Slainte and sore fingers...

Happy new year, and in this neck of the woods we say...

Sláinte (SLAHN-chə) literally translating as "health"

I hope we all have a happy , healthy and peaceful year this time around!
It seems 2013, has not yet finished with us!
It's kinda been a year full of wee mishaps and true to form it's going out as it came in - I jammed my finger in the car door earlier and boy does it hurt - Ouch!

I hope this is the last wee mishap 2013 throws our way!  I just knew when I last posted about avoiding A & E this Christmas it just might be asking for trouble! A well, it's done now!

There's only a few hours left of the old year and we'll be welcoming in the new so good health, good fortune and...aw the best, when it comes - Slainte mhath!

(((hugs)))
Maz x

Christmas, SDS, Respite & Time out....

Hi guys and...Happy Christmas!

We've had a lovely time and this year, we successfully avoided the A & E dept. at the local hospital too so... Result! lol
We even managed to take a Respite break, a wee Christmas time-out up to Edinburgh for a few days! Woo hoo
Coo get's very stressed at Christmas. He really struggles with all the hustle and bustle so if we can, I try to break up the Christmas period with a few days away and Edinburgh is so lovely this time of year isn't it!
The whole place was wintery and beautiful. All twinkly and Christmassy and really, just a fun place to spend a wee few days away from all the busy Christmas shopping frenzy!

While away on Respite, we never shop!
I don't think we were in a shop from we left until we came back home! lol I guess that's kinda why we like Edinburgh, there's so much to see and do especially if like us you want to avoid the Christmas shopping and panic buying side of things!
We stayed in the Travelodge in Rose Street - Coo's comfortable visiting there and it's central too so it's a good choice for us. We visited the Christmas Markets in Princes gardens and sipped hot chocolate under the stars mmm! It's such a lovely place to have a wander and just soak up the atmosphere and enjoy all the pretty things all around - love it!

Next up, we visited the... National Museum and we had such a brilliant time!

There's loads to see and do, from stars and space stuff, to natural science and gadgets, it's got the lot and it's all free! How cool is that?
Check me out star gazing - it sure was fun! lol

 We ended our Edinburgh adventure with a visit to the Lyceum Theatre for a wee bit of culture and a sprinkling of Christmas Spirit and feel good factor - we went to see Dickens' 'A Christmas Carol' and it was wonderful! Songs, music, a lovely Christmassy story and...snowflakes all around us - it was totally awesome!

We're so grateful to our Local Authority for their support and the SDS (Self Directed Support) funding, which makes much needed, regular, respite breaks like this one possible.

We have both benefited tremendously and are so very impressed with this new way of providing care and support for not only Coo as a disabled person but for both of us!

Our quality of life is so much better.
In difficult times, just knowing funding for Care and Respite is there when we need it makes things a lot less stressful and so much easier to manage.
SDS has made such a positive difference for Coo and I that my Christmas wish is, a hope for all Carers to get the chance to try SDS out for themselves.

Keep strong and take care of you!
(((hugs)))
Maz x

From Panto to Power of Attorney...

Hi guys, it's always a bit of a roller-coaster ride and none more so than this week!
Yesterday, my wee Carers Group had a Christmas Pantomime date! Oh yes we did!

This year it was...
Jack and the Beanstalk!
Christmas can be a difficult time for Carers as most times, there's little in the way of respite or holidays to speak of and sometimes thoughts crowd in and it can become a very quiet and isolated time too. There are 18 Carers in our group and we decided around five years ago, we would always try to make it to a panto at this time of year.
One wee fun-time out together, just to forget the worries of caring and have a laugh and a wee release for a few short hours.
A really happy time with lot's of laughter all around! In the words of Wallace and Gromit...it was a grand day out! lol

Onto the Power of Attorney...
Remember I posted about Carers Rights Day and our local Carers Centre having a lawyer on hand for free advice? and that I'd spoke to her about setting up POA (Power of Attorney) Well, today was the day! We had a visit at home, discussed all the information and decided to progress this now. It will be important, especially the welfare side of things should Coo become incapacitated and need some help deciding on medical care - wish we'd had this in place last time as I'm sure it would have made things a whole lot easier!
Anyways, we are sorting it out now!
We've taken the first step, which is to apply for Legal Aid.

