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Thursday, 13 April 2017

Struggles, Stresses & Shingles...

Hi guys, yet another stressful month here!
Stresses...
Still no decision from DWP on his PIP claim/assessment so things with Coo have been a blast...again! The stress, health hassles and continuing seizure spiral sure took it's toll and Coo's AED's (Anti Epilepsy drugs) hit toxic levels last week.
We had blood tests done to check things in the afternoon and by nightfall, ADOC - the out of hours NHS services - were on the phone with the toxic news and a 'reduce the meds now' message! We were back on that dreaded AED drugs see-saw again!
Our already leaky boat, just got a great big bit more leaky - we coped or I thought we had. We know the drill, drop doses, contact the Neuro and let him know we're struggling, hole up at home -I call it hard hat and flak jacket time- and wait it out!

Coo's neurologist, Dr Tyagi's great! We've known him for ten years, he's patient and kind and really listens to him, he's an all around great guy! He sorts an emergency appointment and between us we sort out a plan of action and begin to move on!
Shingles...
Blood results are better this week so panic over you'd think? NO!
I got poorly with the shingles! What the heck!?! I'm seldom proper ill! I think it was probably stress related and a mixture of everything going on. Thankfully I'm on the mend now and Coo's doing better too so result...woo hoo!
That circle of support is so important for Carers especially when they are poorly!
We're lucky the SDS (Self Directed Support) care package, kicked in seamlessly and Looby - (our PA) came to stay for an extra few nights until I felt a bit better and we all lived to tell the tale! lol

I think that's really the difference it makes when Health & Social Care get it right! Carers have some much needed help and feel supported, they recover quicker and are able to cope with the situation and from an economic point of view, costly hospital admissions are avoided too as with proper support it's all managed that much easier at home!
**It would have been so much more difficult coping without it that's for sure!**

I'm hoping for a more restful time...a few weeks stress free would be nice for us all though wouldn't it!
Stay strong
((hugs))
Maz x

Sunday, 19 March 2017

Hard hats, PIP, DWP & Health hassles...

Hi guys what a time we've had here!
Where to start...ok, we'll start at the top...

It's been hard hat hell here! Coo's seizures spiralled out of control. At it's worst point this week, we were back up to 30 seizures a day and back on the dreaded rescue meds again...and just why was that? (pursed lips and sarky growl)...
Despite sending a barrow load of paperwork, copies of Coo's Social Services assessment of needs and four months worth of the dire seizure diary, a registration letter from our doctor (well...locum 1 yet another story!), and a supporting document from Coo's Neurologist too - now, you'd think that'd be enough wouldn't you? - but no! DWP/ATOS/Maximus/Capita or whatever they're currently calling themselves still decided they needed to face-to-face assess Coo and his disability! The stress triggered everything-and-then-some what a total nightmare! Anyhow, after a month of struggles dealing with the increase in seizures, moods and the rest, Friday and the DWP arrived at last. Thankfully the assessor was friendly and kind, spoke to Coo patiently and went over everything as quietly and calmly as possible - I think things will be ok, well I hope so but we've another 4 to 8 weeks to wait for a decision so we're still struggling on and making the best of things!
We need to work together!
Why oh why can't the DWP just ask you to sign permission, look in your medical file and speak to your consultant and save people with disabilities and their Carers from all the additional stress?
It would probably end up being a quicker more efficient way of doing things too but what do we know? eh?

If you're under review or moving from DLA to PIP get your info together, stay strong and try and fight your corner the best way you can!
((hugs))
Maz x

Friday, 3 February 2017

Fabby Feb, SDS, Carers Advisory and raising the Carer voice!

Hi guys, I just turned around and January was all gone so...here's to a fabby Feb!
Here's a clue...

 Oh dear...
Between Coo and I, we've been racking up hospital appointments!
Typically for January, the cold weather came bringing with it, the coughs, sneezes and seizure increases too. In between appointments, jabs, pills and potions (for us both!), we just pretty much kept warm and got on with things at home.

Now we've entered February, Coo's feeling back on the up again and that can only be good news for us both!
Caring is such a balancing act especially in winter, add into the mix some health issues of your own and it can be a bit of a hard time all around.
It's at times like these, it's so very important to have some proper support...it's the difference between drowning and struggling to safety and survival! For me, it means, I've still managed to get out and keep some interests away from home. Before we had SDS (Self Directed Support) in place, things were very different and I was stuck at home trying to hold it all together and struggling along for what seemed like ages!

SDS...so just what is so different?

Well, for one thing, I made it out for coffee and some support with the Three Towns Carers, now that might not sound much but support from other Carers who understand is crucial!
I also got along to the latest Carers Advisory meeting to discuss Health and Social Care developments and our 'Carers Appreciation Card' and I made it up to Edinburgh, meeting up with Carer reps from all over Scotland!
Without the flexibility and freedom of SDS this would just not have been possible! I would have been still stuck at home and I'd not have done my bit in making sure Carers voices are heard!

Keep strong and keep going as will I!
((hugs))
Maz x