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Thursday, 13 April 2017

Struggles, Stresses & Shingles...

Hi guys, yet another stressful month here!
Still no decision from DWP on his PIP claim/assessment so things with Coo have been a blast...again! The stress, health hassles and continuing seizure spiral sure took it's toll and Coo's AED's (Anti Epilepsy drugs) hit toxic levels last week.
We had blood tests done to check things in the afternoon and by nightfall, ADOC - the out of hours NHS services - were on the phone with the toxic news and a 'reduce the meds now' message! We were back on that dreaded AED drugs see-saw again!
Our already leaky boat, just got a great big bit more leaky - we coped or I thought we had. We know the drill, drop doses, contact the Neuro and let him know we're struggling, hole up at home -I call it hard hat and flak jacket time- and wait it out!

Coo's neurologist, Dr Tyagi's great! We've known him for ten years, he's patient and kind and really listens to him, he's an all around great guy! He sorts an emergency appointment and between us we sort out a plan of action and begin to move on!
Blood results are better this week so panic over you'd think? NO!
I got poorly with the shingles! What the heck!?! I'm seldom proper ill! I think it was probably stress related and a mixture of everything going on. Thankfully I'm on the mend now and Coo's doing better too so result...woo hoo!
That circle of support is so important for Carers especially when they are poorly!
We're lucky the SDS (Self Directed Support) care package, kicked in seamlessly and Looby - (our PA) came to stay for an extra few nights until I felt a bit better and we all lived to tell the tale! lol

I think that's really the difference it makes when Health & Social Care get it right! Carers have some much needed help and feel supported, they recover quicker and are able to cope with the situation and from an economic point of view, costly hospital admissions are avoided too as with proper support it's all managed that much easier at home!
**It would have been so much more difficult coping without it that's for sure!**

I'm hoping for a more restful time...a few weeks stress free would be nice for us all though wouldn't it!
Stay strong
Maz x

Sunday, 19 March 2017

Hard hats, PIP, DWP & Health hassles...

Hi guys what a time we've had here!
Where to start...ok, we'll start at the top...

It's been hard hat hell here! Coo's seizures spiralled out of control. At it's worst point this week, we were back up to 30 seizures a day and back on the dreaded rescue meds again...and just why was that? (pursed lips and sarky growl)...
Despite sending a barrow load of paperwork, copies of Coo's Social Services assessment of needs and four months worth of the dire seizure diary, a registration letter from our doctor (well...locum 1 yet another story!), and a supporting document from Coo's Neurologist too - now, you'd think that'd be enough wouldn't you? - but no! DWP/ATOS/Maximus/Capita or whatever they're currently calling themselves still decided they needed to face-to-face assess Coo and his disability! The stress triggered everything-and-then-some what a total nightmare! Anyhow, after a month of struggles dealing with the increase in seizures, moods and the rest, Friday and the DWP arrived at last. Thankfully the assessor was friendly and kind, spoke to Coo patiently and went over everything as quietly and calmly as possible - I think things will be ok, well I hope so but we've another 4 to 8 weeks to wait for a decision so we're still struggling on and making the best of things!
We need to work together!
Why oh why can't the DWP just ask you to sign permission, look in your medical file and speak to your consultant and save people with disabilities and their Carers from all the additional stress?
It would probably end up being a quicker more efficient way of doing things too but what do we know? eh?

If you're under review or moving from DLA to PIP get your info together, stay strong and try and fight your corner the best way you can!
Maz x

Friday, 3 February 2017

Fabby Feb, SDS, Carers Advisory and raising the Carer voice!

Hi guys, I just turned around and January was all gone's to a fabby Feb!
Here's a clue...

 Oh dear...
Between Coo and I, we've been racking up hospital appointments!
Typically for January, the cold weather came bringing with it, the coughs, sneezes and seizure increases too. In between appointments, jabs, pills and potions (for us both!), we just pretty much kept warm and got on with things at home.

Now we've entered February, Coo's feeling back on the up again and that can only be good news for us both!
Caring is such a balancing act especially in winter, add into the mix some health issues of your own and it can be a bit of a hard time all around.
It's at times like these, it's so very important to have some proper's the difference between drowning and struggling to safety and survival! For me, it means, I've still managed to get out and keep some interests away from home. Before we had SDS (Self Directed Support) in place, things were very different and I was stuck at home trying to hold it all together and struggling along for what seemed like ages! just what is so different?

