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Saturday, 24 March 2018

Caring magazine and us...

Hi guys just incase you missed it last time around...
I thought I'd share our big interview!
We were asked by Caring Magazine  - well I was, Coo just came along for the ride! lol
 Caring Magazine issue 46

It was originally going to be a wee piece about North Ayrshire's brilliant 'Carers Appreciation card'  and it is but it kinda took arms and legs and ended up covering a whole lot more and a few pages long...we're on pages 4 - 7 and with some happy pics included too!

SDS (Self directed support) has made such a difference for us, it helped open doors that were previously tightly closed. Time for respite both together and some time apart, time out for training and even time just to sleep and turn off from caring for just a little while, knowing things will be ok.

Help for carers is out there!
It's just knowing where to find and ultimately access it that's the tricky bit and by pushing and sharing information, we can all try and get a better deal for carers!
Keep strong friends as will I!
Maz x

Friday, 23 March 2018

Back #stronger #sad still #caring...

Hi guys it's been so long since I blogged I almost gave up!
It's been such a difficult few months.
I got sick, my Rheumatoid Arthritis spiralled and I picked up yet another diagnosis (Fibromyalgia) to add to the mix. Coo got sick  - viral which increased his seizure level and he went back on that AED (anti epilepsy drug) see-saw again. you know the one, too much drug in the system major seizure activity and too little? Ditto!
Worst of all, my lovely 'fit as a flea' mum got sick and there's no easy way of sharing sad mum died just after Christmas. My rock. The one who helped me through when I struggled and things were so desperately difficult, was gone and in a heartbeat things changed forever.
We supported one another, my dad, sisters, Coo and I but it's all been so very difficult.
How do you begin to recover from such a gut wrenching blow? Honestly? I still don't really know. The practical side of me took over and the things that needed done, were done but all the feelings and hurt were jammed in a box, tied up tight with a big bow and locked away for another day and I'm unsure if I will ever open that box an look inside!
Being a carer is like that, well it is for me, no matter how you feel or what is happening in life, the business of caring continues, it must and so it does...regardless! I think that's how you cope with all those issues that caring brings or who knows, maybe it's self preservation #carer style! I doubt it's particularly healthy but it gets us by in the mean times!
 Carers support
I still managed to support #carers and bless them, all my wee Three Towns Carer friends came to support me through mum's funeral - I felt truly blessed! Caring for dad, mum was a three towner too and with some bereaved themselves, it couldn't have been easy.
I think that's the benefit and real value of community groups like ours, that peer support and love shared when people really need to know they're not alone!
I'm sharing this pic as my dad always thought it was hilarious I took mum demo-ing in her seventies but she was game for anything really and the state of what is...just us makes me smile...I can still hear her shouting 'axe the tax' mega lols

When we work together, we truly are #buildingcaringcommunities
Maz x

Sunday, 22 October 2017

#carers health caring coping and SDS....

Hi guys, I blinked and summer was all gone and I'm guessing I'm not the only carer that's happened to!

Over the summer, I've spent more time at hospital appointments than Coo and I'm still adjusting to this set-up. from Rheumatology and Podiatry to Orthotics, Neurology for Coo and countless pharmacy visits in between, we've hit the lot!
Honestly being poorly and caring too is hard for everyone. I'm finding that quite honestly - Rheumatoid Arthritis kinda sucks!

Just who cares for the carer...
Well, I'm finding out too, that's a good question and it has many differing views and answers...depending where you live! We're lucky, here in North Ayrshire our council fully supported the aims and objectives of  SDS (self directed support) and although there isn't an unending pot of money, they tried to support carers and the people they care for. Here, SDS wasn't used as a cost cutting exercise, it was used with a genuine will to help and thankfully #carers have benefitted from the process!
So yes, I've been poorly this year and yes I'm still caring a real lot but the support we have in place makes it manageable. It means I can still get out for a bit, go to some meetings and continue to do what's important to and for me so even with the current bout of ill health, that's made everything so much more easier for us both and for that we're truly thankful!

Coo's still bouncing around on that AED (anti epilepsy drug) see saw. Too much drug in his system means more seizures and too little? more of the's become so tiring for us both and we've hit a new low - his & hers blood tests every two weeks - #scunnered but we're hanging on in there!
#carers health... 

Please, if you haven't already...go get your flu jab! Carers do get them free from their GP so don't take no for an answer get it sorted! Trust me it's not that bad and could save a whole lot of  groaning and grief over winter and I promise the jab isn't anywhere near as big as this one! mega lols!