I'll let you know how things go as I think most Carers and disabled people, would probably be better off with 'Power of Attorney' in place- especially the welfare side of it! I guess it'll be interesting to see how easily (or not!) this process turns out to be, so I'll keep an update going as it progresses just in case other Carers are thinking of setting up POA too.

The life of a Carer sure is a roller-coaster right enough! I've gone from laughs to Legal in one day! lol

 I hope you get a wee time out or even a wee giggle too this week!
Stay strong
(((hugs)))
Maz x

My Carers Rights Day, Strategy, Nails & Networking...

Hi guys, my Carers Rights Day went really well and I had some fun too!

Luckily I had respite arranged for the day so I didn't need to do the usual crash and grab, top speed and rushed affair so could relax and enjoy things, in fact the whole day had a leisurely feel to it for a change!

I got over to the Carers Centre (it's a few towns away!) for ten o'clock and started the day with a nail job and not the usual kind for me (hammer, usually followed with sore fingers!) but the shiny, pretty fingernail type! While the nail lady shaped and painted them pretty, I had time for a wee think!
It's a long while since I made the time and had such a simple thing done for me. For some reason I got quite a kick out of it, I didn't think I would and I nearly didn't book a slot at all but I'm so glad I changed my mind - I felt really great afterwards!

It's so easy to just keep putting yourself last in the 'need to do list' and I just realised, I do it all the time! For Carers, there's always a big pull on your time and emotions, it's easy to forget to make time for you!
I mean, I could have used some respite hours and booked a pampering slot a fair few times over the last year but appointments, meetings, general busy-ness and Carer-life tasks, kinda got in the way!
so...
I've decided I need to try a bit harder!

It was Carers Rights Day so I'd more in mind than nice nails and lunch! There was a legal advisor on hand from the local lawyers office with some free advice so I had a meeting to at last begin the POA (Power of Attorney) process and never one to miss a chance to network and push Carer issues where I can! I managed to raise some concerns with both the Council's Carer Champion and head of Social Services! They're both nice guys who are interested and want to help Carers and people with disabilities so I'm confident they'll take the issues  forward so...watch this space!
Last and definitely not least...
Our Local Authority launched the Carers Strategy!

This is the strategy, written with the input and full involvement of Carers from our local area. Carers were involved, from the initial direction this document would take, right through the process and through the Carers Strategy Group, hopefully to the successful delivery of the services it holds!
It's a good strategy for Carers, it's in language people can easily understand but more importantly it offers good support and information! Will it be successful? Will it deliver? We will see!

So what were the day's highlights?

*I had some pampering and felt better for the experience!


*I raised issues with those in a position to address them and...I'll chase down answers too! lol

*Our Carers Strategy launched! That's the one other Carer friends and I helped shape!

 All in all, I had a good Carers Rights Day this year!
Hope you managed a wee time out too!
(((hugs)))
Maz x

Carers Rights Day...

Hi guys, Carers Rights day is almost upon us again, it's on Friday!

I guess, it's the right time to look back and see if, for Carers, anything has really changed!
Are we still fighting the same fight and struggling on alone or have we Carers gotten a better deal?
I really feel, that kinda depends on where you live and if your local Authority has embraced SDS (Self Directed Support) or not!

Coo and I have been lucky!

Where I live in Ayrshire, the Local Authority has been very pro-active and supportive so SDS is a reality here for over 50 families who agreed to test the water and try it on for size! The word from the Carers I've been in contact with? Well, it seems most have had a positive experience and this new way of providing care and support for both the disabled person and their family has worked well!

I've definitely found SDS a positive experience and to be totally honest, it's the most effective support Coo and I have ever had! Just the comfort in knowing help and assistance is there when we need it, not having to worry all the time about where funding will come from or even if there will be enough in the pot, has relieved a lot of pressure and stress. The flexibility that has allowed us respite breaks when things have been at their most difficult too, have made things a lot less stressful and easier to manage.

