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

Christmas trees, Carers and happy time-outs...

Hi guys, Christmas is definitely upon us!

I guess, I can deny it no longer! The lights and Christmas trees are going up all around me too so yup...I guess it's here! lol

The last month has been a real struggle again. Coo is still so very poorly and we've been mostly at home, living quietly. The infection he picked up around the time of his flu-jab, just didn't go away. No matter what we tried from cough and cold remedies, right up to and including anti-biotics - nothing made any difference what-so-ever! The infection continued, the seizures spiralled and we were back on that roller-coaster ride again!
Land sakes...what a month!

So what have I been up to then?
Well, apart from coping with Coo that is! I've been busy, with my wee Carer Group. Even when things are difficult, it's important to spend time with other Carers, they know just what it's like and can really support one another and...here are some of our wee group!

We were at a  local Christmas Fayre on Saturday fundraising for our group. This wee day is important for us as it means we can have wee days out and lunch throughout the year.
Now, that might not seem much but for lot's of Carers it's a real life-line, a window to the outside world and just a wee time-out away from caring!

One such day is tomorrow - the group are going to Cardwell Bay!

Its nice, especially this time of year, it'll have snow flakes, trees, twinkly lights and tinsel all around... and...I'm  going!
I'm one of the lucky ones and have an SDS (Self Directed Support) care package in place so our PA Looby, will come stay with Coo, I'll know he's safe and I will still get to go enjoy it all with the others, forget about things for a wee, happy, while!
I know it's not so for lot's of other Carers, I struggled on alone for decades before we made the switch and got some proper help in place. I  only wish more Carers had such good support too.

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

#2 Carers Rights Day...What's changed this year?

Hi guys, looking back at my 'Carers Rights Day' post from last year...
http://mazcarer.blogspot.co.uk/2013/11/carers-rights-day.html
Has anything changed?
It's all still so very relevant and in some areas yes there's been changes but in so many important ones I'd have to say no!
SDS (Self Directed Support)
Our SDS care package, is still working well and for us a lot of the uncertainty, stress and struggles with the practical side of caring have been reduced and we're so grateful for the help and assistance we have but I'm very conscious, it's not so for most Carers and on that front I fear, this year there has been little movement.
DWP Welfare Reform
The issues surrounding Carers and Welfare Reform are still very much a worry for disabled people and their Carers and with the push continuing to hurt the most vulnerable in our society it seems likely this suffering is set to continue and isn't that a depressing thought!

I have really tried this year, tried to make sure Carers voices are heard and in the places where policy is influenced and made! For now, I really feel that's the only way we can begin to make any positive moves for change - so be it, Summit, Conference, policy or board meeting, I've pushed the real issues Carers face, in hopes those who make law and can positively influence things will understand and make the necessary changes!

Stay strong my friends, better days must surely be coming!
(((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, Toolkit & Carers Scotland Summit...

Hi guys, it's been a busy few days, with meetings galore!

SIB...
Thursday's North Ayrshire Shadow Integration Board meeting, went really well. There were both interesting and thought provoking presentations on the day and opportunities for questions too.
Unfortunately the meeting over-ran and I had to leave early - typical Caring responsibilities, respite and transport issues this time, sometimes things just get in the way don't they!

Carers & Service User Reference Group...

I'm content the SIB director has taken forward my concerns surrounding our Carer and Service User reference group - sadly it's been drifting for a few months- but I'm confident, this group will now continue in some shape or form and it doesn't really matter which, the important thing is that Carers and Service Users voices continue to be heard and at a level where they can influence policy!
It's only when we work together, things improve!
I'll follow closely and just see where this goes!

The other big event this week was...
' The Carers Scotland Summit'

I travelled with members of Three Towns Carers, from the coast up to Stirling for our Annual Carers Summit. It's where Carers from all over Scotland meet, share information and discuss the issues that are important. Just what is (and isn't working for that matter), for Scotland's Carers. It's where we share good practice, input on Legislation and influence new policy too - so it's a big deal!
I'm glad we made the trip, it was an interesting day and...
Carers Scotland launched...

