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Monday, 28 October 2019

Still Caring, involved, struggling and coping!

Hi guys, it's been a while hasn't it!
I'm still hanging on in there - I seldom type now as the Rheumatoid Arthritis takes over but I'm still in there alive kicking and still caring!

Caring has increased, for us both... 

Coo's seizure pattern is erratic at best but we manage and just take each day as it comes.

Steadily my rheumatoid issues have taken over and Coo is helping me with buttons, fasteners, knobs, all the fiddly things and...well you get the picture and I'm still managing around all the seizure activity - it is what it is but I sometimes wonder just who is caring for who!

Our SDS care package is very much life changing - I can still get out, be involved with meetings and do things that are important to and for me and I think that's the main advantage of jumping through all the hoops to set it up in the first place!

Health and Social Care...
We had a paper at our last meeting - HSCP (Health and Social Care Partnership) on carers and short breaks and the new carers support plan and as people find out more about it and things are agreed with carers - isn't it just great that the carer rep is able to be fully involved as SDS (Self Directed Support) is already in place - isn't that how it should be everywhere? I know it isn't but it should be!

I still feel it's only by truly working together we can really change things for carers and I guess that's why I try to keep my pledge and make sure carers voices are heard!
Keep strong!
Maz x

Sunday, 10 March 2019

Blogging, caring, surviving & SDS too

Hi guys, it's been a while since I've blogged, things have changed but I'm pretty much ok!
Things got complicated, I got ill, Coo stayed much the same and I took on more responsiblity with supporting my dad...phew!
Who carers for the carer?
Well, the short answer is usually nobody rushes in to pick up the care load when you - the carer - is ill and that is pretty much an awful position to be in - we've been there before and it's no fun that's for sure but this time it was different!
Our SDS (Self Directed Support) kicked in pretty much seamlessly, Looby came to stay for a few days while I recovered (I had a chest infection that didn't go and kicked off the rheumatoid issues!). What a difference it made to concentrate on getting better and not on worrying about just how we'd cope and I'd keep on caring for Coo. I just hope other carers give SDS a chance as when it works well, it can be life changingly good!
While things have been so busy and stressed these last few months, I've stayed in contact with my local carer group.

Honestly when it comes to finding support, local groups are really the first port of call. Willing to share information and friendship, they can be such a Godsend in times of struggle so if you haven't already, look one up and give them a go! What have you got to lose?

Coo's seizure activity is still, how shall I put it...challenging.
We recently found out he has some ongoing white cell and hemoglobin issues so yet more referrals, hospitals and hassles in store!
Main thing is we're alive and kicking, not giving up anytime soon and still smiling!
You keep strong and we'll both keep rolling with the punches!
((hugs)) Maz x

Sunday, 16 September 2018

Still caring, challenging and carrying on...

Hi guys, it's been months since I blogged!
I guess I kinda fell off the radar a bit when my mum died, I kept going throught the motions caring for Coo and picking up the support for my dad too and I guess, something had to give!
I don't think I really dealt with my grief, well how do you, where do you even begin? especially whist caring for someone else already and taking on even more caring responsiblities!
Carer Health
I suppose it's just taken some time to regroup but I'm doing ok!
My own health took a bit of a tumble with everything that's happened.

My Rheumatiod issues have continued and I'm swallowing pills daily (more than Coo - which I never even thought possible!) and jabbing a Metoject pen every week - but I think I'm coming back up at last!

Self Directed Support
Our SDS has enabled me to have much needed support, timeout to grieve and just enable me to find my way again and keep going and for that I'm eternally thankful. I wish it were so for all carers but sadly, it still seems a bit of a post code lottery where SDS is concerned but I'm still hopeful this will change moving forwards!

Carer Challenges 
Even during this difficult time, I've needed to stay involved with Carers Scotland and my local Health & Social Care Partnership I like to make sure #carers voices are heard and wherever possible I do! lol

I'm so heartened Scotland's shiney new Social Security is shaping up to be a more caring agency than the one we have prevously endured with DWP (Department of Work and Pensions).

I have never agreed the best way forward was Austerity, sigma and fear and with a strap line of Dignity, Fairness and Respect, this has to be a major improvement and that being said, I've been interviewed for The National newspaper, on the new Carers Allowance Supplement coming to those carers in Scotland who currently receiving Carers Allowance. Whilst this is a huge step in the right direction, there remains so much to still be done - Carers work...and they work really hard, with very little support with the main 3 H's...Help - Health - Holidays!
Let's start making them a priority for all our Carers!

Keep strong as will I
Maz x

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