a question you'd like posed on the day!

I honestly think it's only by working together and supporting days like this, even if they only succeed in raising awareness of Carer issues, that Carers will ever really get the support they need!

Lastly, if you are one of the lucky ones who are there on the day maybe I'll see you!
(((hugs)))
Maz x

Holiday choices...

Hi guys, It's been sunny weather here for a few days!

It's made such a difference to the mood in the house!
I often find this is the case, grey days make for even greyer moods and a wee drop of sunshine seems to raise the spirits and lighten the load a little so...long may it continue! lol

Our SDS - self directed support or personalisation care package - what a label! It's really the new system that gives us some control with Coo's care and how his budget is spent and it seems to be opening up some new possibilites for us!

For the first time in years it could be possible for us to access some travel again! We've not been abroad in many years as it was just too expensive with Coo's unstable seizures, insurance was always very expensive, if they'd quote at all!
Sometimes travel insurance cost more than all the other holiday expenses put together! Usually this meant we just couldn't afford to go so we'd just stay at home in the U.K instead.

***It seems things are about to change for us!

With some support, plus a wee friendly push from our social work friend to try new experiences, added to the fact, we managed to find a medical insurance company who would insure Coo for less than the usual inflated rates, means...we've decided to spread our wings again and try a few days in Europe! Woo hoo!

I'm not sure where exactly we'll go yet but it'll be somewhere within Europe that's for sure. That way it's only a short flight and a lot easier for Coo. I guess the next step is to have a wee look around and see where we'd like to visit!
It's exciting times well for me anyways!
I guess some people take things like holidays and travel as run of the mill and expected but like most Carers, I view it very differently as a bit of a luxury and something to be prized!

I was really worried about switching to this new SDS sysem for our care package. I just didn't want to risk what we already had and maybe be worse off, not so much financially we'd have managed somehow but being left with less support than before was the real worry for us!

I'm so glad we stuck with all the SDS assessment hassles and those RAS (resource allocation system) teething troubles as it's proving to be a very positive experience! For the first time, in a long while, I honestly think our quality of life is improving and that's something I think we both had kinda given up hope on!

If the option of Self Directed Support comes your way, don't worry and stress about it, give it a try, it's really working well for us!

Happy days and sunshiney thoughts,
(((hugs)))
Maz x

Holidays and happy days...

Hi Guys, we've been away for a few days in the sun so it's been holidays and happy days too - woo hoo!

We went down to the borders at Dumfries and Galloway and spend a restful week lazing in the sun and just generally living life at a slower pace, it's been good for us and also fun!

Coo and I needed a wee break from all the stress that's been happening setting up the new SDS (self directed support), care system.  We've both struggled with this and now it's all agreed and things are in motion, it was time for a wee change of scene...

We stayed at Wigbay just around the bay from Stranraer and had fun exploring from Portpatrick - where we enjoyed a bonfire and firework display, through to Drummore and right down to Scotlands most southerly tip at the lighthouse on the Mull of Galloway!

Guess what?
They have a tea shop at what seems to be the top of the world!
It's perched right up high on the cliffs and has fabulous views and food!
What do you think?
Lashings of sticky toffee pudding and a wee cuppa right up on the clifftops?
 - I call that a Result! lol

While we were away, Coo kept relatively well, (well, no worse than usual!)  and Looby, Steven and baby Jessica came to stay for a few days too so it was kinda like a home from home too.
Best of all, as Looby was there, I managed to get a wee hand and some sleep when Coo was poorly.

I'm glad we had the opportunity to get away for a wee break, especially to such a lovely, tranquil place and I think it's done us both the world of good.
We both had a really restful and enjoyable time!

I hope you're enjoying some peaceful times where you are too!
(((hugs)))
Maz x

That AED see-saw again...

Hi guys, we're back on that dreaded AED (Anti-Epilepsy Drug) see-saw yet again.

Too much drugs in the bloodstream mean yet more seizures and then there's an unexplained dip with not enough drug and that means even more of them!

It seems we just can't get a break these days so just like these wee frogs it's a continual up-n-down kinda thing this week!

Thankfully things seem to be settling a little so I think, at last, we're starting to come out the other side, well, I hope so!

