Hi guys, well 2020 hasn't gone swell has it!

Hi guys, 2020 has been pretty awful for us but we're surviving...just!
Dad...
My Dad went out to his usual podiatry appointment in March and took a stroke. It was a mad dash to our local hospital in Kilmarnock but with each passing minute it was becoming more and more apparent he wasn't going to make it. Originally I was told it would be hours but the wee soul clung to life for another eight sad, painful, days. My sisters live in England and Spain so at least they had time to see him.

By the end of the eighth day we were just praying of a blessed release for him. He died on a sunny St. Joseph's day (March 19th) which is a comfort as St. Joseph is the patron saint of those at their end of life, we're Catholic if you hadn't guessed! I've taken some comfort in the fact he's back with my wee Mammy now but it's all still a bit raw.
SDS...
We were lucky as our SDS (Self Directed Support) care package, kicked in seamlessly so I didn't need to worry about care for Coo. Looby our P.A. came to stay with him to allow me to stay over at hospital with my Dad on those last few precious days and what a weight off my shoulders that was!
We thought the worst had passed but oh my we were in for a bit of a rough ride -
A Lockdown funeral...
Lockdown kicked in didn't it. We weren't even sure if Dad's funeral would be able to go ahead at all. We moved fast, saw our priest and Dad ,being Dad had a funeral plan all arranged with our local undertaker so thankfully after much tears and troubles - half the stuff he'd arranged in his plan could not now happen due to COVID-19 restrictions - but we did at least get a mass!

The very last one in our church before they totally closed down but no hugs and no sitting together, we couldn't even get in the family car! Immediate family only, no cords for family either, the poor cemetery workers laid Dad into his final resting place. It was all so different from two years earlier, where Mammy had a night of rest in our church, a full congregation of family and friends and a lovely funeral tea to share with our family but Dad would have understood. We did our best and at least he got his mass!
Isolating...
Fast forward four months and we're still in limbo. We're both still Isolating!
Like lots of other people with disabilities COVID-19 has reeked havoc! We're both high risk as I have RA (Rheumatiod Arthritis) I'm immune suppressed and Coo has COPD and his Epilepsy? Well any infection or raised temperature spikes his seizures crazy - he won't risk the hell of infection and seizure city he had some years back with pneumonia so we're in for the duration!

All in all 2020 has been a pretty traumatic time but with things in Scotland seeming to be heading in the right direction with suppressing the virus, hopefully we'll be coming out the other side sooner rather than later!
Lastly, a huge thank you to our wonderful NHS!

Thanks...
Dad was in the Acute Stroke Unit in Crosshouse hospital Kilmarnock and the staff were wonderful, caring and kindness itself. Without their attentiveness we would have found ourselves in such a painful and more difficult position. These caring staff really made a huge difference at what was such a very difficult time. Bless them.

Stay strong friends, never was it truer than now, only by working together we can really help one another!
Keep safe.
((hugs))
Maz x

Decisions, surgery, caring and coping...

Hi guys, I turned around to draw breath and January was all gone!
How have we faired? Not so well, already 2020 is proving challenging! So far it's been cancelled meetings, appointments galore and enforced time at home.
Treatment decisions...
Coo needed surgery. He wasn't suitable for a general anaesthetic due to all the sleep seizure activity - he has NFLE (Nocturnal Frontal Lobe Epilepsy), effectively sleep seizures so after discussion we opted for a spinal injection instead but in the end, on the day and after discussion with a very kindly surgeon, Coo opted to be brave and go with a local anaesthetic instead! Offt brave guy!
Surgery...

I gotta say, the staff were brilliant at Ayr Hospital, all the arrangements we'd asked for, additional space, the fact I'd need to stay close to keep him calm and also awake as he was stressed and shattered from the additional seizure activity the night before. The last thing we wanted was him left on his own, falling asleep and seizing on the ward!
I can only thank the ward staff, they took everything we said on board, really listened to us and the result was a far easier and less stressful experience for us both!
Well done getting it right for patients and carers NHS Ayrshire & Arran
Caring...

