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

Scotland's 4th Carers Parliament, Carena Event...

Hi guys, what a week and it's not over yet!

Carers Parliament...
Carers from all over Scotland made their way to Edinburgh for the 4th Carers Parliament. Two Carers from each of the 73 Scottish Parliamentary constituencies attend to make sure as many Carer voices are heard as possible and this year, members of the Welsh Assembly attended too. They want to set-up their own Carers Parliament in Wales so yet again here in Scotland, with our forward thinking and ethos of working together, we have influenced and hopefully helped Carers elsewhere too - I do hope so!
What a great day it was!
Our First Minister was there

Not only to thank Carers for their contribution in our society but to inform on policy and update on the new Carers Bill currently before Parliament. It's good Carers have such a high profile forum, it's taken a long time but now Carers are involved in shaping policy and really helping change things for the better and long may it continue!

Carena...
Remember the community website I was involved with?
Well, it's going from strength to strength! Today they had a great exhibition and showcase event over 150 stalls, people, groups and organisations, offering a range of information and supports available all over North Ayrshire and it was busy, busy, busy! I wasn't working at a stall today as Coo wanted to go along and check things out for himself so we mingled, picked up some freebies and learned a thing or two!

Carena is not only a website, it's all over facebook and just about anywhere people need some information on services and community supports, offering info on anything from community events to job opportunities and more! It really is a great community resource especially for Carers or anyone who uses social services here in North Ayrshire so...go Carena!

It's been busy time but fun too and I've learned something new too - you know what they say...every day's a school day! lol
Hope you're doing ok where you are.
(((hugs)))
Maz x 

Carpal tunnel, Caring, Pledges and time out...

Hi guys, it's been a difficult month but we're still alive and kicking!

Carpal Tunnel take 2...
I'm now three months in with the Carpal Tunnel flare up and there's no sign of it letting up anytime soon. Good news is I've now been to hospital and bad news? I need referred to Glasgow...I guess things are moving - not sure in which direction yet...but they should be moving! lol

Caring, struggles and SDS...

Meanwhile caring with Coo is more difficult at the moment, moving and handling and the general wear and tear coping with such a high level of seizure activity all the time is so wearing and so painful. Thank goodness for our SDS (Self Directed Support), we used some of our budget to buy an adjustable bed to help cope with these latest struggles and I'm so glad we did, lord alone knows how we'd have coped this last few months without it!

Hard hat time again... 

Coo is still struggling on.
His blood results are fine this month, on the high side but fine. We were struggling to work out just why he has yet another increase in seizures, mood swings and struggles, then lo-and-behold he now has a temperature and raging cold - mystery solved!
It's now a case of battening down the hatches, getting that hard hat out again and holing up at home for a while!

Keeping my pledge...
Last year at Tommy's wonderful Carers Concert in Glasgow. I made a pledge to wherever possible, make sure Carers voices are heard...and I do wherever and whenever I can so even with the current care issues (and health ones!) I still manage to make it out to IJB (Integrated Joint Board Health and Social Care), the Carers Advisory and my Three Towns Carers group. The SDS package we have in place, makes it possible for me to contribute and continue with things I find important and rewarding and I think that kinda keeps me going to!

Carers time out... 

I used to feel trapped when these enforced times at home came around but with the support in place, I still manage to get out and about. This morning I managed to meet the other Carers at the Rowantree for a wee breakfast meeting and a look around the garden centre. Seems a little thing but infact it's huge not having to cancel things as Coo's poorly - changed days and happier times too and on that note I'll end!

We're ok, hope you're doing ok where you are too!
(((hugs)))
Maz x