The new personalised care system is now up and running.
It seems to be working out ok and even though it's early days, I think it's going to be a better system for us - woo hoo!
All we need now is Coo to settle a little bit more and then we can start working on getting fit!
This summer, we decided to buy some bicycles with an aim to improve our fitness but Coo's been so unstable recently we've not managed to sort things out yet. It'll be fun picking some new cycles. I think Coo will enjoy checking out all the details and me? Well, I'll probably just pick a girly purple or pink one! lol

I hope the weather holds out long enough so we can get out on a bike ride so...
Lets hope for some sunshine!
Happy days,
Maz x

St Swithin...

Hi guys, Good old Saint Swithin was way off this time!
It was dry on his feast day so we had a fighting chance and I was hopeful but...no!
It's rained and rained and rained this week, we're practically washed out! lol

Never mind, the welly boots and brolly has been well used this summer! lol

I got drenched nipping down the garden for some strawberries earlier! Although I have to say...
It was worth it!
The wee alpine ones taste lovely and  best of all...there's millions of 'em out there so...woo hoo!

Just how are things growing where you are?
Here everything is really late this year!
My tomatoes are still non-existent! The plants are healthy and strong and the buds are coming out now but by this time last year, I was already munching them with salad! I guess we really haven't had enough sunshine at all.
I think they're on a go slow! lol

Let's hope August brings some sunshine or my wee tangy toms will all still be green and only any good for the chutney pan!

Coo's moods have settled now the Social Services review is over and thank God for that! I was really worried about him as things were getting difficult to manage. I mean, more moods and upsets for Coo, mean yet more seizures and it becomes a bit of a vicious circle!
He's bouncing back again now so yet another crisis has been averted and that's the important thing!

Now things are settling and Coo's more like his old self, we can take our time and plan what we really want to do with our additional budget.
It's a long time since we thought of such things and it's quite exciting really but...what to do!

Maybe some fun activities, some days out, a wee holiday or...
a combination of all three!
Who knows but whatever we decide let's hope the sun shines for us. One things for sure, it'll be an exciting time this year - Coo and I have not really had the chance to get out and about much and this new self-directed-support, managing your own care and activities could make a real difference for us!

I do hope you're having some sunshine where you are  or at the very least some sunshiney thoughts!
(((hugs)))
Maz x

Happy Saint Swithin's Day...

Hi Guys and a Happy Saint Swithin's Day!
Isn't Swithin's window pretty!
It's all apples and raindrops!

Old traditional proverb...

St. Swithin's day if thou dost rain
For forty days it will remain
St. Swithin's day if thou be fair
For forty days 'twill rain nae mair.

I hope it's true this time around as for the first day in weeks...we've had no rain! woo hoo!

I hope Saint Swithin's has been sunny and fair for you too!
(((hugs))) Maz x

Tumbling times...

Hi guys, Coo's taken a bit of a tumble this week I'm afraid.

After the relief of sorting out all the care, I was hoping for a wee quiet week!
In a way, I suppose it has been!
The mood-swings have all gone and things are calmer but the seizure levels are still on the high side and to cap it all?
Coo tumbled out of bed during a seizure!


While that's not unusual, he seems to have popped his eye somewhere along the way! He insists it's ok, it's a little bruised and raised and I'm sure he's right but I'll keep an 'eye' on things anyway! Pardon the pun! lol

Where has the sunshine gone? 
It's been dire here!
Wellie boot and brolly weather right enough! lol
Don't get me wrong, it's warm enough, it's just really...wet!
I'm hoping the weekend, will show an improvement as it'd be nice to get out to the park for a bit, blow away the cobwebs!

We could sure do with some sunshine here!
I hope it's a sunny day for you where you are too!
(((hugs)))
Maz x

Review news at last...

Hi Guys, the care package review is now done too so.... 
a great big woo hoo!

It's really a huge sigh of relief all around!
SDS - Self Directed Support- is a new system and we were a bit worried that, in the end, it wouldn't deliver the services we need. To be honest, I was beginning to think this review was stuck in reverse gear, then all of a sudden, it's done and dusted at last!

Coo and I can let go of all those worries about finance, safe in the knowledge the funding is here now to cover all the care costs and outcomes for the coming year.
We know, we are lucky to have such a supportive local authority that understands the issues, struggles and  really, the demands there are, dealing long term with such a difficult disability and we truly appreciate all the support they have given us.
God alone knows how we'd fare without it -  I still remember those dark days when Coo and I struggled on alone. Trust me, it was not a happy time for either of us that's for sure!