We got home, battened down the hatches and prepared for the night ahead's seizure activity. Just hoping he wouldn't bang around too much and burst any stitches and we'd cope OK until morning.
I think that's probably the worse bit for carers, it's the stress and the second guessing and the always needing to keep one step ahead in a crisis and just when you think you're home and dry? Bang, a big fat spanner in the works...Coo went into shock, he got the shakes, nausea and his temperature dropped to 35.4C and he felt really poorly.
I know from lots of experience when to call for NHS backup and this was one of those times.

Thankfully with some medical advice and some reassurance too, we coped at home - Coo did not want to go through yet another hospital admission, I wasn't keen either and I felt comfortable to monitor things and just wait it out.
A big cosy blanket, lot's of peace and quiet and a wee cuppa and slowly things stabilised again and we all lived to fight another day!

Caring is never easy that's for sure but it's never boring either! Here's hoping for a more settled February!
Keep strong
((hugs))
Maz x

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!
((hugs))
Maz x

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 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

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

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

IJB, Carer woes and Island views...

Hi guys - what a week we've had!

Firstly the tough stuff...
Carpal tunnel sure is a pain!
It's still kicking me three week on, even with the physio's help and a range of supports and splints! I'm hopeful it will go soon but meantime I've found a...girlie pink splint and I'm just kinda riding it out!

IJB...
I've been busy too! It was Health and Social Care IJB (Integrated Joint Board) time again this week. It's where members from throughout local Council, NHS and third sector, come together to discuss and agree our next step forward.
Here in North Ayrshire, Carers and service users take their place on the board too and rightly so!

It's important we are all on the same page as decisions made at IJB affect peoples lives so it's only proper they are represented on the board!

Carer woes...
It's been real tough these last few weeks. Coo's been bouncing around a bit and I'm sure we're back on that AED (Anti Epilepsy Drug) see-saw once again. Problem is, he's had a bit of a sniffle and a viral infection going on so there was no point testing his bloods as all those issues just skew the results! They are definitely getting done this week - he's so sleepy, there's an increase in seizures and the dreaded mood swings have returned, sure sign the serum levels are a bit high. One things for sure...somethings gotta give soon!
 
On a sunnier note...
I guess we're blessed where we live! When it rains it sure pours but when the weather is fine? Well, see for yourself! With a view like this who couldn't be happy?

I love living on the coast! The island view always calms and cheers me in equal measure and on that happy note I'll sign off!
(((hugs)))
Maz x

Carers to Top it all - health issues and hassles...

Hi guys what a week it turned out to be for us!

Health issues galore here!
Me first...
It seems on top of the neck problems, neuropathic pain, wear and tear and degenerative disc of recent months, I've now developed Carpal Tunnel Syndrome.

I've had wrist pain on and off for ages and I did speak to our GP about it around two years ago too. He advised me to use a wrist support, rest it and if it didn't go away, come back and see him - it went away and so did I! lol Next time it hung around for a few days again too but this time, despite resting it and using an ugly splint support, it's been over a week and no joy so...I think I'll go see our GP now and deal with it!
Coo's up next...
Ok it's not as if Coo needs another illness, well to be fair, who does!
In recent years, Coo's always been prone to coughs and chest infections after a nasty bout with Aspiration Pneumonia during an increased and prolonged seizure activity period. Anyways, he's had a persistent cough for months now so after yet more tests his latest xrays show he has COPD - (chronic obstructive pulmonary disease).
I know he's been more 'gurgley and phlegmy' during seizures but I thought it was maybe yet another chest infection brewing - seems this is all par for the course with COPD and in our case seizures thrown in the mix!
We're just kinda regrouping a little and getting our heads around things. It'll be ok!
In happier news...
Wee Jessie's latest surgery for Hip Dyspalsia went well - she's up and around and doing grand!
and her wee sister's hip scan went well - surgeon will keep an eye but...no more harness or Spicas for Islay! woo hoo! Thank goodness for that!
and to finish on a sunny note...

The sun came out this week, both Coo and I felt good on Wednesday too so we got out for a wee cycle! Yeah!
A good day and both hale and hearty? What a blessing!



We're doing ok and I hope you are too!
(((hugs)))
Maz x

Advisory Group, Carer Newspaper & 3T Carers ...

Hi guys, it's been a mixed bag kinda week...again!

Coo's been poorly again and we've mostly been home, although I did manage out to my meeting on Wednesday!
The Carers Advisory Group...