 'The Carers Toolkit'

I'm taking it a little quieter for this week as both Coo and I got our flu-jabs today and going on previous experience, we'll need a few days at home so I'll be cooking, crafting and harping for a bit instead of gallivanting out to meetings!

We're ok and I hope you're doing ok where you are too!
(((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

Carers Parliament, challenges and positives...

Hi guys, I've been busy this week, speaking out for Carers - I do try!lol On Tuesday, with other Carers, I made the trek from the coast up to Edinburgh for the third Carers Parliament!

Just who was there from our government?
Carers Scotland delivered the day and Alex Neil - Cabinet Secretary for Health & Wellbeing and Michael Matheson - Public Health Minister, were the speakers. They both spoke well and shared lots of information relevant to Carers but the most powerful part of the day was where Carers shared their own stories, their issues and the struggles they had experienced trying to seek out proper care and support! No-one got angry, it was dignified and controlled but the pain and struggle was all so tangible in the room - we'd all been there at some point or were still struggling on now!

We need to speak out and just tell it how it is!
I used a Respite day to go and I'm lucky, our SDS (Self Directed Support) care package, gives me the support I need to have a time out, some Respite and be able to continue doing things that are important to and for me but I know it's very different for lots of other Carers.
Fifteen minutes networking when we arrived at the parliament, showed that SDS is working well in some areas like mine and...how shall we put it? Far less impressively in other areas around Scotland! I challenged the minister on why it's been interpreted so differently by the local authorities, there's no consistency and he agreed!

He assured the Carers present, our government is on the case, they are closely monitoring and reviewing all the local authorities in Scotland and just how they are (or are not!) implementing SDS and I hope they do sort this out!

When SDS works, and I mean really works, it can be so wonderful!
Really opening doors for Carers, doors that have previously been shut tight! - Respite, time out, equipment, help at home, even just time to think, draw breath and regroup for the next onslaught. It really can be the difference between, coping and continuing and giving up.
Caring on alone is a scary place. Having to make decisions for someone else, all the time, when you don't really know what the best course of actions are, is really scary too and a helping hand, a bit of support and a little kindness along the way makes all the difference in the world!

I'm glad I got to go to the Carers Parliament and speak out - it's important for Carers to come together like this, to talk, share experiences both good and bad and to challenge our government when necessary!
It's only by working together will we ever have a chance to change things!

Keep strong!
(((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

A wee Swim a smile and a time-out...

Hi guys, I'm feeling more like my sunny self today!

Coo had a more settled night with six seizures and was up and around early too so...

we decided to take our grand-daughter Jessie swimming!
Well, I went swimming with Jessie and Coo had a wee cuppa and watched us splash about!
It was fun, a wee change and a pleasant wee hour out for Coo too and it has lifted my spirits back up again so....result!

All's well in our world for now!
Hope you're having a wee time-out where you are too!
(((hugs)))
Maz

Carers Roller coaster, Indyref, Carers Parliament...

Hi guys, what a roller-coaster few weeks!

I'm feeling wrung out and kinda like an old dish mop! lol

but where to start?
Ok, hard hat time...
Things have been difficult for Coo and I, his AED (Anti Epilepsy drugs), are too high in his blood stream so we've been tweaking the doses, battening down the hatches and just hoping things will settle a little! Multiple daily seizures are never easy but we're both hanging on in there!

#Indyref...
I've been wrapped up in Scotland's Independence referendum!
For me, it wasn't a huge desire to leave the UK.

More of a burning desire to do things differently, find a better way and in the process, hopefully improve peoples lives in general.
I've always voted - it's important to me and I previously always voted Labour too but in more recent years, I've felt a pull towards something different.
ATOS, austerity cuts and the continuing struggle for Carers and disabled people just to get by, have left me so sad and down-heartened at times, more of the same was unthinkable! I guess in the end, it was the announced further austerity cuts from Westminster that made my mind up.
I wanted something else, the chance to hope for a new start and hope for a better way too so I voted yes!

There's no other way to put it...We lost!

There were a lot of us (45% in fact), who wanted to try but, in the end, it was not to be. I can't believe how deeply I felt when the results came in, kinda flat and sad and I suppose so very unlike optimistic me!

I hope the promised powers do come to the Scottish Parliament or I and many others both 'Yes and No' voters will feel extremely cheated - I guess we will see!

