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

Carer Struggles, health and hassles...

Hi guys, it's been one heck of a week!
It's still a hard hat and flak jacket time here!
I've not posted much recently as my wrist problems from recent months have escalated!
The Carpal Tunnel Syndrome diagnosis still stands but one top of that, last week my GP diagnosed De Quervains Syndrome too so I had a cortisone injection to try and help relieve things a little.

This week my long awaited appointment with the surgeon finally arrived - (I was refered in June!) - so just how did it go? Well, ok in some respects but not so in others. While the Carpal Tunnel issue is present, he will wait for further nerve conduction tests done in Glasgow before he proceeds - fine but he's thrown another diagnosis into the mix - In his opinion, my wrist is too swollen to be Carpal tunnel and De Quervains alone and looks more like Rheumatoid Arthritis. He took some blood tests and has now referred me to a Rheumatologist so yet again...we wait!
Meanwhile the caring continues!
Coo's stressed and poorly, I'm now stressed and poorly and we're caught in bit of a vicious circle! I had hope for some sight of an end or even a way forward with this and I'd kinda pinned my hopes on my visit with the surgeon yesterday. I guess, sometimes, things really just don't go to plan!
This raises the question...
Just what does happen when the Carer is ill? 

I'm finding that very little priority - if any- is given to Carers, even though they are needed to provide ongoing care for another person and usually with little support!
It's just not good enough and we really need to work on this!
I will be ok , if things deteriorate I will use the contingency funding within our SDS (Self Directed Support) Care Package, to pay for more support but other Carers are not so fortunate and if I'm kinda struggling, just how do they manage?

Stay strong friends as will I!
((hugs))
Maz x

Hard hats, flak jackets ADOC & that Carer Roller coaster...

Hi guys another difficult few days!

Caring sure is a roller coaster ride at times that's for sure!
We were out walking in the fresh air one day and the next? Struggle and strife! Coo's taken a bit of a tumble again so it's been a real struggle here.
We're back in Antibio-land!

Firstly a major cough hit and his temperature shot up, then the dreaded seizure increase kicked in. Why does it always deteriorate at the weekend, when there's no chance of seeing your own Doctor?

Any how, we sat it out and tried coping at home for kicking 48 hours intending to see our own Doctor on Monday but things were getting scary and the vomiting seizures were back - I hate them, after a bout of aspiration pneumonia, they really scare me the most - it's the noise, the choking, infact it's just everything about them really!
We no longer had a choice, we couldn't wait till Monday, it was time to get help! ADOC (Ayrshire Doctors On Call) our local out of hours services were great. They saw Coo quickly, the Doctor handled things kindly, checked him out and sorted some antibiotics - the seizure increase in almost always caused by infection!
This let us trundle on till Monday and our own beloved GP - yet more pills and potions but at last some improvement! Yeah..crisis averted and no hospital admissions this time so...result!

Things are still a bit up and down and Coo's a bit banged about with all the seizures but we are coping and we're ok - hope you're doing ok too!
(((hugs)))
Maz x

Events Review, Carena, #HSCP Engagement, Aids & Adapts...

Hi guys what a time of it we've had!
Ok, where to start! It's been busy that's for sure!

First up...
The Carena event at the Magnum Centre Irvine...
Coo was well enough to go and I thought he'd like it so...off we went! The plan was to be there around 10 o'clock but after a bad night seizure-wise it was nearer noon but we got there in the end!

So just how was it?
Busy! - over 130 stalls, from community and support groups to services and providers and all working in our own local area, who knew that many were out there all offering services and all basically just wanting to help!
This type of exhibition event is really valuable, especially for Carers as often people just don't know what is out there. Sometimes it's support from a wee local group that offers a few precious hours respite that is really all that's needed and is just enough to make caring easier and keep things going that little bit longer!

Next...
The HSCP - (Health & Social Care Partnership) Engagement Event at the Hallmark Hotel Irvine...

Firstly we were late! Coordinating half a dozen Carers from the three towns area over to Irvine was not as easy or as timely as it could have been! lol That said it was great! The members of the Three Towns Carers group who managed to get there (eventually) ranged in ages from early thirties to our Gwen at eighty-four years young! We've all been caring long term so you could say, there was a wealth of experiences to share and...share we did!

Between us we hit most of the work shops, if not all of them and we were pretty vocal on what we wanted from the partnership and just how we felt things should be!
Incidentally Carers have always wanted more joined up services where people and departments 'talk' to one another. Many is the time we have felt like that wee pinball bouncing around each and every way trying to find some help. It was never easy that's for sure! This new partnership way of working has the potential to be different, I guess we shall see!
Our Carers were well impressed with Jim and Annie's 'Fairer Scotland' workshop.
I guess, for most, with the best will in the world, finding yourself in a caring role full-time is not particularly fair! It kinda struck a chord and they really opened up about what is so unfair at the moment and their thoughts on how it could be so much better for Carers - once they started they didn't want to stop and that was just great!

Lastly...
Review of Aids and Adaptations services...
This was totally different!
An appreciative enquiry...Mmmm well, what can I say?
It was different that's for sure!
I'm more of a warts and all kinda person and like to hear a really balanced view both good practice and uplifting case studies but also I've found there's real value and balance in hearing where things have gone not so well and with Carers and services users around the table it could have been a great listening and learning experience for all, now that been said, it was still a worthwhile event!

People did share their experience and sometimes it is good to hear about where things are working well and services are delivering and helping people.
It's so important Carers and Service Users continue to be involved in every aspect of our services from planning and procurement to finance, provision and especially review! In most cases, we know what is working and how with a little bit of a tweak it could be made better too!

Health and Social Care affects and is for everyone - sometimes you just don't know that yet! An accident or illness is all it takes and then you need to find out pretty quickly just how good your local services are so if you get a chance to influence those who really can change things...grab it! I truly believe it's only by working together we can change things for the better for everyone!

Keep strong my friends as will I,
(((hugs)))
Maz x

Health & Social Care event October 19th, have your say...

Hi guys, with all the latest hustle and bustle, we're re-grouping at home for a few days!
Not being one for totally shutting down during quiet times, I'm always on the look out for interesting events locally and I've found one! It's a workshop looking at how people can input, plan and improve local services.
Our Council is pretty good on the consultation front!
They've proved it with all their SDS (Self Directed Support) work and all the welcomed input from Carers while writing the Carers Strategy so when they say they're looking for local people to come along and honestly give their views on improving services, I'm happy to be involved and extend an invitation too!

Here are the details...

Six members of my Carer group, the Three Towns Carers - (plus me!) - are going along to this event on October 19th in Irvine so if you're in our neck of the woods in North Ayrshire, why not speak up and share your experience? I know I will!

Hope to see you there so...get booking! 
(01294) 443044
(((hugs)))
Maz x