Mixed bag day...

Hi guys, things have been up and down again here!

We struggled again as Coo was really poorly overnight and it took quite a while to get going this morning but we rallied around and in the end...we were great!
Coo's wanted to go for a bike ride for months now. (If truth be told, I felt a little guilty out on my Carers cycle day last week as I knew Coo would have loved it and was so desperate to get out too!).

He's struggled so recently, that it's just not been possible but with things settling over the last few days, we made plans to get the bikes out this morning! woo hoo!

After the poor night,
I thought the bike ride would be off but...no!
By lunch time Coo felt better and wanted to go! Ok we had to compromise and didn't go very far but it was out! and it was fun! Weeee!
He's been sleepy and poorly since we came back but we're both glad we went, nothing beats feeling the sunshine on your face and the freshness of the wind blowing you along on your bike! It was just good fun and passed a pleasant wee hour!
I guess it's still one day at a time here and that's ok too, good days and happy times are so prized in fact, I think they're a bit of a blessing really.

If you get the chance to try out a wee bike ride - go for it! Something that much fun, shouldn't be good for you...but it is!
It's a win-win kind of a deal!


I'm glad we had such a good day today, tomorrow's D-Day for the Spirometry test. I'm staying positive and sending happy thoughts and a wee smile your way,
Stay strong as will I!
(((hugs)))
Maz x

On the up...

Hi guys, fingers crossed and not shouting too loudly but...I think things may be on the up again at last!

Coo's blood results came back and his AED (Anti-Epilepsy Drug) Phenytoin levels, were too low this time. His optimum level is at the high end around 19 - 21 so for him a level of 16 is too low!
With increasing seizure levels daily and no sign of any improvement, we decided to bite the bullet and up the doses by 25mg's in an attempt to get things back on an even keel - well as even as it ever is with Coo!
So with sunshiney thoughts...

We upped the meds on Friday and a few days later, things have been a little bit better! The seizure levels are beginning to come down from fifteen overnight to eight so...result!
Eight seizures a day might seem an awful lot and it is but if you put it in context - last week, at it's worst point it was seventeen and at it's worst, Coo had thirty seizures every day for six months! It's amazing what you can cope with when you have to - it's not easy but it never is for anyone living with a difficult medical condition is it!
Coo managed to stay awake most of the day too so it's all good! I'm just happy to report, for now, things are on the up and Coo's feeling a little better so...crisis averted again!

I hope things are a wee bit settled where you are too!
(((hugs)))
Maz x

Hard hats, Cycling hats & SDS too...

Hi guys, it's been hard hats' and cycling hats' all the way this week!

First for the hard hats...
I've sure needed to dig out my hard hat and flak jacket as Coo's no better. We're no longer in anti-bio-land there's no point really! Any infection he had is surely gone by now!
The x-ray results should be in soon and our GP's arranged a Spirometry test
I never knew there was such a thing but there is and Coo's booked for it next week. The seizures are still increasing and it's all such a struggle but we're battening down the hatches and coping one day at a time!

Now for the cycling hats...
Yesterday, my wee Carer group, 'The 3 Towns Carers' had their annual sponsored cycle/walk/tea-drinking and getting around the island day and it was...fun! Ten of us set off to raise some funds and have a bit of a laugh too, some were walking and some (like us!) were cycling, taking our time and just getting around the island!

The Isle of Cumbrae isn't huge. It's eleven miles around and fairly flat too so it's just a nice wee size for a bike ride - every so often!
We had a great day.
We started with a wee cuppa and some toast (or scones!) at the Moorings in Largs and after a wee catch up away we went! A short ferry ride and we were off and running - three of us cycled, the others walked and the weather behaved beautifully! woo hoo!
I must add, of the three who cycled, one was my wee mammy aged seventy-two and fit as a flea! lol She hadn't been on a bike for a while but was keen to go so I thought...what the heck, come on! She was quicker than the rest of us and thoroughly enjoyed herself! I think she was chuffed she made it around and rightly so - whit a wee wummin! lol

Yet again, I'm reminded how fortunate I am that we have good support in place - SDS (Self Directed Support), has made such a difference. Previously, if Coo was really poorly, I would have had to cancel my plans and just could not have gone but...not anymore! Looby came to keep Coo company, make sure he kept safe and well and I had a little time out and some fun knowing everything was ok!

I only hope more Carers manage to find something that works for them too!
(((hugs)))
Maz x

Carer Struggle & Blogging in the wee small hours...

Hi guys, we're still in anti-bio-land!

It seems like we've never left and blogging in the wee small hours is never a good sign!
It's been a difficult night so far and I'm taking a wee respite over a cuppa and just trying to regroup a little!

Where to start?
Ok, things are pretty dire here.
The chest infection Coo developed over a month ago, is still with us. He's had three courses of antibiotics in five weeks and he's no better! He's had a chest x-ray too - we're waiting on results- but we're really struggling. The seizures are thick and fast, the cough is awful, the phlegm is catching him and he has a bluey tinge to his skin while he's seizing. On the plus side, he's recovering between seizures so we're still ok but it's now getting just a little scary!

Coo doesn't cope well, with hospital admissions and from past experience, out of hours services can't really help - we have the rescue meds and wander/seizure alarms at home so if things can be contained at home, and they usually can, it's easier all around just to keep a lid on it and cope until morning!
I'm so worried, we're headed back into that dark place again with aspiration pneumonia but I'm so very upbeat with Coo, please God it doesn't come to that again!
We'll see our doctor again tomorrow!

