Back #stronger #sad still #caring...

Hi guys it's been so long since I blogged I almost gave up!
It's been such a difficult few months.
I got sick, my Rheumatoid Arthritis spiralled and I picked up yet another diagnosis (Fibromyalgia) to add to the mix. Coo got sick  - viral which increased his seizure level and he went back on that AED (anti epilepsy drug) see-saw again. you know the one, too much drug in the system major seizure activity and too little? Ditto!

Worst of all, my lovely 'fit as a flea' mum got sick and there's no easy way of sharing sad news...my mum died just after Christmas. My rock. The one who helped me through when I struggled and things were so desperately difficult, was gone and in a heartbeat things changed forever.
 Feelings
We supported one another, my dad, sisters, Coo and I but it's all been so very difficult.
How do you begin to recover from such a gut wrenching blow? Honestly? I still don't really know. The practical side of me took over and the things that needed done, were done but all the feelings and hurt were jammed in a box, tied up tight with a big bow and locked away for another day and I'm unsure if I will ever open that box an look inside!
Being a carer is like that, well it is for me, no matter how you feel or what is happening in life, the business of caring continues, it must and so it does...regardless! I think that's how you cope with all those issues that caring brings or who knows, maybe it's self preservation #carer style! I doubt it's particularly healthy but it gets us by in the mean times!
 Carers support
I still managed to support #carers and bless them, all my wee Three Towns Carer friends came to support me through mum's funeral - I felt truly blessed! Caring for dad, mum was a three towner too and with some bereaved themselves, it couldn't have been easy.
I think that's the benefit and real value of community groups like ours, that peer support and love shared when people really need to know they're not alone!
I'm sharing this pic as my dad always thought it was hilarious I took mum demo-ing in her seventies but she was game for anything really and the state of what is...just us makes me smile...I can still hear her shouting 'axe the tax' mega lols

When we work together, we truly are #buildingcaringcommunities
((hugs))
Maz x

2013, the good, the bad and the down right ugly...

Hi guys, 2013 had some good, bad and downright ugly points!

I want to end this post on a good note so we'll start with the bad and ugly side of 2013!
Like most Carers it's been a difficult year. For Carers, it's truly, never very easy but in 2013 there's been added pressure too that's for sure.
Our government's been less than supportive at times, their 'War on Welfare' and general uncaring attitude towards truly struggling disabled people and their Carers, has caused untold distress and suffering for people, like us, already paddling hard to just keep afloat!
Sad thing is, the up to date stats show there's very little financial gain for our government's stance but they're still intent on their path of social destruction and they've successfully used our media and their 'shirkers and strivers' rhetoric, to turn communities against one another - and that's truly ugly!

Coo and I have struggled through. It's been a difficult year, but also one full of trials and triumphs.
The trials?
Well, as always, there were many difficult times with real health worries throughout 2013.
*Health - living with serious long term conditions is always stressful and difficult!
*Family - Baby Jessie's very late, hip-dysplasia diagnosis was an additional worry, the on-going surgery problems she'd face too.

As if that that wasn't enough, we felt under siege by our own government.

The saga of Bedroom Tax and ATOS  all added to the stress and strain that was our 2013.



The triumphs?
*Health - I'm sure we triumphed - we're still here aren't we! also coming out the other side with wee Jessie -  3 successful surgeries and at last getting rid of the heavy Spica casts.
*ATOS - Seeing off the ATOS threat, wasn't easy, it was very stressful. Coo struggled most, the seizure activity kicked hard, we were stuck in at home on that scary roller-coaster ride again. I guess we just held on for dear life and hoped, they would see sense and the nightmare would end...and it did...for now anyway!
*Bedroom Tax - We so stressed with this issue!
We could not move - our house is adapted - we need the rooms we have, either for staff who come in to help or for respite sleep periods, to help me keep going but yet again, due to the stress of it all, we were plunged into chaos as Coo's seizure activity went off the planet and we again struggled!

We asked everyone we could think of, who had an influence to help.
Our MP raised our plight with the Prime Minister himself.
In the end, we secured a Discretionary Housing Payment but the saga that is 'Bedroom Tax' will raise it's ugly head again in March-April time.
*SDS - We used our SDS (Self Directed Support) care package and funding so successfully! In times of difficulty and struggle, when Coo was well enough to, we disappeared for a few days respite, turned off all the stresses, took a time-out and recharged our batteries for the next onslaught! I'm not sure how we'd have fared without this much needed help and support!
*Speaking out for Carers - I was happy to speak out, share my Carer story and try to encourage other Carers to seek help - we can only help and encourage people to see us can't we?

My granny used to say it's a good life if you don't weary and...she's right!
so...
Hello 2014 and here's to not wearying!
(((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

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