In all this current political turmoil, the Carers Parliament on October 8th should be interesting!

One thing's for sure, I'm hoping for more settled times!
Keep strong friends,
(((hugs)))
Maz x

Respite, SDS and shop till you drop!

Hi guys I've had a wee time out this week!

I've been off on Respite for a few days and at my usual place...Blackpool!

I like Blackpool, it's fun and cheerful and if the weather is kind too, it's a brilliant holiday spot!
The Queen's is a lovely hotel. It's right on the prom too and the beds are comfy, the food is great and the Jacuzzi is toasty warm! lol
so...mum and I shopped till we dropped, had all number of cake eating and tea drinking sessions and generally had a...ball! Speaking of which, did you know Blackpool has the biggest glitter ball in the world? Well, they do and here it is... ta-da!

You sure need you're shades on when the sunshine catches a hold of it! lol
It's so cool though!
When we were there, the little ones were running around, chasing the reflected light - in fact everyone was having a ball! lol

Thanks to our SDS (Self Directed Support), while I was away, things at home, managed along just fine without me. Looby came to stay with Coo and keep him safe and this meant, I had a real break, with time to switch off and just go with the flow for a bit! I think that's what Carers miss the most, the spontaneity of life, being able to just get up and go and not need to plan all the contingencies and deal with the 'what if's' that come alongside disabilities and caring in general!

That's why I feel so strongly about the need for regular Respite breaks for all Carers!
It's oh so very important!

Unless you've lived this lifestyle you can only imagine the release of pressure that comes from proper Respite!
It's the difference between drowning in darkness and finding a safe harbour for a wee while!
I'm so very fortunate to have support and having been there myself, I know it's so very different for lots of other Carers still struggling on alone and it's just not good enough!

I hope the time comes where we all have the support we need!
Keep strong my friends,
(((hugs)))
Maz x

Appointments and time outs...

Hi guys, it's been another busy week, what with appointments, paperwork and just getting organised!

Ok appointment 1...

Coo's bloods are still problematic and he has an increase in seizures too so he's having more bloods done again this week. He just can't seem to catch a break at the moment. We're going to wait for the blood results and then... we'll regroup and decide just what to do. - we're coping and that's the main thing!

Appointment 2...Good news!

Remember my post about my Shonky eyeball from last year? - here's a reminder!  Well, I've been visiting hospital for the last year and now the results are in! No treatment required - woo hoo!  Turns out I have a tilted optic disc, it's been checked and it's nothing to worry about so...result!

I've one more appointment to go...and it's a good one! lol
I'm off tomorrow for a wee time-out and with other Carers too!
We're going on a visit to  'The Ayr Flower Show'

I've never been there before and it looks great and best of all? I'll be able to have a laugh and a fun time out with other Carers at a wee change of pace!
Thank you SDS (Self Directed Support) - Regardless of how things are, tomorrow, Looby will come keep Coo company and I'll get to poke around the flower show and most probably indulge in some plant buying! lol

I'm hoping for some sunshine and if not, well, there's always the wellie boots! lol

I'm faring ok here and I hope you're doing ok too!
(((hugs)))
Maz x

Carer Roller-Coaster ride & Harping on...

Hi guys, it's been an up and down kinda week. You could say, we're back on that roller-coaster ride again!

Coo's blood/drug levels are yet again problematic...
The safe range is between 10 and 20 and Coo's latest results? 24! - Ok, choices, do we reduce the doses again or do we stick, sit it out and see what happens?
We're not quite sure yet, Coo's seizures are no worse, he's stuck at around 10 a day but then again, it's been A lot worse and we coped. Only thing is, he's really sleepy but he's coping and usually any changes just set it all off again!
I think we'll see how things are overnight and regroup in the morning!
I've been keeping busy, while stuck in at home so I've had plenty of time to...harp! lol

I love it, it's just so very soothing to lose yourself in the music for a wee while, I guess, it takes me somewhere else and on a difficult day, that can be a real good thing!
Don't worry I don't really dress like this while harping - well not often anyways! lol  but this photo just goes to show that harping has been around for the longest time!