The life of a Carer sure is a roller-coaster ride!
Last week was Carers Week and I had a lovely week!
I was out and about, had some fun and some fresh air too and even laughed a lot at a 'Laughter Yoga' session and I'm so glad I did as this week has been so very difficult!

Thank God for SDS (Self Directed Support), I have some Respite in place and can access those little opportunities and chances that are important for me -  lot's of Carers are not so lucky and that's to all our shame!
One thing's for sure, I'd have struggled a whole lot more without proper support and for that I'm eternally grateful.

Stay strong,
(((hugs)))
Maz x

My Carer poems...

Hi guys, with time spent at home again, I've been in a reflective mood and...with Carers Week upon us, I dug around the blog for my Carer poems....here!

Having just received the report from the 'Carers' Parliament 2013' through the post, I've settled on this one, it's the one I wrote and delivered at the first Carers Rally in Edinburgh over five years ago - I can't believe it's been that long!
Check me out in the fetching 'Tartan and high-vis' vest! lol

‘Just a little Peace’

We don’t need any help, we’re managing fine,
Pile it on…pile it on…never look for a sign.
Carers work on with not much of a break,
They continue to care for a loved ones sake.

As the caring goes on and the load does increase,
God send us some respite, just a little peace.
Some time to go walking, kicking leaves in the park,
even just sleeping when everything’s dark.
The caring continues deep into the night,
we struggle and strive and continue to fight.
For help it is out there or so we are told,
but trying to find it...you need to be bold.

Some time for a break, to do something new.
Maybe just sit still and take time for you.
Reading a book or watching a show,
Finish something, not having to go.
As the caring goes on and the load does increase,
God send us some respite, just a little peace.

It’s not easy to spot us, we look just like you.
Carers are working and constantly too.
When others go home at the end of the day,
We still keep on working, minus the pay.
Please listen now, it’s so easy to find,
Yourself as a Carer and stuck in this bind.
Nobody knows how, it just happens unplanned,
as quick as that jar with the small grains of sand.

Heed what we say as we carry on,
caring and struggling way past the dawn.
we know lots of Carers who live in this way,
it’s not what they asked for, this role that they play.

Some time to themselves it’s not much to expect.
It’s down to government and Scottish Exec.
Some help with this task that never seems to cease.
as caring goes on and the load does so increase,
please send them some respite and just a little peace…

It still kinda covers all that I want to say. We've a long way still to go!
Keep strong my friends,
(((hugs)))
Maz

Back in antibio-land,SDS & Carers Week...

Hi guys, we're struggling this week and we're back in anti-bio-land...again!

Coo's chest infection has returned. With a wheeze like an old horse and phlegm and the dreaded increase in seizures, I kinda guessed as much - so he's on the antibiotics for another run!

We'll be living quietly this week and hoping things quickly improve as it's 'Carers Week' next week!
It's a busy week!
Previously, at this time of year, a bout of really poor health with Coo, would have had a devastating impact. All my plans and respite time, days out I'd so looked forward to and doing things that are good for me, would have all been cancelled as I'd have to stay home.

Fast forward to today and it's a different story all together!
Our SDS (Self Directed Support) care package, gives me the control, flexibility and the freedom really, to just manage to get out, to do the things that are important to me and just to live really!
What a positive change!
I know not all Carers are as well supported! Too many still struggle on alone with little real help or respite, in what is a very difficult and challenging path and that's why Carers week is so important!

Please support Carers Week, if you see Carer items in the news on the telly or even on your high street, spare a kind thought for all those Carers just doing the best they can for a loved one!
(((hugs)))
Maz x

Busy times, SIB, Carers voices being heard...

Hi guys, it's been a busy few days - I've been out with my Local Authority again!

Here in Scotland, NHS and Social Care are merging and I was asked to be involved with the Shadow Integration Board.

Now, you will know exactly how I feel about Carers voices being heard and just how important it is to influence those with the real power to positively change things for Carers so...of course I said yes!
I'm now the Carer member of the... 'Shadow Integration Board for Health and Social Care' for North Ayrshire.

My first 'SIB' event on Wednesday...
The event was busy and it was a fairly high profile group, mostly, if not all professionals working within NHS, Local Authority and third sector organisations and when we broke into working groups, I was the only lay person in our group.
Sometimes this type of meeting can be a little bit intimidating but I just remember why I have been selected and just why I have a place on the board - I'm a Carer and my experience of both 'caring' and navigating the 'Health and Social Care' system is really valuable! The experience and knowledge I have gained and shared with other Carers, is pertinent in us all finding a better way, a better deal if you like, especially for Carers. That can only be achieved by working together, with Carers placed right at the heart of policy and decision making and with places on the board...now that is valuable!

I spoke out strongly for Carers, shared experiences, issues and ideas and any doubts about why I was there were quickly dispelled! Carers need to be there!

All-in-all it was a very productive meeting - I'm glad I agreed to be involved  and I hope the other local Authorities and NHS Trusts involve Carers at the decision making process too!
I honestly feel, it's only by truly listening and working together, we can build a better service for everyone!
Stay strong and speak out wherever you can!
(((hugs)))
Maz x