It's not so everywhere though! In fact it's really a bit of a mixed bag and that dreaded postcode lottery comes into play. On my Carers Scotland Committee team, I know Carers in Highland and in central areas, who have moved to SDS and are having a good experience too but too many Carers in other areas are still struggling on alone!

I've found the biggest strain this year has not been from the usual sources, neither health, caring nor disability - it's been from our own government and media! Just how sad is that!


The people we elected and trusted to support and care for the most vulnerable in our society have let us down! Their aggressive 'War on Welfare', their attempts to dismantle the much needed support and funding from our Welfare State system, has by far been the greatest struggle currently faced by Disabled people and their Carers!

Our Government and media seem to forget, we Carers are 'working' at least thirty-five hrs every week and we're paid £59 Carers Allowance,
(just over £1 an hour!) but we Carers save the government as much money as they'd need to fund another NHS!
Please try to remember this before you attach the horrid 'Benefits Scrounger' label!
Carers need support not scorn!

Keep faith in better days and keep strong!
(((hugs)))
Maz x

Welfare Reform Impact Research, Carers, disability & that roller-coaster ride...

Hi guys, it's been a bit up and down again this week!

Remember I agreed to be involved and share our story with the Welfare Reform Impact Research people? Well today was the day! There were two researchers today.

Thankfully they were both friendly and easy to talk to and although there were a lot of questions to get through, it was a good experience. I felt they listened so far so good!

It's never easy being involved with this type of project but it's so important! Only by sharing our stories and honestly telling our Government just how badly current Welfare Reform changes are hurting disabled people and their Carers can we hope to find and shape a better way!

We had a bad night, there's been an increase in seizures too and Coo's developed a cough and temperature so I really wasn't surprised when our GP phone about the blood tests from last week. Seems there are yet more problems for Coo and I. The AED (Anti Epilepsy Drug) levels are up, the white cells are up and the blood calcium levels are on the low side too.
Coo will need more tests and the calcium levels will need to be monitored for now as for the Phenytoin (AED) levels? Well, he is now right out of the safe range and not for the first time - but an infection or for that matter, anything much else going wrong, really causes the levels to fluctuate!

Now he has a temperature and sniffle, we've decided to batten down the hatches and sit it out for a bit! If things deteriorate we'll adjust the doses again but it's not unheard of for things to settle so...for now we wait!

This time last week we were having a lovely respite day at Glasgow's Christmas Celebration and today? Coo's been asleep and seizing all afternoon! Being a Carer sure is a roller-coaster ride! I'm off to dig out my hard hat again as I've a feeling I'm going to need it!
Let's hope for some more settled times for us all!
(((hugs)))
Maz x

Good News, Good health and Good cheer...

Hi guys, it's been good news all the way this week!

Baby Jessica got the big heavy Spica Cast off...

It'll take some time, she's no mobility...yet...but that'll come, with time and patience - The main thing is the Spica cast is...all gone!

Coo was poorly all last week, stress is a major trigger and we were both so worried about baby Jessie it was bound to have an impact!

Thankfully this week, things have settled and been a bit more stable seizure wise so I guess it's a big...woo hoo all around!
Ages ago, long before we knew Jessica's Spica cast was coming off this week, we applied to the ballot for tickets to 'Glasgow's big Christmas Switch on Event' and this time, we were lucky!

With all that's been happening, I wasn't sure, we would be able to make it at all but things have fallen into place and we are  going to go - I'm so excited! lol



We'll use the Travelodge again, Coo's comfortable there and if things get too much, it's just around the corner for a pit-stop!
We're so grateful for our SDS (Self Directed Support) care package, it's what makes much needed timeouts like these possible!

We're going to wrap up warm, just hope it doesn't rain too much and if all else fails...drink lashings and lashings of Hot chocolate! Sounds like a plan to me! lol

I hope you manage to have some Christmas light fun where you are too!
Keep cozy!
(((hugs)))
Maz x

Research Welfare Reform impact ...

Hi guys, I'm busy again and back on the campaign trail!
This time, I've agreed for the next three years, to take part in a research program regarding the effects of Welfare Reform.

 

Quote...

