Carers Summit, Campaigning and keeping strong...

Hi guys, I've been busy...again!
I've been a member of Carers Scotland's Advisory Committee for the last 3 years and on Friday, it was our 'Annual Summit'.
I set off early with some of the Three Towns Carers group who made the trip up to the big city! We like to make sure the Carers in our area have their say and raise both good practice, positive stories and any issues we have too!

I love Glasgow, it's a great place for a visit - all that hustle and bustle always makes me feel 'up' and excited! lol

The Summit went well!
The speakers were interesting and Deputy First Minister, Nicola Sturgeon MSP, had a good question and answer session.
As expected, the issues raised by most Carers were:
***The struggle with Welfare Reform,
***ATOS - Disability Assessment process issues
***Bedroom Tax!
***Social Services - Cuts/Contributions to Care Packages (some Local Authorities are doing better than others!).
I guess it's not surprising people were angry and upset. It's a worrying time for Carers and disabled people, who feel they're under scrutiny and unfair criticism from Department of Work and Pensions & ATOS, also general public and the media too!

All the scrounger's and striver's rhetoric has really hurt the genuine disabled and their Carers. - it's a horrid state of affairs and all so unfair!

Lord alone knows where it'll all end, one things for sure, it's hurting our most vulnerable citizens most!
We must stay strong, continue to campaign and speak out for a better deal for Carers and just help one another where we can!
(((hugs)))
Maz x

On the up again...

Hi guys, Coo seems to be on the up again!
His temperature is down and while he's still sleepy, he's been more alert and awake today! woo hoo!
I guess we've weathered another storm - well for now anyway!

While he's been poorly, I've been keeping busy.

This time, I've come over all Nigella Lawson and took to the kitchen!
Recipes for all number of weird and wonderful goodies have been tried out! The latest being the lovely Rocky Road bars and very nice they were too!

I'm glad Coo's feeling better.
He's had a right old struggle this month so hopefully we're over the worse of it for a wee bit and things stay a bit more settled!

I hope you're doing ok and having a settled time where you are too!
(((hugs)))
Maz x

Coughs and sneezes do indeed spread diseases...

Hi guys, it's true...coughs and sneezes do spread diseases!

After our visit to the Hydro last week, Coo has been poorly. It's always a real possibility when mixing in a big crowd. After a vicious tangle with pneumonia a few years ago, Coo's immune system was left impaired, making him susceptible to infection.
He had a temperature for a few days then a sniffle and the latest blood results confirm his white cells are raised again so no flu jabs this week - they've been postponed for now.

We've been mostly at home this week, just living quietly.
Coo's been sleepy too so I've been pottering around with my crafts, cake baking and...eating too! lol
I found a recipe for an easy lemon drizzle cake and decided to give it bash and it really was...easy peasy lemon squeezy! lol
I do so love the smell of baking in the house, this time it was lemony snicket tasty! lol

I raided my wee greenhouse for the last selection of Tomatoes too and made some creamy tomato soup. It's all in the freezer as I love nothing more in winter than homemade soup especially from my own tomatoes!

Comfort foods - in winter, you just can't beat them!
I hope things settle soon but for now, I'm keeping busy and catching up on all the wee jobs that have been hanging around waiting for ages!
Keep cosy and keep strong too!
Hope things are settled where you are!
(((hugs)))
Maz x

SDS, The Hydro and Jesus Christ Superstar...

Hi guys, it's been a busy few days.
We had a good time-out at Jesus Christ Superstar on Tuesday.

In fact it was brilliant!
The show, the lighting but mostly the acoustics! They were totally awesome!

What a venue!
Only thing is...it looks like a spaceship has landed, especially when it's all lit up like that! lol

It was easier than expected to get out to the venue too.
We've never travelled out that way by rail before.
We shouldn't have worried though, trains left Glasgow Central Station every ten minutes and after a four minute trip, dropped you off at the foot of a covered walkway - result considering all the rainy weather we get here!

I'm glad we decided to keep to our original plans as Coo and I had a wonderful time, the music and spectacle did our hearts no end of good and brought a smile, even a bit of cheer too!

After the show, a wee train ride back into town and a rest up at the Travelodge, meant we could set out fresh in the morning for the trip back home to the coast!

Coo's been sleepy and poorly since we came back but we had such a wonderful time and made another happy memory too! We've wanted to see JCSuperstar forever - it's one of our favourites  and to have been able to visit the Hydro the week it opened? Well, that's was just so fantastic, we're tickled pink!

We're so grateful for our SDS (Self Directed Support) care package. It allows us flexibility to plan and manage to do things that previously were just not possible - it's really opened up so many new challenges and possibilities for us both! Without this much needed support, we just would not have been able to go at all!