This is the group where Carers, local authority, NHS and third sector get around the table, discuss issues and look for solutions and a way forward - important stuff!

It's good Carers are now regarded as equal partners - well around here anyways!
Gone are the days where services were developed and delivered in a 'take it or leave it' approach, only Carers know what will truly work for them and it's never a one-size-fits-all kinda deal!
In recent years it's sure improved around here and lets hope it's improving elsewhere too!
The Carers Newspaper...

I've decide to highlight and post a link to the...
        Carer Newspaper.
Sometimes Wendy and the Chill 4 us Carers team include items from here and even if I'm not included - it's always a good read so...
Thank you Wendy!

Last but not least...The Three Towns Carers!

Even though things are not doing brilliantly here health-wise at the minute with Coo, thanks to our SDS (Self Directed Support) care package, I will still get out tomorrow and spend some time with other Carers. It's so important to have a wee time out, it may just seem like a cup of tea and a chat but it's so much more! In fact, it's vital for Carers to spend time together, share information, experience and advice and most important of all...have a laugh and for a wee while, turn off all the stress of caring. I'd be lost without them!
If you haven't already, dig up a local Carer group and give them a go, you may be pleasantly surprised at the warm welcome!
Stay strong
(((hugs)))
Maz x

Busy week Carers, Welfare Reform, Anniversary and PPF...

Hi guys yet again it's been a busy week!

Coo's just Coo - seizures and sleepy but still strumming happily along - he's been back on his guitar this week so things are surely on the up!
I've been out and about again!
PPF -  (NHS Patient Participation Forum)
On Tuesday I met a new group, our local PPF - well, it's not really a new group, I've been involved with them online for years but this week I met up with them face to face!
It was interesting and informative and as always, the real value is in sharing information and experiences. I really felt it was worthwhile being involved  - it's important people have a voice and raise issues and challenge where necessary.
Welfare Reform -
The latest Welfare Reform session for the Scottish Government conducted with researchers from Napier University went well. Sometimes it can be difficult sharing information, it's not always easy to open the box and examine things fully.

Health difficulties, disabilities and the current changes and challenges in our welfare system have brought their own brand of stresses for many disabled people and Carers and Coo and I are no exception!
It's really why I agreed to be involved with this three year project in the first place! It's important! I truly feel the research collected, will properly document just what did happened to the most vulnerable people in our society during one of the most turbulent and divisive periods in recent times and...I for one, want a proper record, taken from ordinary people and in their own words, accurately recorded!
We must all stand together and speak out strongly, whenever and wherever we can!
Happy news this week too...

It was our wedding anniversary this week. Thirty-one years - just where does the time go? lol
The weather was fine and bright so we decided to hop on a ferry to Arran...
It's a wonderful place for a visit and at any time of year! From museums, hill walking, cheese tasting and whisky distilling it's got the lot!
Just like Wallace and Gromit...we had a grand day out!
We sure had fun this week, I hope you have a wee bit fun too!
(((hugs)))
Maz x

January Burns Day, Birthdays and Carer Business...

Hi guys, what happened to January? I turned around and it's just about gone!

Ok, what's been happening?
Well, Firstly...Happy Burns Day!

January 25th is a special day for us, not only is it Burns Day, it's Jessica's day too so...
Happy 3rd Birthday Jessie!
Not only did we have birthday cake and the usual treats but in honour of Rabbie sharing Jessie's special day (or the other way around!), we had haggis, tatties and neeps too -what a great wee family day!

Health...
Things are still a bit of a struggle here, Coo's just being Coo - loads of colds and sniffles about and loads of seizures too but on the whole he's fine and me? I had that wee health scare at Christmas, thankfully not a stroke after all (MRI was clear!) but I'm no further forward regarding what really happened and with around 18 weeks waiting time to see a Neurologist, I have a feeling this will run and run. Good thing is, the symptoms are no worse and we're coping so it's all fine!

Now to business...

It's good Carers are now involved through most practices and processes with our Local Authority. In fact it's a welcome change as it's not so long ago Carers were more or less told what services were available and had to try to make them work but...not anymore! From Carers Strategies, Advisory groups and support planning, we're involved and in the case of the SIB...we have a seat on the board! Changed days and that can only be a good thing!
Stay strong friends and keep fighting, we'll get there!
(((hugs)))
Maz x

Happy days, Hospitals and Carer Thoughts...