The aim of the study is to explore the impact of welfare changes over time on a range of households in Scotland. The project is being carried out by the Employment Research Institute, Edinburgh Napier University and the University of Stirling on behalf of the Scottish Government. 

I think it's important for people to speak out, share their experiences both good and bad and as both Carer and disabled person, Coo and I, have had to struggle through and find a way to navigate the recent sorry system of changes!
The initial issues and stresses of the move over from Incapacity Benefit to ESA (Employment Support Allowance).
Next, the seizures, stress and the hassles of coping with the ATOS people and their...'you need a medical' - 'no you don't'...'yes you do' approach!
Last and by no means least, our struggle with 'Bedroom Tax' and securing a HDP (Housing Discretionary Payment).  Both our MSP Margaret Burgess and MP Katy Clark helped us through what was a difficult time. Katy raised our case in the commons and we did get a reply from David Cameron PM.

I am ashamed of the rhetoric the UK Government and media have used in relation to Welfare Reform. The 'Scroungers and Strivers' rhetoric has only succeeded in fuelling anti-disability feelings, further alienating disabled people and dividing our communities.

I honestly feel, most of the stress and issues created by this Welfare Reform process could have been avoided, if the policy had been planned and executed fairly in the first place!

It seems so incredibly unfair that most of the 'cuts' have fallen disproportionately on families with disabilities and their Carers and it's important the true hardship people find themselves in through no fault of their own is shown!
It's so very important to speak out if you get the chance!
(((hugs)))
Maz x

Carers, Flu jabs and the Neuro too...

Hi guys, How have things been this week?
Well, Coo was doing ok!
His temperature stayed down and despite a wee sniffle he felt on the up so...

This week, we did in fact get our flu-jabs done! While this usually means a few days at home and an increase in seizures for Coo, it also means we can hopefully, avoid nastier complications further down the line! For him, Flu usually means a major crisis and a prolonged admission to hospital.
In our case flu jabs are not an option...they're a must!

It's been all go here, we had a visit to Coo's Neurologist this week too! He's a real nice guy and always listens so Coo feels comfortable raising any issues with him.
Anyways, we've been concerned over the last few months as Coo's had a lot of muscle and joint pain. He has pain due to all the limb jerking during seizures...fair enough and he uses a muscular pain relief but he's been in a lot of pain lately so he decided to speak to the Neuro, just see what his thoughts, (if any) were, on the subject. Turns out he had a lot of thoughts and all drug related!

Long term drug therapy, especially poly-therapy, is not much good for anyone really and Coo's been on AED's (Anti Epilepsy Drugs), for over thirty years. It seems, amongst the many side effects of his meds are Osteoporosis and bone density problems! This may well be contributing to his current pain levels so I guess we have, yet something else, that now needs checking - with a bit of luck it'll only need a blood test!

I often quote...

Carers...
'We are all in the same boat so we each must take turns to paddle!' 

I'm paddling hard for the moment but it's sure nice when someone else lends a hand at the oars!

Stay strong and keep paddling your boat!
(((hugs)))
Maz x

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

Timeout, Anti-Bedroom Tax and the U.N. reporter...

Hi guys I've been on a wee overnight away with Coo!

I always like to make sure Coo and I do something together when I come back from my Respite break so with Joseph, being on in Glasgow at the Kings last week, just what to do was an easy choice this time around!

It was brilliant!
Great fun and a great show too - Coo and I had a blast!
We had some luck too, we usually sit in the circle part of the theatre but it was closed that evening and we got a free upgrade...Result! lol

When we came back, I discovered I'd been invited to speak to the United Nations Reporteur currently here in the U.K. assessing the effects and issues surrounding the hated 'Bedroom Tax' legislation. - of course I agreed!

I am both saddened and angered in equal measure around the issues and damage this piece of legislation has brought into the homes of the most vulnerable people in our society. So many people affected in what is already a so delicately balanced, precarious and difficult situation at best.
It truly is, only an uncaring government that could and would inflict this type of damaging policy on it's own people.

My report and case study has now been submitted to the United Nation Reporter and I only hope in some small way, it helps speed the demise of this abhorrent  policy and the sooner the better!

If you're asked to speak out, please take a deep breath and just tell them how it really is!
It's only by working together we can make a difference!
(((hugs)))
Maz x

Respite's so important for Carers...