I'm just glad it's over and we can confidently move on now.

The forcast this week is for some sunshine and now, with this resolved, I'm sure I can forcast some sunshiney thoughts for us too!  lol
I'm feeling positive things are improving for Coo and I!
Happy Days!

I sure hope you're having some sunshiney thoughts where you are too and if you're stuck in review? Don't give up hope, sometimes things do work out for the best!
Keep strong,
(((hugs)))
Maz x

Enlightenment at last the RAS is over...

Hi guys, this time we have reached RAS enlightenment! and...
Thank goodness for that!

The Social Services resources allocation system or RAS for short, has calculated an estimated budget for Coo's care package. Now we just need the local authority to agree the funding and then? Well, we should be good to go! Woo hoo!

Coo is less stressed this week as the care plan review is nearing the final stages...all going well that is! It's been a long and difficult road at times but I think we are winning and I'm hopeful the budget will be approved and we can all start to move on.

It's a worry when things are under review as there's always the potential it will all go wrong and we won't get the funding to buy the care Coo and I need to cope with things. I have to say, in the past, we have been lucky, usually we don't have too many problems and the care plan is agreed pretty quickly. This time it's a little different as we've been moving onto a different system all together! It's also fair to say, it's not been without it's challenges either and at times we've both struggled.

I just hope all the additional stress and struggle has been worth it and this new system delivers a better quality of life for us both so fingers crossed and here's hoping!

We're coping ok and I hope your coping where you are too!
(((hugs)))
Maz x

Moods, meds and reviews...

Hi Guys, I think, I may have spoken too soon.
Coo's still having problems with moods and anger so things have not been easy!

I contacted his Epilepsy Nurse for some advice and it seems he's not alone! The AED (anti-epilepsy drug), he added into the mix 18 months ago, can sometimes have these emotional & behavioural side effects. It's not common but it does happen so...Lucky us!
***but what to do now?

Well, the newer drug helps his seizures a little so he's not too keen on changing the drug regime but neither of us is keen on keeping the mood swings! I can see where Coo is coming from, the drug does take the edge of things a little and that's got to be a major deciding factor!

We've taken the time, thought about things and then we started to think, maybe just maybe, the current, protracted care-package review we've been struggling with over the last few months has played some part! I know it's been stressful, Coo's struggled at times and so have I so I guess it's certainly possible!
I decided to up the anti and contact Social Services.
This has gone on long enough!
If it's effecting Coo's health and we're both feeling stressed, the review either needs to be completed quickly or dare I say it - left for yet another day!

I'm pleased with their response, things have now taken a massive leap forward and seem to be nearing an end - thank God for that!
I hope, once this process is over and Coo's stress levels go down, the sunshine will come back and we'll be back on an even keel!

Here's hoping things are more settled and sunny for us all soon!
(((Hugs)))
Maz x

On the up? I sure hope so...

Hi guys, things are back on the up again! Well, I hope they are!

Those nasty mood-swings are gone and things are getting back to normal, well, normal for us anyways and - thank God for that!
We've had a few days away for a wee change of scene - I thought it would be good for us so...we went to visit Looby and Steven.

I think spending some time with Looby and wee Jessica has done us both some good - she's a wee cracker! She's always smiling and I think it's infectious as when we're with her, she definately makes Coo and I smile too! lol

Things maybe on the up with our social services issues too. I really hope so! It's been a long and winding road with this care-package review, that's for sure!

It looks like we may, at last be, making some headway with this and I'm so relieved. Coo's been totally stressed throughout this process, he's not coped well and if I'm honest, I've not found it easy either so I'm kinda hoping it is coming to an end and sooner rather than later!

If things work out as planned, with this new system, we will both have a better quality of life and I guess that's why I've stuck with it and tried to keep Coo positive about things.

I really hope it works out and the additional hassle has been worth it! and if things don't go to plan?
Well...I think, we'll stay positive for now and just cross that bridge when we come to it!

I think things must be on the up right enough! The moods are gone, the care-package seems on the last leg and best of all? The sun has made a welcome return today! Yeah

Don't you find everything that little bit easier when the sun shines? I know I do so let's hope it stays with us for wee while!      

