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.
((hugs))
Maz x

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!
(((hugs)))
Maz x

Carers health, Consultations and caring...

Hi guys, what a busy time it's been but where to start!
Health...
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!


Caring...
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.
((hugs))
Maz x

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...
Me...
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 and...to 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!


Coo...
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!
(((hugs)))
Maz x

#CarersWeek Time outs and Troubles...

Hi guys, it's Carers Week!
So far I've managed a wee trip up to Glasgow Science Centre with my wee Three Towns Carers. They were so kind and offered us a fully supported trip! Woo hoo - result!
I've a historic walk planned for tomorrow around old Irvine's Harbour area which sounds good too so that's the fun bit...what's the troubles then?

All those balls, juggling again...

Well, I've already been at a meeting yesterday with our PPF (Patient Participation Forum) and I've another today - a follow-up one and I agreed to at the last minute! It's on shaping services for older people and complex needs and I've another stacked up for tomorrow with the Health & Social Care 'Performance and Audit'! All very valuable and all equally important and in theory do-able but and here's the rub...Coo has taken another tumble!
I should have saw it coming, his AED's (Anti Epilepsy Drugs) were too high in his system two weeks ago so he's had to reduce the dose. Now all seemed fine, well fine for Coo that is, around 10 seizures a night but last night's been a bit of a trial! He's seized every 20 minutes since two a.m. and...of all weeks, it would have to be this one - Carers Week, where I'm a bit stretched as it is!
Typical how Caring kinda gets in the way and just when you think you have it ticking along and manageable? Bang! Something happens to remind you again, just how fragile the balancing act all really is!

Aw well, it is what it is!
At least I have some support in place. Our SDS (Self Directed Support) Care Package, does ensure I have some sleep and additional respite care to at least enable me to function and continue mostly as planned so I will make my meetings and most of the fun stuff that's important too!
Gone are the days where it felt the whole world's cancelled and just staying home was the order of the day!
Now-a-days, Looby comes to keep Coo company and life goes on!

As for my own health hassles?  More bloods tomorrow! You gotta see the funny side...His 'n' Hers blood test appointments?!? That's a whole new area- even for us!lol
So the health hassles/self management? Still a work in progress but...I've parked them for this week! lol
Anyway, keep strong, I hope you have some support where you are and are managing to find some Carer week fun too!
(((hugs)))
Maz x

Respite, Anti-bio-land, Carer health and juggling all those balls...

Hi guys, I've not posted in a wee while, my fingers were hurting so much but I think at last...we've turned a corner - woo hoo - result!
Where to start? 
Ok Carer Health...

All those proverbial balls juggling around...
I at last got a firm diagnosis and it's taken me a wee bit of time to get my head fully around it too!
I have Rheumatoid Arthritis - there it is I've said it! How do I feel? Well, firstly my thoughts were, as a Carer, how will I cope with Coo, will it progress and can it be managed? I have to say the Rheumatologist I saw at University Crosshouse Hospital, was patient and kind, explained options and gave me leaflets on the day  - thank you! That made such a difference! Kinda helped me get my head around things quicker and saved me trawling the net trying to find the most appropriate information - another result!

It's unlike me to run away from things for long, it's not in my nature so I researched the information from the hospital, had a look at some NHS info. and picked an arthritis resource site for good measure! lol

Cared for becomes Carer...
I gotta say, it's a total mind-shift going from Carer to Service User...We're ok but it's been an adjustment that's for sure! Anyhow, I've started the meds and been getting my bloods done every two weeks and things seem to be going well - thankfully!
Coo's been taking it all in his stride, he's been back in anti-bio-land again with an infection and seizure increase but on the whole things are a bit more settled so we're fine!

Respite for us both...
I'm so glad our SDS (Self Directed Support), is so flexible.
Proper support makes all the difference in the world so with that in mind and things settling down for us a little, we took off up the coast for a wee respite break! By gosh we were both needing a change of scene in a restful location and they don't come much more restful and restorative than this do they?   
Wemyss Bay...

For us it ticks all the boxes for a wee home from home holed up and chilling! It's not too far away - if there's problems we can get home fairly quickly and on the plus side it's close enough that Looby and the babies can visit for a bit too (meaning, she can take over for a bit and I can still get a sleep too - massive plus!) and we can spend some quality family time and lastly? It's so peaceful and beautiful too so..win win! Yet another result!

We're both back, chilled, happy and ready to go again!
and as for all those balls bouncing in the air...I guess, for now, it's ...Happy juggling!
(((hugs)))
Maz x

Carers, Hospitals & Civic Awards grand night out...

Hi guys, what a time it's been here!
Ok, where to start...