Hi guys, I've been away for a few days respite - woo hoo!

I went to Blackpool! It's my usual choice, for a few days away and my mum comes along to keep me company.
Although not everyone's cup of tea, it suits me just fine, I can go shopping, tour the lights, have a whirl on a tram and best of all, I can sleep for three whole nights in a row...Woo hoo!
Now, most people take this kinda thing for granted but it's not so for Carers!

Most of us really struggle to get enough rest and tiredness is usually a Carers constant battle!
We are so lucky to have an SDS (Self Directed Support), care package in place. It means we don't have to panic about funding when things are tough and I need a break. We access the funding, sort out additional care (Looby comes to stay with Coo while I'm away on Respite) and I just...book a break!
Being so much in control and having choices, has made all the difference in the world for Coo and I!
so Mum and I...
shopped till we dropped, drank tea and ate cake in numerous tea-shops, slept in cosy beds and had some fun, in fact...it was great!

I found a craft shop too!
I picked up some lovely Christmassy fabrics and guess what? While speaking to the wee man in the shop and on finding out I make patchwork baby quilts, he insisted I take one of his sample books for free! How cool is that!

All-in-all I had a brilliant time and have come back all zingy and refreshed and ready to take what life throws!
I only wish all Carers had access to some respite, it's the glue that holds things all together and helps us Carers to continue, in what is always a challenging role!
(((hugs)))
Maz x

NHS, Review, Support & Action...

Hi guys, I've been busy!
Things have moved on apace with our NHS and Hip Dysplasia issues and thank goodness for that!

We (Looby & I), had a meeting yesterday with NHS people from both Community Nursing & Pre 5 Childrens Services and Midwifery, to discuss the issues raised at the NHS annual review.

We raised our concern and said we really felt, there was a lack of information surrounding Hip Dysplasia (DDH) in general - just what do you need to look for?
We discussed how this could be addressed and improved and I'm pleased to say, actions were discussed and agreed surrounding further training for staff, additional awareness raising and general public information sheets & posters.

Best of all, they agreed to supplement the information given to new parents to include a wee section on Hip Dysplasia symptoms and what to look for as we had suggested. We thought the most helpful information would be, letting people know to check the wee fatty folds are symmetrical on the baby's thighs. It's a clear visual marker the hips are displaced and could need attention and it's so easy to see.

Sadly, we only found this out, while searching for support after Jessica had been diagnosed at aged18 months! We quickly realised to our horror, we had noticed this with baby Jessie as early as the first four weeks after her birth and thought she was just a 'wee chubby baby'- we just didn't know it was a problem!

With the additional training for staff and the proper info on the signs to look for given to new parents, hopefully we'll start to catch these wee people quickly and really avoid the need for painful, invasive and expensive surgeries and...if this happens, I will be a happy Maz...in fact, we'll all be happy!

(((hugs)))
Maz x

Disappointed.com...come on NHS!

Hi guys, I'm on the case again!
Remember when I posted recently about raising an issue at our NHS annual review? It was regarding the lack of information from NHS on Hip Dysplasia.

Well...I'm disappointed.com!
The NHS people have not bothered to contact me or update on this issue so...I decided to give them a wee reminder in the hope they will move quicker and in the right direction!

First I contacted Public Health Minister Michael Matheson, (he hosted the review!), just to let him know, I had not yet had any further contact with NHS. Then I emailed the only Health board contact I had and asked for some help tracking down just whom should I be talking with - I'm nothing if not resourceful!

I hope they are taking this issue seriously as with four in every thousand babies born with Hip Dysplasia that's a lot of wee people with hip problems that need checked and if they're like baby Jessie and missed at the start, parents need to know the symptoms and just what to look for!

It would be nice to hear from them soon, one thing's for sure...
I'm not giving up - it's just too important!



Remember just like their logo says the NHS belongs to us all!
If you come across something you're not happy with, particularly if by intervening you can save someone else from pain, take a deep breath and...challenge, challenge, challenge!
Keep strong,
(((hugs)))
Maz x

Difficult day, Surgery and Struggles...