Whatever your passion is, be it music, crafts or cooking, give it a bash! I say, anything that helps you cope and stay healthy, hale and hearty and doesn't hurt anyone...is ok in my book!
Keep strong
(((hugs)))
Maz x

Busy, baton, travel and fun times...

Hi guys, where has the time gone! I just turned around and July was all gone!

Coo's seizures have been so problematic over the last month. We've been adjusting the meds, and just hanging on in there so it's been a bit difficult at times this month but....we've had some great moments too!
Where to start... ok!
The Baton...

The Queens Baton Relay finally made it to Ayrshire and a good time was had by all! How exciting the whole day was! All the expectation and excitement was worth it - I had a wonderful time! The town was so busy and everyone was cheering me on, I guess there was a real feel-good factor all around and it was just so brilliant to be part of it all!
Next...
A lovely celebration for all our baton bearers and their guests. We had four Carers from our group who were carrying the Baton so we decided to take another four of our Three Towns Carers as our guests. This meant eight Carers got a wee night out and dinner with Provost Joan and I'm glad we did it this way as Carers seldom get the chance for a fancy night out with free dinner thrown in too! Everyone enjoyed it so...Result! lol

Germany...
Our nephew Craig, lives in Germany and we made it all the way to his wedding - woo hoo!
Bearing in mind Coo's current erratic seizure activity and the stresses with changes in routine, it was no easy feat, it took a lot of planning and a great deal of organising but we made it! Previously we would have had to regretfully declined his invitation and stay home but the flexibility of our SDS (Self Directed Support) Care package, gave me belief that maybe, just maybe, with careful planning and support, we could do this - and we did! Oh I'm so glad we did, it was so wonderful!

So, just how did we manage it all?
Ok, Lobby was always coming with us - we would never have coped on such a trip without support so with her along it all seemed manageable!
A hotel was out of the question - Coo's seizure activity is so noisy and aggressive at the moment, it would just not have worked being in a small hotel room with other guests disturbed either side so we opted for an apartment with a lovely German family on the doorstep to lend a hand with language, directions and local information etc. - sorted!
The wedding was over two hours from the nearest airport and if we wanted to do some sight-seeing too, we'd need a driver - we asked our son in law Stevie to come along and drive for us - sorted!
We struck gold with our choices the apartment was very large and secure and just what we needed for a base for both the wedding and to allow a little touring too! woo hoo

Flights...
We found the most cost effective and easiest route for flights and just hoped for the best, everything would work out - best laid plans and all...we got delayed...for hours and hours but at least with all the support around we managed to take turns keeping Coo occupied and calm...mostly! There were some hairy moments but we coped! lol
The wedding was the main reason we went to Germany and it was a wonderful day and here we all are - check out the guys in their kilts! I'm so glad we got to go!

We even managed a boat-trip on the Rhine and a ride in a cable-car high up to a Castle too!
What a wonderful time we had!
I'm so grateful for the SDS package that made such a wonderful trip possible - we would not have managed alone, we just could not and would not have gone at all and that's such a shame! The flexibility and positivity that SDS has brought us is beyond price, it's given us a can-do attitude and opened up so many wonderful possibilities. Previously, so many doors were closed for Coo and I and SDS has changed that, in fact it's changed us too!

When SDS comes your way, please don't be afraid of the change - reach out with both hands and grab it!
(((hugs)))
Maz x

Mixed bag day...

Hi guys, things have been up and down again here!

We struggled again as Coo was really poorly overnight and it took quite a while to get going this morning but we rallied around and in the end...we were great!
Coo's wanted to go for a bike ride for months now. (If truth be told, I felt a little guilty out on my Carers cycle day last week as I knew Coo would have loved it and was so desperate to get out too!).

He's struggled so recently, that it's just not been possible but with things settling over the last few days, we made plans to get the bikes out this morning! woo hoo!

After the poor night,
I thought the bike ride would be off but...no!
By lunch time Coo felt better and wanted to go! Ok we had to compromise and didn't go very far but it was out! and it was fun! Weeee!
He's been sleepy and poorly since we came back but we're both glad we went, nothing beats feeling the sunshine on your face and the freshness of the wind blowing you along on your bike! It was just good fun and passed a pleasant wee hour!
I guess it's still one day at a time here and that's ok too, good days and happy times are so prized in fact, I think they're a bit of a blessing really.