I guess that's one of our bucket list items completed too! lol

SDS has definitely improved our quality of life.
We definitely feel more in control of things now.
Most people take these feelings for granted, they've always had that power and been in control but it's not so for lots of Carers and people with disabilities! It's something that gets kinda lost along the way and you know what? It really is a great feeling -  I'm glad it's back!

Don't be scared to try SDS if you get the chance - reach out and grab it with both hands!
(((hugs)))
Maz x

Scotlands Carers Parliament, difficult decisions and Respite too...

Hi guys, it's been a busy week!

The sun has returned so it's also been a sunnier, more positive time too! Isn't if funny how a little sunshine can brighten the mood? I always find grey days make for even greyer moods so I like to catch the best of the sunshine anytime it pops up really!

The Carers Parliament is on Tuesday, it's the second time Carers from all over Scotland have come together to discuss the issues they face and lobby our government for a better deal.
I'm not making it to the Parliament this time as I'm...double booked!

I found out Jesus Christ Superstar was coming to the new Hydro in Glasgow.
It's only playing for one night and Coo and I have wanted to go for years so I booked it way back in January!


Once this years Carers Parliament date was confirmed, I knew it would be difficult to say the least! I thought hard about things, tried to find a way around it, to jam it all into the box and I nearly tried to do both too but...sense prevailed! lol
I decided, if I cancelled and went to the Parliament, Coo would be disappointed and for that matter, I would too! I eventually made my mind up and decided not to try for a Parliament place this year. It was more important for Coo and I to have our respite break and continue with our plans.

I had a wonderful time at the Carers Parliament last year! I spoke out, shared a little of Coo and I's journey so far and pushed for changes I felt were important for all Carers!
So...
Good luck and a big 'go get 'em' to the Carers from all over Scotland who are making their way up to Edinburgh on Tuesday.
Have a great day and have a brilliant Carers Parliament!
(((hugs)))
Maz x

Carers and Angels with only one wing...

Hi guys, yet again this wee quote has found me...

We are each of us angels, with only one wing. We can only fly by embracing each other.
Luciano De Crescenzo
It's such a pretty verse, I think it's so apt for Carers and I guess I just find it so very comforting. What's more, I seem to come upon it when I need it for some reason...Kismet I suppose or even divine intervention!

I honestly feel, it's by working together we achieve great things and however difficult things become...there's always a way, the trick is finding it! lol

So many of my Carer friends are struggling at the moment. The Welfare Reform laws and the hated 'Bedroom Tax' are biting hard for most disabled people and their Carers and it's causing such stress and hardship for people, who are at best in an already financially precarious position. Add this additional financial burden and stress, to the impact of caring full time for a loved one with complex health needs and it doesn't take a genius to work out it's a recipe for disaster! So just why doesn't our government see it too?
I'm trying not to be cynical but it's a damning indictment that the DWP took to Twitter today, to tell us all how fair their policy really is and how it's all so very necessary but for disabled people and Carers like me, struggling at the sharp end of these law changes, it's so very damaging, difficult and soul destroying at times!

Coo's still poorly but thanks to our SDS (Self Directed Support), Looby came to keep Coo company for the day and I made it up to Edinburgh as planned, for the 'Carers Forum on Welfare Reform' .

I'm glad I went, it's interesting to see how other areas are dealing with these changes too.
Wherever we find ourselves, we need to stand up and speak out for those who can't, learn to put differences aside and work together for change!

Stay strong where you are, don't give up whatever you do!
(((hugs)))
Maz x

Hoping for more settled times...

Hi guys, it's been a bit of a struggle again here this week.

I've had to dig out my hard hat and flak jacket again as Coo is poorly! His meds change of a few months ago, has caused some on-going problems and he's struggling so very hard this week.

Coo's core drug Epanutin was discontinued earlier this year and after a trying time, phonecalls back and forth to both Epilepsy Scotland and our Doctor and Coo's Neurologist, we discovered the drug was being made by another company and under a different name - grey area if you ask me! Anyhow, we chased it down and moved on but Coo's struggled more than usual over the last few months and he is convinced it's down to a change in the drug manufacturing process!
Now, I'm not so sure, we've had a lot on our plate recently with baby Jessie's Hip Dysplasia and surgeries and Coo's been so stressed too so all that could be impacting on, what is, a very precariously balanced seizure struggle at best but on the other hand, who really knows? He might be right! All I know is, it sure has been a struggle - that's for sure!

What to do?

Well, firstly we need more blood work done, just to see exactly where those drug levels are sitting on the safe range and then we will see.

Our GP thinks the additional seizure activity is probably due to stress and it may well be but one things for sure, with Coo struggling as he is currently, we need some questions answered. The Neuro is probably best placed to answer them so I've a feeling another hospital run is on the cards for Coo and I.

I'll hope for more settled times for us all and I'll keep you posted!
(((Hugs)))
Maz x