A wee time out...

Hi guys, things are on the up today! woo hoo

Thank goodness, Coo was feeling a bit better today and the sun came out too so...

We made the most of it, got out our bikes and went for a wee spin and it was fun!
I guess it's the feeling of freedom that makes it so enjoyable for Coo and I. It's so very welcome too after a spell of feeling so poorly and shut in at home!

We didn't go far mind you, just along to Looby's house and after a stop over pit-stop, for a wee cuppa and a chat, well...we cycled back home again! lol

I'm glad we were able to use our SDS (Self Directed Support) funding to buy our cycles. We really have had such fun with them and I think our fitness is slowly improving too!

What a fun wee time out we've had and if things are ok maybe it'll not be long before we can have another wee re-run!

I hope you're having a wee time out where you are too!
(((hugs)))
Maz x

Sometimes, Carers health comes last...

Hi guys, things are still a bit up and down here I'm afraid.

I cancelled my hospital appointment, it was just going to be too much hassle in the end.

Coo had a bad night, we were both totally shattered this morning and to be fair, an early appointment, at the general hospital, which is a good bit away near Kilmarnock, was always going to be problematic for us at best!

The recent developments with baby Jessie, meant Lisa was busy at appointments this morning too and I would've needed to take Coo with me so...I opted for the less stressful measure and cancelled my own appointment.
I know...I know!
Carers should look after themselves too it's important! and usually I really try to but with the week we've had, the family issues and increase in seizures already and last nights activity on top, I just couldn't face hanging around Crosshouse Hospital for hours on end and with Coo in tow too!

I will make a new appointment and promise to try harder next time!

(((hugs)))
Maz x

Next on-slaught didn't take long...

Hi guys, it didn't take long for the next onslaught to arrive!

We're struggling, Coo's seizure level is up again and it probably is down to stress this time. We've had some difficult news today, our wee grand baby Jessie has to go into hospital.
Turns out she has a badly dislocated hip, she's had it since birth and it seems the NHS missed it.  With all the checks these days, I don't know how it was missed but there we are! The wee soul is now 15 months and just starting to walk and that's when we saw she had a wee awkward gait.

Jessie will need a Spica Cast surgeries and some rehab too to learn to walk again and we're a bit shell shocked at this latest news.


We're so heartfelt sorry it wasn't picked up sooner as it'd have been easier to fix but we will do what we always do - keep strong, pull together and get through!

Wish us luck,
I hope things are more settled where you are,
(((hugs)))
Maz x

A respite break together, how lovely...

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

Our SDS (Self Directed Support) care package, has made such a difference! Before we had SDS, we could really only access care for Coo while I went away for a respite break alone. This meant, Coo had care while I was away but he always stayed home and I always felt a bit guilty about that - Not now!
Things are so much more flexible, allowing us to be more creative about how we plan and use respite and let us really get the best solution for us both and that is truly great!

Where did we go then?
Well, we didn't go abroad this time. Things have been too unstable over the last few months and neither of us felt very confident so...we opted for some short breaks instead and not too far away!
We went to Blackpool and it was fun - we had a ball! lol

It's not really changed that much since the Victorian times pictured above! lol
We decided to go with a tour company who picked us up locally and dropped us right at our hotel, it seemed a good option and it all worked out really well!
A wee Maz tip:
I saw some tourist tickets advertised online so before we left, I bought two 'Big 7' tickets from the Blackpool Tower people. We managed to visit the main tourist places while we were there and we saved money too - result! lol

I'm glad we can use our SDS so flexibly as this way, we both benefit from some quality time away together, I can still take a respite break to recharge my batteries too and I don't need to feel guilty about it anymore.
I've come back refreshed, chilled out and really just ready to cope with the next onslaught!
Respite is so very important for Carers, it's the glue that means, we can all keep it together and continue caring. All Carers need respite, it's not an optional extra it's a requirement!
I hope you're managing to have a wee break soon too!
Keep strong,
(((hugs)))
Maz x

Sunshiney days and bike rides...weeee!

Hi guys, it's a sunshiney day here and in more ways than one!

Just shows exactly how up-n-down that Carer roller-coaster ride I was talking about really is!
The weather forcast for today, was for some dry, fine weather so we'd tentatively decided to go out on our cylces today, that is, if  things weren't too bad for Coo overnight!

Sadly, Coo had a really bad seizure around four o'clock this morning so I wasn't holding out much hope on the cycling front. I was feeling a bit down about it too, especially as the sun had indeed decided to shine!
but...
Things are never how you think are they! lol
Lo-and-behold, after his meds, a wee shower and some gathering together time, Coo was feeling ok and decided he still wanted to go -  I think the sunshine encouraged him along!

Ok, we didn't cycle to the park, it was just a bit too far today but we did get out on our cycles and in the sunshine for a wee while too and that was a bonus!
Coo's asleep now and the seizures are back but it was a pleasant wee time-out for us!

I'm so glad we manged to get our bikes, we've had such fun with them! They are one of the best things we have and were funded using our SDS (Self Directed Support) Care package.  What a difference they have made!
It's funny and probably really child-like but...I found myself squealing 'Weeeeeee' in delight as I whizzed down a big hill today!

Sometimes things do turn out better than you hoped for don't they! I hope you're having some sunshiney fun where you are!
(((hugs)))
Maz x

The ATOS and Carers Roller coaster ride...

Hi guys, we're still struggling but things are a little better!

We're still on the roller coaster ride we call caring!
It's so very hard to plan things as from one day to the next, sometimes one hour to the next too as it's hard to predict just how things will be!