If you get the chance to try out a wee bike ride - go for it! Something that much fun, shouldn't be good for you...but it is!
It's a win-win kind of a deal!


I'm glad we had such a good day today, tomorrow's D-Day for the Spirometry test. I'm staying positive and sending happy thoughts and a wee smile your way,
Stay strong as will I!
(((hugs)))
Maz x

On the up...

Hi guys, fingers crossed and not shouting too loudly but...I think things may be on the up again at last!

Coo's blood results came back and his AED (Anti-Epilepsy Drug) Phenytoin levels, were too low this time. His optimum level is at the high end around 19 - 21 so for him a level of 16 is too low!
With increasing seizure levels daily and no sign of any improvement, we decided to bite the bullet and up the doses by 25mg's in an attempt to get things back on an even keel - well as even as it ever is with Coo!
So with sunshiney thoughts...

We upped the meds on Friday and a few days later, things have been a little bit better! The seizure levels are beginning to come down from fifteen overnight to eight so...result!
Eight seizures a day might seem an awful lot and it is but if you put it in context - last week, at it's worst point it was seventeen and at it's worst, Coo had thirty seizures every day for six months! It's amazing what you can cope with when you have to - it's not easy but it never is for anyone living with a difficult medical condition is it!
Coo managed to stay awake most of the day too so it's all good! I'm just happy to report, for now, things are on the up and Coo's feeling a little better so...crisis averted again!

I hope things are a wee bit settled where you are too!
(((hugs)))
Maz x

Hard hats, Cycling hats & SDS too...

Hi guys, it's been hard hats' and cycling hats' all the way this week!

First for the hard hats...
I've sure needed to dig out my hard hat and flak jacket as Coo's no better. We're no longer in anti-bio-land there's no point really! Any infection he had is surely gone by now!
The x-ray results should be in soon and our GP's arranged a Spirometry test
I never knew there was such a thing but there is and Coo's booked for it next week. The seizures are still increasing and it's all such a struggle but we're battening down the hatches and coping one day at a time!

Now for the cycling hats...
Yesterday, my wee Carer group, 'The 3 Towns Carers' had their annual sponsored cycle/walk/tea-drinking and getting around the island day and it was...fun! Ten of us set off to raise some funds and have a bit of a laugh too, some were walking and some (like us!) were cycling, taking our time and just getting around the island!

The Isle of Cumbrae isn't huge. It's eleven miles around and fairly flat too so it's just a nice wee size for a bike ride - every so often!
We had a great day.
We started with a wee cuppa and some toast (or scones!) at the Moorings in Largs and after a wee catch up away we went! A short ferry ride and we were off and running - three of us cycled, the others walked and the weather behaved beautifully! woo hoo!
I must add, of the three who cycled, one was my wee mammy aged seventy-two and fit as a flea! lol She hadn't been on a bike for a while but was keen to go so I thought...what the heck, come on! She was quicker than the rest of us and thoroughly enjoyed herself! I think she was chuffed she made it around and rightly so - whit a wee wummin! lol

Yet again, I'm reminded how fortunate I am that we have good support in place - SDS (Self Directed Support), has made such a difference. Previously, if Coo was really poorly, I would have had to cancel my plans and just could not have gone but...not anymore! Looby came to keep Coo company, make sure he kept safe and well and I had a little time out and some fun knowing everything was ok!

I only hope more Carers manage to find something that works for them too!
(((hugs)))
Maz x

Carer Struggle & Blogging in the wee small hours...

Hi guys, we're still in anti-bio-land!

It seems like we've never left and blogging in the wee small hours is never a good sign!
It's been a difficult night so far and I'm taking a wee respite over a cuppa and just trying to regroup a little!

Where to start?
Ok, things are pretty dire here.
The chest infection Coo developed over a month ago, is still with us. He's had three courses of antibiotics in five weeks and he's no better! He's had a chest x-ray too - we're waiting on results- but we're really struggling. The seizures are thick and fast, the cough is awful, the phlegm is catching him and he has a bluey tinge to his skin while he's seizing. On the plus side, he's recovering between seizures so we're still ok but it's now getting just a little scary!