Hi guys, did everyone have a happy Christmas? Ho ho ho!

We had a lovely day!
We made it for dinner at Coo's sisters and a great time was had by all!
We're still struggling along with the usual health hassles but everything went well on the day and for that we're mightily thankful!

The cheerful, festive feelings didn't last long though and we were at the hospital for yet another Christmas time - my MRI arrived on the horizon. I suppose it was better done sooner rather than later but I'm just fed up of the whole situation already!
I've discovered I'm not a particularly good patient.

I really hate being on the cared for side of the equation and can sympathise with Coo...it's down right rotten! Now, I'm not sure if it's the continuous appointments, meds hassles and bloods with Coo over the years or not but having lived it so long with someone else, I just don't seem able to muster up the energy to go through it all myself - I feel kinda battle hardened even though I've never really been ill myself at all! Does that make sense?
Who knows, maybe it's just par for the course for most Carers!
Anyhow, The symptoms are no worse, they're no better either...but they're no worse! We're both coping ok and I've survived the first round of tests so...now we wait!

2014 has been a great year!

Health-wise it's been challenging but we've been so blessed in other ways too! Our grand-daughter Jessie's surgeries went well, her walking is improving all the time! A new wee grand-baby came along too! Wee Islay arrived in October, she has similar hip problems as Jessie but they'll fix and she's bonny, hale, healthy and happy!
All the buzz with the commonwealth games and my wee stint with the Baton gave us a major feel good factor too so all-in-all it has been a good year this time around!

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

Health issues, Carers & SDS...

Hi guys, it's been a very difficult week, Coo's is still poorly, we're waiting for blood and x-ray results and to cap it all I ended up in A&E myself.

I had numbness and tingle in my hand and face for over a week, I had no pain so wasn't that concerned but I caved into pressure from family, got a last minute cancellation and saw our doctor. Fully expecting a quick once over and maybe a prescription or even better an...it's fine don't worry...but no - I had to go to A&E and wait and wait!

I won't go into all the details here and now - I think that's a post for a stronger day- all I'll say is, the whole A&E experience fell very short of the quality of care I had expected. Waiting times so in excess of current guidelines, I could have cried in frustration! I'm not exactly sure what I'm going to do about this yet but that's a fight for another day, not today!

By contrast, hospital care itself, leaving aside the eight and a half hours wait in A&E, was caring, friendly and excellent quality and for that, I am so very thankful as it restored my faith a little. The staff we're open, friendly, tried to make my stay and as a Carer, the need for it to be over and me out of there as quickly as possible work but dear-oh-dear what an experience!

Thankfully our SDS (Self Directed Support) care package kicked in seamlessly, while I was admitted, Looby came to stay an extra night & day with Coo and this really meant, I wasn't worried so much about how things were faring at home and that so helped!

Thankfully my CT scan was clear, I need an MRI and I've agreed to have it done as an out-patient but for now I'm just trying to gather some strength, re-group and re-assess things a little.

I'm ok and we're coping!
(((hugs)))
Maz x

What a week, Jabs, GP's keeping going...

Hi guys, what a week we've had!

I was right about needing time at home after the Flu jabs - Coo was poorly, he developed a cough and a temperature and additional seizures kicked in too - not an easy one to cope with but on the plus side I was absolutely fine and thank God for that!
We waited it out a few days in the hope things would settle and it was just some effects from the jab, but...no - never one to do things by halves - Coo got sicker and the dreaded vomiting seizures returned  so it was time for a rethink!
I'm always concerned when the vomiting seizures show up, we had a nasty bout of Aspiration Pneumonia before and it really was the worst of times! These seizures just makes everything scarier and so much more difficult to deal with. The noise, the choking, the fluids, the rest...getting the picture Yeah thought so...enough said!
#Visit to GP 1