Coo's seizures are still problematic, the hassles with ATOS have not helped either and the seizures continue to increase. It's so very difficult to pin-point, if it's stress or yet another infection that's the cause of the latest increase in activity so we're still riding that roller-coaster for now!
We're having yet more bloods done this week, to try and rule out infection...and if it is stress?
Well, we'll try and keep things as calm as we can and hope the people at ATOS do their job and this latest onslaught ends sooner rather than later!

Why do they need to assess severly disabled people in this way?

Wouldn't it be more effective for people like Coo, if ATOS would just contact the hospital and get the information direct from the Neurologist? Take the time and care, to ask the guy who assesses Coo's health and medical condition every few months and really knows how devastating an impact Epilepsy has had on every aspect of his life?

Wouldn't that be so much kinder, less stressful and less invasive too and probably more effective in the long run?
You'd think so wouldn't you!

Does it really make sense to send someone like Coo to a medical to see if he can walk, talk and write his name? - I really don't think so!

Some day this will change and the sooner the better!

I hope you're ok where you are,

Keep strong,

(((hugs)))

Maz x

Struggles, Seizures and Angels with one wing...

Hi guys, it's been a rough few days,

Coo is still very poorly. His seizures have not really settled much so we've been living quietly.

Our doctor has been on the phone too, seems Coo's blood results and white cells are high too but is it infection or stress to blame?
Well, we're not really sure but thankfully he's a little better tonight so we'll just keep an eye on things, see how it goes and re-test more bloods again  this week - poor Coo feels like a pin-cushion!
He was a bit brighter yesterday afternoon so the boys (our son and son in law), took him out golfing for a bit, it really tires him out but the benefits outweigh this as it gives him some much needed time out of the house and some fresh air about him too!

Thank goodness we have our SDS (Self Directed Support) care-package! However bad it gets tonight, I know tomorrow night, Looby will take over care and...I will sleep!
It wasn't always this way, I used to only snatch sporadic sleep here and there when I could - God alone knows how I coped! I sure wouldn't want to go back there again!
It's a massive difference for both Coo and I, our quality of life is far better than it was too. All this just shows, how much better things can be for Carers when they have proper respite and are supported.
I'm greatful, our Local Authority is supportive and our care package works so well. I only wish it were so for all Carers and by working together, surely one day it will be!

Every so often this wee verse seems to find it's way to me and when it does I always post it...

*We are each of us angels, with only one wing.
We can only fly by embracing each other.
 - Luciano De Crescenzo

Isn't that a pretty phrase? I think so! It always inspires me and I think it's really so very apt for Carers.

Keep strong and remember to look after you!

(((hugs)))
Maz x

One battle ends another begins - ATOS...

Hi guys, ATOS are at the door!

No sooner have we sorted out our 'Bedroom Tax' struggle, now we have lurched right into another nightmare! The department of work and pensions have set the wheels of review in motion and ATOS are now at our door!

The forms to assess if Coo is fit to work, arrived a week ago, I can put it off no longer and have now started to complete them - what a time consuming, depressing and demoralising job!

Coo struggles so with this side of his disability, the need to assess and examine every tiny detail and worst still, record it for all to see! For obvious reasons, we don't take the lid off the box and closely examine things often, it's just too painful, especially for Coo!

He doesn't cope well with this aspect at all, he's already struggling with the stress and anxiety effects this process brings  and he has a massive increase in seizure activity. Last night his seizures were so violent and coming so fast, every twenty minutes and in an attempt to calm things, I had no alternative but to sedate him. At least then around 4 a.m. thankfully we managed a couple of hours sleep. We both have been so exhausted, it's been such a very difficult day for us.

I've always had to take on the bulk of the work with the forms, it's just easier this way so I'll fill them in as best I can, clarify things with Coo, add in additional supporting information and just hope for the best!
It really shouldn't be this way for people who clearly have severe disabilities - there must be a better system! Honestly, by the time this process is completed, Coo and I will have had to struggle really hard to cope with his care needs and disability at home and we'll have had to navigate through some very troubled times too.
I wish our government knew just what they were doing to us - for that matter even cared - and all in the name of 'Welfare Reform' and at such high human cost for disabled people and their Carers!

I'm posting a rainbow picture as I really need it's calming influence...

I kinda like the idea of holding one in my hand.
I think it's soothing and I hope you find it soothing and calming too!
(((Hugs)))
Maz x

Carers speak out & influence...

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

It was the launch of the new Carers Strategy Consultation and I was asked to speak at the event about Carers and support.
Councillor Dickson (a friend to Carers!), chaired the event and there were four speakers.

The head of Social Services Iona Colvin, Tommy Whitelaw -whom I know as TommyNTour!- the new Carers Champion for North Ayrshire Councillor Robert Steel and...me!

I spoke about the main issues as I see them, the importance of Carers having access to information and support and how we achieve that locally with our Carer group also the importance of online communities where the information is at your fingertips!

The other speakers gave an overview of the Carers strategy and we welcomed the new Carer Champion too. I'm glad we now have a 'go to' person to address Carers issues and concerns - that can only be a good thing!

Tommy on Tour!
Tommy is an inspirational speaker!
He's very passionate and shares so much of his Carer experience.
The triumphs and challenges almost all Carers experience on their own personal Carer journey - thank you for sharing!

It was a good event but more importantly, it's a really good strategy for Carers and that's really what we all want.

I look forward to building on and working together in partnership to achieve the aims of the new strategy so... 

If you get the chance to influence the decision makers...grab it!
Lets build a better life for Carers!

(((hugs)))

Maz x