Just for fun and even though things were difficult and it took a lot of energy and planning we got away for a wee trip up to Glasgow to another concert!
It was totally awesome, really rather wonderful - We loved it...can you tell! mega lols After the concert we had a wee sleepover to recover and best of all?
We came back all rested and happy and ready to carry on so job's a good un!
Onwards and upwards!
Maz x

Sunday, 16 July 2017

DWP Stress and health hassles - the peace didn't last long!

Hi guys, what a mess this month has been!
Remember a few weeks back when I blogged about how our DWP hassles were over for a while at least? Well, the reprieve lasted four weeks exactly and we're back on that treadmill yet again!
ESA have come calling...Arrrrrgggghh!
Honestly and in the circumstances, what is the point of even more assessments and only weeks apart?  This must be costing a fortune in real terms processing costs and I'm less than impressed can you tell?

So just what has gone wrong?
Well, the issues are two-fold!
1. DWP don't share information the departments don't speak to one another is one issue and that needs resolving! The continual vicious circle of  DWP's making people relive their disability with frequent regularity, serves and achieves no positive purpose and has to stop - we're all getting wearier and sicker throughout this abysmal process!
- and the latest incompetent mess ...  
2. Our GP practice which is now directly managed by NHS Ayrshire & Arran and is mostly staffed with locum doctors, has not returned any and I mean -ANY- DWP paperwork since April!
The DWP's current health care assessors have confirmed an assessment is now imminent for Coo as the GP did not respond or return the necessary paperwork! Just how many patients have been failed here? How many have been put through additional stress and assessments unnecessarily? Totally unacceptable situation and all so avoidable!

Coo's stress levels are up and his seizure activity is way off the scale - we got a call from ADOC (our out of hours NHS services), his drug levels have spiked and things are difficult so I reckon the last thing we needed was another injection of yet more stress in the mix! - it's just not good enough!
Typical for Carers - it's all more work and more stress but it has to be done so I've contacted Dr Tyagi - (Coo's Neurologist), who's a great guy and always supportive so least we've got the difficult health bit sorted out, well, we've got a plan anyhow!
I've asked my Health & Social Care Partnership to try and improve this situation quickly and I've a phone consultation with our practice manager- this won't help us this time around but it hopefully should help other patients caught up in this right royal mess - when there are issues, we need to keep working together!

I often blog that we are all in the same boat so must take turns to paddle but it seems we've been paddling really hard this last few months Coo and I, dear God, we must surely be due a break from the oars soon!

Stay strong and keep paddling!
Maz x

Thursday, 29 June 2017

PIP, Carers Week, SDS & IJB...

Hi guys, it's such a while since I blogged, my hands still hurt when typing and I've not found software that fully understands my Scottish twang...yet! lol

So what's been happening?
Well, our hassles with DWP and PIP (personal independence payments) are over - well for a while at least! An assessor visited our home to save further disruption and upset for Coo and seemed to understand the issues of coping with such complex needs and thankfully, things went smoothly this time. It's such a relief it's finally over as we've both been so stressed with this process hanging over us for the last few months. Hopefully things will calm down a little now and we can get back to normal...well normal for us that is! lol

Carers Week...
Carers Week is easier for me to enjoy these days SDS (Self Directed Support) being in place makes the world of difference! Regardless of how Coo is feeling (within reason!) my plans seldom need to be cancelled and if I want to pop over to Irvine to the Carers Centre for a 'posh tea party' or a wander in the park it's ok...I can go and so I did!

North Ayrshire Carers Centre Irvine. (Facebook)

Here are some Three Towns Carers with two of our newly elected local Councillors Jean and Davina...they like a wee posh cuppa too!

Media Interview...
Look out for me in Caring Magazine next time! I gave an interview on North Ayrshire's Carers Appreciation card - it's a wee thank you for carers and among other things, gets them some discounts on local goods and services. The interview started out about our carer card and then grew arms and legs as I shared some of Coo and I's journey so it'll be interesting to see how it all comes out in the wash or the print for that matter! mega lols

IJB, Health and Social Care Partnership...

After all the recent changes, campaigning and elections, we welcomed new members's all hands on deck and back to work for our IJB (Integrated Joint Board).
 Our new Carers Champion..
Councillor Christina Larsen is our new North Ayrshire Carers Champion and has joined us on the IJB so with new councillors and a champion who are carers themselves, we should have the best of chances in making sure carers voices are heard! I honestly feel, it's only by working together we can really achieve change for all carers!
Keep strong!
Maz x

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