Our GP is a lovely guy, he's good with Coo and he listens...so first things first, AED (Anti Epilepsy Drugs) are usually all over the place when Coo's ill and if they're too high (or too low for that matter!) things escalate so - bloods done, next - chest, he's prone to infection after Pneumonia and especially this time of year!
Everything seemed ok so we sat it out, stayed home and just hoped for the best - not really a good week.
#GP visit 2
Fast forward a week, things are no better, maybe worse so back we go!
Blood results are back...they're high, not toxic yet but too high! - safe range is 10-20 and Coo's currently at 25 - there's a concern but and it's a big but! He now has developed a chest infection and needs anti-biotics and this will all effect the drug levels too!
#Decisions, decisions...
Do we stick and see if they come down on their own? Do we reduce the doses and trigger yet more seizures? Decisions, decisions! I think that's one of the worst parts about caring, influencing and making decisions for another person and sometimes there really is no easy answer, you just gotta trust the judgement, hope for the best and hang on for the ride!
Caring sure is a roller-coaster ride at times and...it's never boring that's for sure!
We've talked it over and decided to wait for a few days and regroup - hopefully by then, we'll have caught a break and things will be back on the up!
Meantime, another week at home is on the cards.

To keep me sane I'll be soup making (this week it was creamed butternut and carrot!) and crafting and my passion...harping! Not the scolding, angry type but...the musical variety and judging by the photo, harpings been soothing people for the longest time! lol
Enforced time at home used to bother me, I used to feel hemmed in and kinda caged but as time has travelled along, it's easier and it so helps we have an SDS (Self Directed Support) care package in place. It means however bad things are I can still escape for a bit and more importantly - sleep soundly a few nights a week!

Onward and upward!
 As my granny always said - "It's a good life if you don't weary"
so...here's to not wearying!
(((hugs)))
Maz x

SIB, Blustery days, woolly hats & Carer Flu-Jabs...

Hi guys, winter has arrived here!

Just how do I know?
Well... I've been chasing panels from my greenhouse all around the garden and I feel a bit like Piglet in Winnie the pooh and the blustery day and I've a feeling this is just the start!

Last week, some of my wee Carer group (Three Towns Carers), were missing in action. I think this time of year brings added stress and struggle for Carers, everything seems just that bit more difficult in the grey days of winter and I honestly think, grey days make for greyer moods and with coughs and sneezes all around, it's so hard to avoid the dreaded sniffles!

While a cold is a pain in the neck for most people this time of year. For most Carers it means, addition struggles coping in an already leaky boat and a dread they'll be ill themselves!

Speaking of which...NHS, Carers and Flu Jabs!

All being well, we're off for our flu-jabs this Saturday. Remember Carers get free flu-jabs too - see you're Doctor now! Don't just get a flu-jab for the person you look after but...get one for you too!
Trust me, the flu jab isn't really as big as this one! lol You won't feel a thing - well, not really!


Am I slowing down for winter? Heck no!
 I've a SIB (Shadow Integration Board for Health and Social Care) meeting on Thursday in Irvine and the Carers Scotland Summit in Stirling on Friday - I like to keep busy and I'm so grateful for the SDS (Self Directed Support) that makes it possible for me to stay actively involved with things that are so important to me!

Well, it's definitely 'woolly hat and wellie wearing weather'! so...keep strong,keep cosy and splash in a puddle too - it's good for you!
(((hugs)))
Maz x

SIB, Advisory group, Carers meet and new babies too...

Hi guys, what a week - I've been busy again!

First up...
I was out with my Local Authority and NHS Health Trust - I'm the Carers rep on the shadow integration board (SIB) and try to make sure Carers voices are heard just about as often as I can!

Next up...

I went along to the latest Carers Advisory Group last Thursday. It's a good meeting, Carers from our area, meet with the Carer champion councillor Steel and other council representatives and Carer services providers to discuss, issues and concerns. It's only by working together we can successfully change things and get a better deal for Carers.

 

Fun times...

On Friday, some of our Three Towns Carers went over to Irvine for a master-class in, of all things, hanging baskets! lol Now I grow loads of veggies and fruits but I'd never arranged a hanging basket before and guess what? It was fun!
Eight of us had a ball, planting up the baskets and tea drinking! What a pleasant way to spend a wet Friday morning!

I kept the best news for last...

Our new wee grand-baby arrived this week so...
meet baby Islay Eve with her big sister Jessica!
We're just truly tickled pink with the both of them!

 All in all it's sure been a busy week and it's been a happy one too!

Next up, it's the Carers Parliament on October 8th!

I hope you've had a good week too where you are and if you're at the Parliament...shout out for Carers!
(((hugs)))
Maz x