Hi guys, it's been a difficult few days here.

Baby Jessie's surgery was yesterday.
Coo struggled to cope with the additional stress and I struggled too with the additional seizure activity but after the wee one's surgery was over, things began to settle so all in all we coped!

I think the angels were with us and I kinda like this wee picture.
I mean, it has my two favourite things in all the world...angels and best china tea-cups - what's not to like! lol

Jessie was in surgery for over six hours, they didn't manage to complete all the work required so she will need yet more surgery at each cast change - every six weeks or so. We're not out of the woods yet but at least the first steps have now been taken and we're hopeful and positive about things!

Looby and Steven coped really well too, on what must have been a difficult day for them. We really wish it wasn't happening at all but it is what it is and I think we're just glad this is now moving and things can start to improve for wee Jessie.

Coo and I will get in to see them all today for a wee while and that in itself should help Coo calm down. It's at times like these, you realise how important family life really is and you kinda hold tightly to the belief things will all be ok!

For anyone else going through this worry too... a huge (((hug)))
Keep strong!
Maz x

Coping, stressing and finding a way...

Hi guys, I've been dreading the next few weeks arriving and here they are upon us!
Baby Jessie's surgery is fast approaching and it's been a struggle. We have a seizure increase again and Coo's been so very poorly this week. If I'm honest, it's not really surprising, the week before Jessie's last surgery, was just the same. 
Stress is a major trigger for Coo and always results in increased seizure activity and a bit of a struggle but the rescue meds (Midazolam) are in place and we're coping.

What to do?
Well, we could stay home and hole up and try to ride things out - we've done that before...often! or we could try to diffuse things a little with a change of scene and hope they will settle a little.

I chose to opt for the latter this time and decided to book a couple of tickets to a show in the Kings Theatre Glasgow  Coo is quite comfortable visiting there now so it's a good choice and with a stop over at the Travelodge, it should be managable!

Everything you do, if you have disabilities, needs additional planning, things able bodied people just take for granted need careful planning! You always gotta stay one step ahead and have an answer to all the 'what if's' but one thing I've learned is...if you get bogged down in all the negatives you never manage to soar with the positive things in life anymore!

I guess we all find a way, we have to...there's a big difference between existing and living!

Our SDS (Self Directed Support), has really helped us find the positives again and that's been the most valuable lesson of all!

 

 

Why was I so afraid to make the switch and try directing our own support? I guess we all worry about the unknown and don't want to risk what little support we have, incase it all goes wrong!

Looking back, it really was the best decision, scary at the time but so very worth it in the end!
Don't be afraid of SDS if you get the chance to try it, reach out and grab with both hands!
(((hugs)))
Maz x

NHS Review, Hip Dysplasia and Carers...

Hi guys, I've been busy again!
This time I went with some of my wee Carer Group to visit our NHS annual review and had a chance to ask questions and raise some points!

Well, not being the shy type and still adjusting to the very late diagnosis of baby Jessica's Hip Dysplasia and also the fact Minister for Public Health Michael Matheson, the Chief Executive and Chairman of Ayrshire and Arran NHS were all there, meant I decided to raise the issue.
I kinda had no choice really, it's important and if the information is not getting to families  who need it something is wrong!

I explained, four babies in every thousand are born with Hip Dysplasia, it's nobody's fault, it just happens but the quicker it's found and treated the better for these babies. I also explained, once Jessica was diagnosed, we went over all the health information the NHS gives to new parents and could not find any information there either! I asked them to take forward this point and include even just a paragragh on Hip Dysplasia symptoms, just what to look for would be good!

It's so important! If this condition is found early, there is seldom the need for surgery at all! The baby wears a brace or harness for a few weeks and in most cases it fixes on it's own but if it's missed, these wee ones need extensive and expensive surgeries, physio and rehab to try and rectify things as has happend with baby Jessie.

I'm pleased NHS Ayrshire and Arran are going to follow this up and I'm so glad I had the chance to speak to those who can address this issue properly and quickly too!

The other point I manged to raise was this one...