Coo doesn't cope well, with hospital admissions and from past experience, out of hours services can't really help - we have the rescue meds and wander/seizure alarms at home so if things can be contained at home, and they usually can, it's easier all around just to keep a lid on it and cope until morning!
I'm so worried, we're headed back into that dark place again with aspiration pneumonia but I'm so very upbeat with Coo, please God it doesn't come to that again!
We'll see our doctor again tomorrow!

The life of a Carer sure is a roller-coaster ride!
Last week was Carers Week and I had a lovely week!
I was out and about, had some fun and some fresh air too and even laughed a lot at a 'Laughter Yoga' session and I'm so glad I did as this week has been so very difficult!

Thank God for SDS (Self Directed Support), I have some Respite in place and can access those little opportunities and chances that are important for me -  lot's of Carers are not so lucky and that's to all our shame!
One thing's for sure, I'd have struggled a whole lot more without proper support and for that I'm eternally grateful.

Stay strong,
(((hugs)))
Maz x

My Carer poems...

Hi guys, with time spent at home again, I've been in a reflective mood and...with Carers Week upon us, I dug around the blog for my Carer poems....here!

Having just received the report from the 'Carers' Parliament 2013' through the post, I've settled on this one, it's the one I wrote and delivered at the first Carers Rally in Edinburgh over five years ago - I can't believe it's been that long!
Check me out in the fetching 'Tartan and high-vis' vest! lol

‘Just a little Peace’

We don’t need any help, we’re managing fine,
Pile it on…pile it on…never look for a sign.
Carers work on with not much of a break,
They continue to care for a loved ones sake.

As the caring goes on and the load does increase,
God send us some respite, just a little peace.
Some time to go walking, kicking leaves in the park,
even just sleeping when everything’s dark.
The caring continues deep into the night,
we struggle and strive and continue to fight.
For help it is out there or so we are told,
but trying to find it...you need to be bold.

Some time for a break, to do something new.
Maybe just sit still and take time for you.
Reading a book or watching a show,
Finish something, not having to go.
As the caring goes on and the load does increase,
God send us some respite, just a little peace.

It’s not easy to spot us, we look just like you.
Carers are working and constantly too.
When others go home at the end of the day,
We still keep on working, minus the pay.
Please listen now, it’s so easy to find,
Yourself as a Carer and stuck in this bind.
Nobody knows how, it just happens unplanned,
as quick as that jar with the small grains of sand.

Heed what we say as we carry on,
caring and struggling way past the dawn.
we know lots of Carers who live in this way,
it’s not what they asked for, this role that they play.

Some time to themselves it’s not much to expect.
It’s down to government and Scottish Exec.
Some help with this task that never seems to cease.
as caring goes on and the load does so increase,
please send them some respite and just a little peace…

It still kinda covers all that I want to say. We've a long way still to go!
Keep strong my friends,
(((hugs)))
Maz

Back in antibio-land,SDS & Carers Week...

Hi guys, we're struggling this week and we're back in anti-bio-land...again!

Coo's chest infection has returned. With a wheeze like an old horse and phlegm and the dreaded increase in seizures, I kinda guessed as much - so he's on the antibiotics for another run!

We'll be living quietly this week and hoping things quickly improve as it's 'Carers Week' next week!
It's a busy week!
Previously, at this time of year, a bout of really poor health with Coo, would have had a devastating impact. All my plans and respite time, days out I'd so looked forward to and doing things that are good for me, would have all been cancelled as I'd have to stay home.

Fast forward to today and it's a different story all together!
Our SDS (Self Directed Support) care package, gives me the control, flexibility and the freedom really, to just manage to get out, to do the things that are important to me and just to live really!
What a positive change!
I know not all Carers are as well supported! Too many still struggle on alone with little real help or respite, in what is a very difficult and challenging path and that's why Carers week is so important!

Please support Carers Week, if you see Carer items in the news on the telly or even on your high street, spare a kind thought for all those Carers just doing the best they can for a loved one!
(((hugs)))
Maz x

Busy times, SIB, Carers voices being heard...

Hi guys, it's been a busy few days - I've been out with my Local Authority again!