Results of sorts..
Guess what? The results are in and I don't have Carpal Tunnel Syndrome at all - I have all the same symptoms but it 'aint Carpal Tunnel! The orthopaedic Surgeon says his opinion of December has not altered - it's a Rheumatoid flare up so hopefully I will have some news soon as after a failed referral...at last I will see a Rheumatologist this week! I'm at the point where I don't really care anymore which label is attached, I just want an end to all the pain everywhere and to be able to use my hands properly again.
All my usual coping mechanisms are out of reach. My sewing machine is now stowed in the cupboard out of sight - Jessie's half made Dora Explorer quilt is still sitting from October! - and my harp sits just waiting to be strummed again.
I guess I'm just a bit fed up of the whole business now but I've not lost all hope yet!
To cap it all, Coo is poorly, he's refused hospital so we're just keeping an eye on things and living quietly at home for now. The COPD (chronic obstructive pulmonary disease), has kicked in and his cough is awful, he has a temperature and yet another seizure increase too so between the two of us it's...happy days!
It's amazing what you can cope with when you have too but enough of that onto...
My grand night out! lol
It was on with the little black dress, the heely shoes and lots of lippy last week!

I was invited to our Provost Joan's 'Civic Pride Awards' ceremony. 
It's the one my wee 'Three Towns Carers 'won two years ago!
No pressure this time though as I was there as a guest so a night out, friendly company, a lovely dinner and the evening raised £20,000 for charities too!
What a great night and a happy wee diversion in what's been a difficult time!

At times like these, I'm so glad our SDS (Self Directed Support) is so flexible, it means when I have the chance to get out and enjoy something like this it's achievable but before SDS I'd have had to say thanks and decline. Just shows the difference proper support really can make!
The main thing is...We live to fight another day!

(((hugs)))
Maz x

still hanging on in there...

Hi guys, I've not been posting much recently we've had health hassles on all fronts!
Coo is still poorly so we're living quietly for the moment and my wrist/arm/shoulder pain is rumbling on and I gotta say, I'm now getting just a tad fed-up with the whole thing!
I tried to chase up my Rheumatology appointment  (I was referred in December), just to say I'd accept a cancellation and guess what?

I have no referral -apparently it got lost in transit! Here in Ayrshire & Arran, Consultant referrals are paper based -or snail mail to you and I!- between our two local hospitals Crosshouse & Ayr and mine? well, it got lost!
I have to say I'm not impressed with this latest development and I took to twitter and said so with a #unimpressed too!
I'm  hopeful, now I've alerted them to the fact it is indeed 'lost' they will get on and sort it out and an appointment will arrive soon! I guess we shall see!

Carers Scotland...
Health issues aside, I've still been busy with the Carers Scotland Committee, especially now Scotland's new Carers Bill  is at last making it's mark in the parliament!

This bill has the potential to make things so much better for Scotland's Carers!
We just need to be strong and make sure it delivers!


Health & Social Care Integration...
Isn't it ironic, I'm so committed to our Health and Social Care Partnership here in Ayrshire & Arran that I sit on the board and always speak out strongly for our Carers and...my own recent NHS experience has been so very less than expected?!? Disappointed? Yes...but not down and out...yet!

Stay strong friends!
(((hugs)))
Maz x

When the Carer is ill...

Hi guys, I'm checking in and updating just what's been going on!
Firstly excuse my tardiness... Happy New Year!

We had a lovely Christmas Coo and I despite health struggles for us both (we spent Christmas eve in Glasgow's Southern General) and have since been living quietly at home.
I'm beginning to find out just what does happen when the Carer is ill and it's not easy that's for sure!
For one thing the caring continues, the person you care for doesn't just magically improve just because you find yourself on the other side of the caring equation for a change! That said, well, somehow you both try to adjust and then begins a process of prioritising, just what needs to be done and what can be left for another day and there in lies the rub!

So just what happened?

Okay, the Carpal Tunnel Syndrome developed and hurt...then made way for another syndrome of De Quervains and then made way for yet another and the long and the short of it is, after seven months I did get to see a surgeon who promptly called for more tests and threw the third and final diagnosis into the mix...
Rheumatiod Arthritis! 
My wrist, hand and arm is now totally swollen, it's been in splints and a sling since October and to top it all, I'm using more pain meds and steroids than I even thought possible and still it hurts!
I was hopeful this was a temporary issue but as time has continued and one months followed another, I'm beginning to feel this is not going away anytime soon. So what now?

Coo is coping with the changes, well, he's doing okay...he's stressed, struggling and trying so desperately to help me too, I guess we're kinda helping each other with care just in so many very differing ways!
Thankfully, we still have a supportive care package in place. The SDS (Self Directed Support), means we have some help, I'm still getting some sleep each week and a bit of time out too so it's kinda acting like the proverbial glue holding things together and keeping us going for now.

I've not totally given up the hope it'll all work out in the end - I guess it's the Carer spirit kicking in, that little bit of you that murmurs in the dark that everything will be okay.

Stay strong and use the supports you find around you as will I!
(((hugs)))
Maz x