We had a crisis and needed emergency admissions seven years ago. Things did not work well and as a Carer and disabled person with complex difficulties we were not listened to at all. Coo's massive seizure activity could not be contained in a ward situation and as his care needs were so complex, it just didn't work and we were left feeling so very unsupported and alone! Last year, we needed another admission and we were both listened to and supported to enable, what turned out to be a positive and supported experience this time around! The changes we found then were heart warming and I wanted to share this positive experience and hope things continue improving too!

All-in-all the NHS review of our area had a lot of positives to share, there are things that need work but it was a positive meeting and I came away with a good feeling about how things are going!

If you get the chance to raise your points and question those who can change things, remember...deep breath and just go for it!
(((hugs)))
Maz x

Stress and shonky eyeballs...

Hi guys, remember that hospital visit I cancelled last month?
Sometimes, Carers health comes last...
Well, I did promised to do better and I did, kinda! I had to take Coo with me as Looby was still nursing baby Jessie and the chicken pox!
It's a long wait so it was stressfull and a hassle but we managed!
Bearing in mind, I wasn't having any eye problems what-so-ever and I didn't think the appointment was even necessary in the first place, it was the optician who referred me and I fully expected the specialist to say it was all fine - I was in for a bit of a shock!

I had drops that didn't sting and my eyes were probed and then more drops that did sting and a diagnosis of sorts!
Ok maybe the eye-ball jabs weren't as big as this wee nurse's but they kinda felt like it! lol

Turns out, the optician I saw month ago was doing his job correctly after all! It would appear the reason I kept failing the field view vision test is because my optic nerve is tilted and just what this means for me is anyone's guess!
I may even have been born this way and as I've never had proper vision in the effected section I just didn't know!
Well, what happens next?
Hospital visits every few months to check things are not deteriorating and wait and see!
Yet more stress to add to the rest - Joy!

I never rains but it pours and it seems to be in torrents at the moment! So I have a shonky eye-ball! I'm thinking along the lines...it's the same one I had yesterday and the same one I had last year and even last century! It's not bothering me at all so how bad can it be?
You know what? I'm just trying not to worry too much...I think I have enough on for now as it is!lol

What is it my granny always said?
What doesn't kill us, just makes us stronger! I'm sure she's right!

Onwards and upwards people!
Here's to keeping strong!
(((hugs)))
Maz x
***Just incase anyone else doesn't know - my daughter asked 'What exactly is shonky mum?
It's a word of two parts - being both shocking and wonky - pretty apt in the circumstances! lol
Glad that's cleared up then!
(((hugs)))
Maz x

Chickenpox...

Hi guys, what a week we've had here!

It's official!
Wee Jessie has chickenpox and millions of 'em at that - poor wee soul!
We were so annoyed at the time but it's just as well her surgery was cancelled last week wasn't it! A full body spica cast and the chicken pox would have been just awful!
Things really do happen for a reason don't they!

The new surgery date is the 20th of August.
Looby, Steven and Jessie all went for the pre-op last week - before the pox came, I might add!- and met with the surgeon to discuss things further. I've gotta say, I was shocked when they told me it's a seventeen and a half hour operation! I guess, well I was really hoping, it'd be a nip-and-tuck kinda thing with a bit of maneouvering and maybe a couple of hours at most but we're under no illusion now. I fear, it's a big operation and a long road ahead for wee Jessie.
It is, what it is and we'll get there!

Coo's struggling on, he's been sleepy and seizing most of the day but he's hanging on in there and me? I feel like I'm mentally battening down the hatches for the next onslaught!

In a positive moment during the week, I decided we needed a wee time out so...
I booked a theatre night away for Coo and I!
Coo likes a wee jaunt up to Glasgow every so often and we both benefit from the change of scene for a wee while!


It's always a bit touch and go, if we will make it to these things but more often than not, with careful planning and plenty of rest time, we usually manage! It's just really something positive for us both to look forward to and aim for.
Our SDS (self directed support) care package, makes it so much easier to cope with things especially when we are struggling.

It's so great to know support is there and within our reach, when we need it and what a difference that's made in itself!

We're trying to stay focussed on the positives and just keep it all together! The main thing is we're doing ok and I hope you're doing ok too, where you are!
(((hugs)))
Maz x