Here in Scotland, NHS and Social Care are merging and I was asked to be involved with the Shadow Integration Board.

Now, you will know exactly how I feel about Carers voices being heard and just how important it is to influence those with the real power to positively change things for Carers so...of course I said yes!
I'm now the Carer member of the... 'Shadow Integration Board for Health and Social Care' for North Ayrshire.

My first 'SIB' event on Wednesday...
The event was busy and it was a fairly high profile group, mostly, if not all professionals working within NHS, Local Authority and third sector organisations and when we broke into working groups, I was the only lay person in our group.
Sometimes this type of meeting can be a little bit intimidating but I just remember why I have been selected and just why I have a place on the board - I'm a Carer and my experience of both 'caring' and navigating the 'Health and Social Care' system is really valuable! The experience and knowledge I have gained and shared with other Carers, is pertinent in us all finding a better way, a better deal if you like, especially for Carers. That can only be achieved by working together, with Carers placed right at the heart of policy and decision making and with places on the board...now that is valuable!

I spoke out strongly for Carers, shared experiences, issues and ideas and any doubts about why I was there were quickly dispelled! Carers need to be there!

All-in-all it was a very productive meeting - I'm glad I agreed to be involved  and I hope the other local Authorities and NHS Trusts involve Carers at the decision making process too!
I honestly feel, it's only by truly listening and working together, we can build a better service for everyone!
Stay strong and speak out wherever you can!
(((hugs)))
Maz x

Shared Colds, Sleep and SDS...

Hi guys, it's a Caring sharing kinda thing - Coo shared his cold with me! Cheers!

What a time, it's been!
Thankfully, Coo began to improve before I came down with it and that made things a whole lot easier!

so... after gallons of hot drinks and sooky sweeties and a week virtually hiding under a wee cosy blanket - I'm back good as new..yeah!
Thank goodness for our SDS (Self Directed Support)- Gone are the days of struggling on alone and so dreadfully tired! At least, this time, I was able to timetable in some proper sleep and I really think that is what helped kick that awful cold sooner rather than later!

This week, I felt better and I even made it up to Glasgow for my meeting with Carers Scotland. It's always a productive meeting there as the Advisory Group has Carers from all over Scotland. It's good to network, find out just what is working (or not for that matter!) all over Scotland!
If something is working well for Carers anywhere in Scotland? Well, we want to know and we want share it too don't we!

I sure hope that's me finished with coughs and sneezes, well, for a wee while at least and I'm sure glad the sun's made an appearance again so...we're ok and everything's rosy! lol

Hope things are a wee bit rosy where you are too!
(((hugs)))
Maz x

SDS, Sleep and Struggle...

Hi guys, it's all still a bit of a struggle here!

We're only just touching afternoon and already my thoughts are returning again to sleep! Where Carers are concerned, I bet I'm not alone in that one!

Sleep is such a valuable commodity for Carers. In fact it's the key to surviving and the difference between drowning and reaching a happy shore, so to speak!
You can probably tell, Coo's antibiotics have not kicked in yet. It's seizure city here and there's been no let up. I'm monitoring things, pumping in the meds and still hoping for the best for a turn around soon...and there may well be! It's not unheard of for Coo to respond quickly and be fine really quickly too so...fingers crossed!

Being stuck in at home again, my thoughts have returned to what it was like before we had our SDS (Self Directed Support), care package in place and while it's still difficult now, even in crisis, it was a whole lot worse in those days! No sleep, no real help and a constant struggle bouncing (literally), from seizure to seizure and trying to hold it all together - it's a hard, difficult position and sadly one, a lot of Carers still find themselves and that is dire!

At least I know, however bad things are, at some point...I will sleep! and what a difference that makes, just to know if I can hang on today, tonight sleep will come!
I know most people take this most basic of human needs for granted but I also know, I'm one of the lucky ones as too many Carers are still struggling on alone and with little real respite! That's why I try to influence those in power, those who really can help Carers get a better deal - Carers don't want the Earth, they don't even want a whole lot really, they just want some basic kindness and a wee hand up...not a hand-out and there in lie's all the difference in the world!

I hope you are getting some rest and a little kindness where you are today.
Stay strong my friend.
(((hugs)))
Maz x