Well, for one thing, I made it out for coffee and some support with the Three Towns Carers, now that might not sound much but support from other Carers who understand is crucial!
I also got along to the latest Carers Advisory meeting to discuss Health and Social Care developments and our 'Carers Appreciation Card' and I made it up to Edinburgh, meeting up with Carer reps from all over Scotland!
Without the flexibility and freedom of SDS this would just not have been possible! I would have been still stuck at home and I'd not have done my bit in making sure Carers voices are heard!

Keep strong and keep going as will I!
Maz x

Tuesday, 27 December 2016

3 H's...Carers Health, DWP Hassles and Hanging on in there...

Hi guys, hope you've had a happy Christmas and are still feeling some Christmas cheer!

We've had some fun here!
We managed out to Coo's sister Diane's for Christmas dinner with all the family and we both had a lovely time too even with those 3 H's I mentioned in the mix we still managed to share some fun and laughter and just forget about things for a wee while!
#H1...Carers health well...
I've not been blogging much, typing still hurts and my pain levels are awful at the moment. I'm gutted my mobility is now effected, my ankles and knees are the worst and I kinda waddle like a duck at the moment but the feet splint thingies from NHS Ayrshire & Arran's Podiatry services are helping a little so every cloud! lol I'm still hoping things will improve and all the pills and jabs every week will come good in the end!
#H2...The dreaded DWP Hassle!
Oh no! This really has been total hell to deal with and at this time of year too - a happy Christmas kick from the Department of Works & Pensions! Now, don't get me wrong, I totally get why people need to be assessed to see if they are indeed ill and entitled to some financial help making it easier to manage their disability but I don't understand (and I don't think DWP do either!), the knock on effect the current system has for disabled people and their Carers!
So just what has gone wrong?
Well the 'invitation to change over from DLA to PIP' that one you just can't refuse! Came in the post.Within 48 hours, Coo's seizure activity flew right off the scale!
 It's been a very trying time for us both.
While Coo remains so stressed, we have been unable to stabilise his seizures so we're basically stuck at home for the time being but at least we're busy! Between filling in a 50 page PIP form (with arthritic painful hands I might add!), photocopying forty pages of seizure diary info and another forty odd pages of Coo's assessment of needs, next the power of attorney papers and lastly his ten page registration info from our doctors surgery, it's been tough!
#H3...Hanging on in there...
We're hoping by giving them all the information they need, maybe, just maybe, sense will prevail and Coo and I will be spared the further stress of a face to face interview. Past experience sadly tells us this attempt could be unsuccessful but we can but try! Who knows, they may listen!
One thing is for sure, we must stick together, shout loud when they get it wrong and ultimately, we must find a better way than the soul destroying system we have now. It's expensive to administer, ineffective and so unnecessary in so many cases!
I just hope for us, it all ends sooner rather than later and if you're currently in the same boat please find someone to take a turn and help you paddle!
Stay strong.
Maz x

Tuesday, 15 November 2016

Carers, Self Directed Support, Parliament and 'the bucket man'

Hi guys I've not blogged much recently.
My fingers still hurt pretty badly with the rheumatoid issues and I've not found software that works for me - I guess they software companies haven't mastered understanding the Scottish west coast dialect...yet! lol
So just what's been happening? 
Well, Coo took a bit of a tumble last month, he had some major seizure activity, his blood drug levels were off the scale again and in the end a chest infection was to blame!
We dug out the hard hats and flak jackets, waited out the storm and just hung on in there and after a week back in anti-bio-land, things slowly improved...yeah, he's back on the up and it was just in time!

The Hydro and the Bucket man...
Thanks to our SDS (Self Directed Support) care package, Coo and I managed to cross something big off our bucket list! We were so excited about this one and it couldn't have come at a better time! We had both been so poorly recently and it was a bit touch and go but there was no way we were gonna miss the chance to see Jean Michel Jarre on his one night only spectacular show at the Hydro in Glasgow (bet he's not been called a bucket man before!
What a night! What music! What a show!
We had an awesome time! Can you tell? Ok, we had to take things easy, plan and prepare and build in some rest times too but we did it! woo hoo!
Care & Support North Ayrshire
 SDS is so brilliant! When it works, it works really well and has the potential to transform lives. Things that previously were just not possible and seemed far out of reach become that much more achievable and can make lives meaningful again - it can truly be the difference between existing and living!