Happy Days!
I hope the sun's shinning for you too!
(((hugs)))
Maz x

AED meds and moods...

Hi Guys, things are a bit of a struggle here and it's not been a good day, I'm afraid!

We've had an increase in seizure activity and worst still the nasty mood-swings have reared their ugly head! I'm not sure what is wrong this time, it's usually either an infection or a drug level problem that's the cause so I'm just keeping an eye on things and trying to keep a hold of my patience!

It's so very difficult sometimes to keep a clear head, especially when Coo's running around shouting and so out of control. Thank God they don't come often but when the moods do come, I have to remind myself this is not him it's the disability and the meds but at times, it's not easy to manage that's for sure!

 Hopefully things will settle down soon!
 Either...his temper will run out of steam or he'll fall asleep but one way or another, calm will make a welcome return that's for sure!

Until it does?
Well, cue a wee cuppa and a calm down!
Maybe some chocolate too! lol


The latest blood results are due back on Monday, hopefully we'll get things sorted soon so...upwards and onwards!

Let's hope for some happier days!
(((hugs)))
Maz x

Social Services Review take...6

Hi Guys, yes we're still stuck in review...for now!
Things are moving again, at least I think they are, and we're making some progress at last!
The story so far, it's... complicated!  lol
Well, it was always going to be wasn't it?
It's never easy moving to a new system and you know what they say...no pain no gain!

I'm feeling a bit more optomistic this week, I think we're now starting to make some real progress so as far as that goes it's...all good! On the down-side, Coo's not been so fortunate, he's been real poorly this week.
He's very sleepy and it's been difficult to keep him awake so we've had lot's of seizures yet again. The temperature and weather changes from one day to the next, hasn't helped things either! I mean, one day it's really sunny and hot and the next?

Well...it's all grey, overcast and rainy! It's fair to say, it's been pretty much a bit of a mixed bag weather-wise, well, here anyways!
I guess it's...
dig out your brolly and boots time yet again - woo hoo!

It's just as well, I like splashing about in puddles like a big kid isn't it! Now before you laugh, you should try it! Honestly - it's got a kind of therapeutic effect and it's probably really good for lowering your stress levels too - go on you know you want to!

Happy Days, from a splish-splashing Maz!
Even if the weather isn't quite what you'd like for June enjoy it anyhow!
(((hugs)))
Maz x

Tea Party...

Hi Guys, as if I don't have enough this week and with all of Coo's current care-plan hassles...
It's Gala Week for our community!

Now, usually I love all the rushing around and busy-ness! but this week? It's been a bit of a stressful time!

 I'm glad I stayed committed to this Gala though.
The local people get so much out of it and today was a...
Community Tea Party!


All my favourite things!
Tea, sandwiches and cakes! woo hoo!

We played a slide show of our town on days gone by and I think the elderly residents enjoyed the wee wander down memory lane! I was really stressed earlier but I think spending time doing something kind for other people, has helped with my stress levels.

In the end, even with the additional work envolved, the tea party was fun - and the cake was pretty good too! lol

I've decided I'm not stressing anymore today.
I think a wee cuppa always helps, it's a warm and soothing... (((hug))) in a mug! lol

I hope you're not stressing and you are ok, where you are too!
(((hugs)))
Maz x

RAS Enlightened? err no...not yet!

Hi Guys - we have not reached RAS enlightenment after all!
Our journey has stalled this week!

It seems there's a problem with the way our budget has been calculated and it'll have to be fixed before we move on - a cause for worry? Mmm...not sure!

Unfortunately, Coo is back in stress-city!

He's worryied the budget will come back now at a lower level, and we won't be able to pay for the care we need! and...
How do I feel?
Well, I just hope the care budget doesn't reduce by too much, because as requested, I've already started to plan for the required care needs and outcomes for the coming year!

Let's hope God's with us and it's only a small hic-up and not a full blown review of things yet again!

Here's hoping it all works out, surely we couldn't be that unlucky...Could we? Anyway, our local authority are meeting to discuss things tomorrow so...fingers crossed!

Hope you're living stress free today where you are!
Well, as stress-free as you can be!
(((hugs)))
Maz x