So just how else does SDS support both Carer and people with disabilities? 
Well, on to my wee jaunt up to Edinburgh for the Carers Parliament, our SDS funding covers the cost of replacement care and effectively frees me up to go and do things that are important to and for me!
Like speaking at the Carers Parliament, presenting at a conference and joining with others at Carers Scotland or even a wee day away on my own for a bit of respite and if it's possible to make sure our Carer voices are heard too...then job's a good 'un!

I truly believe it's only by really working together we can ever get things right for Carers and Self Directed Support is only the first step but it can be a big leap in the right direction!
Maz x

Wednesday, 14 September 2016

Carers health, Consultations and caring...

Hi guys, what a busy time it's been but where to start!
Ok, I've not been blogging recently as my finger hurt too much. I'm still coming to terms and struggling with pain and rheumatoid issues.
I seem to be bouncing from one appointment to another be it University Hospital Crosshouse, Ayrshire Central or even the latest onslaught... podiatry at Biggart!
Coo seems to be helping me almost as much as I help him now but we're coping - life has a way of just going on and finding a way doesn't it?
New Social Security System...
Anyways I'm keeping busy as always! Lol...I've been working with the Scottish Parliament again, this time it's around Scotland's new Social Security system  -incidently I  like the shift away from calling it 'Welfare'  I campaigned for that as I've never liked that term, it has too many negatives attached to it now!
Being a Carer rep. on our Health and Social Care Partnership, I agreed to be involved with this Consultation as I honestly feel it's just so important that Carers voices are heard...we are at the sharp end and if this is going to work real people who have both good and bad experience of the current system need to be involved and share how things really are out there!
Will it make a difference? 
I sure hope so...
Carers are not unemployed! We're very much employed working harder, longer hours and in most cases with very little support! There must be a better way and we must all help build it!

Coo's still struggling with seizure activity, its like we're stuck on that roller coaster ride and no sooner do things begin to settle but we're off again! At least we have help with our SDS (Self Directed Support) in place so even though I'm  feeling poorly with the RA symptoms I'm still getting some much needed sleep and keeping going too. Without this much needed support things would be a whole lot worse that's for sure!

Take care and stay strong.
Maz x

Wednesday, 13 July 2016

Carer and Cared for Roller-coaster ride, Royal adventures too...

Hi guys it's been a busy month since I last blogged and there's been some real highs and lows...
It's a bit like that Carer roller-coaster ride again...
My own health is still problematic at best, thank God we have our SDS - (Self Directed Support) budget in place! I've been using it for additional care hours to keep us ticking along while things are so unsettled and it seems at the moment I've more appointments than Coo and that's a big shift around for us!
Okay, the Rheumatoid Arthritis is a little bit better, well the swelling is still going down but the pain is still pretty much on the high side and I've developed some nasty side effects from the drugs so...things are changing again.
I'm moving from tablets to injections and I'm not quite sure how I feel about that cap it all our beloved GP is retiring soon.
God knows how I feel about that too - he's got us through numerous medical muddles over the last twenty-five years and with a hug and a smile too!

I know there are other good doctors in our practice and we will be fine but we will miss him so much, I'm tearing up just thinking about it all!

Meanwhile, Coo's taken a bit of a battering too this month, his drug level spiked way out the safe zone and things were dire back up around 20 odd seizures a night and totally shattered and struggling all the time. AEDs (Anti Epilepsy Drugs) reduced a little...effect? A lot! Things quickly spun out of control again and we were in a real struggle we couldn't find the middle ground - time for the Neuro!
He's a cool guy, very patient, listens to Coo and sorts a plan of action - we're still in the middle of this latest AED see-saw but I'm hopeful we're coming back on the up!

They've been pretty low points this month so time for a high point...
We've been Travelodge-ing it again! lol
We were invited to the Queen's Garden Party in Edinburgh last week so we were Edinburgh bound for a few days and here we both are at Holyrood Palace...

It was a bit touch and go, if we'd make it and a bit of a struggle getting things all sorted but we did and we had such a lovely time.
The rain stayed off, the food was tasty and the whole setting was stunning!
We managed a wee visit to Gladstone's Land on the Royal Mile and The Georgian House too - in fact we had a brilliant wee break away in our Capital City - I'm so glad we got to go as it's given us both a bit of a lift!

Stay strong friends, let's hope for some more settled times too!
Maz x