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Tuesday, 31 December 2019

Carers review, SDS & more

Hi Guys, new year is almost upon us! Where's the year gone? I think it's time for a wee look back goes!

I used to get a bit stressed at the thought of a new year coming. I'd worry about the things I said I'd do and just didn't get around to. You know the kind of thing...lose a few pounds in weight, hold onto a few of the other kind of pounds and save for a rainy day...that kinda thing! lol

I still think, the most important thing being a Carer has taught me, is to slow down a bit and just take a breath! The world still turns just the same while you catch your breath a bit. Mainly caring has taught me just to count my blessings a little and be thankful for making it through the last year safely in the first place! LOL

I guess, most people take that kind a thing for granted...good health, I mean!
Whilst you are well and busy hustling and bustling about your life at such a great pace, you never need to give a second thought to such things. You can plan well into the future for work, holidays or pretty much anything you fancy and it's only when something happens to you or your loved ones that you really need to stop and think at all!

I think that's probably what I miss most. All the planning and looking forward to things, the certainty and order of it all. It sure was a lot easier when finance was the only issue to getting things done and we could both climb a mountain if we wanted to! On the other hand, this slower pace of life has it's upside too, we have both learned how to adapt and find a way - there always is one - it's just finding it that's the tricky part!

Looking back, we've been on a bit of a journey this last year. If I'm honest 2019 hasn't been the best year. We've both struggled with health issues and sometimes I begin to wonder just who is caring for who but there have been some good times too...really!
Ok, we've had problems with the meds - nothing new there!
Coo's seizure level's still really high at around 250 a month and he's currently stressing as there's some more surgery looming on the horizon, add to the mix we're still supporting my dad and my RA (Rheumatoid Arthritis) is still a bit of a struggle, it's hectic but we're hanging on it there! There's been lots of stress but other things have buoyed us up!

** Coo's no worse and not nearly as bad as the dreadful 30 seizures a day we've previously coped with! There are still crisis points and things are not brilliant by any means but they're better than they were and that's a bonus!

** With help, our quality of life has improved!
Our SDS (Self Directed Support) care package continues to make such a difference! I've blogged about some of the doors this has opened for Coo and I. Proper support really works, it can be life changing for people and strangely, it's not always the big expensive things that make the difference either, it's having the flexibility to make things work for you that's the key!

I've had some respite a wee while away with the girls - I didn't realise how much I needed a time out but it made such a difference, I came back feeling all refreshed and positive!

I made it up to Edinburgh for the Carers Parliament too and Coo and I managed a wee holiday, just some time out, some days away but so much fun!

Looking back, by far the most fun we had was with our cycles!

Who knew we'd enjoy cycling so much - I needed to adapt mine as I didn't want to give up cycling without a fight!
I'm hoping when Coo's well enough, the weather allows us and fingers crossed, my wrists hold up, we'll managed to get out for a wee while in the fresh air again. Coo's had lots of problems with infection and high/low white cells for the last few months, it's been tests, hospitals and issues galore and usually that would mean, avoid crowds and stay home but...not this time, we're hoping a wee while out on our bikes in the fresh air will lift our spirits and we'll feel the benefits too!

**The main three highlights of 2019?
Well, the first has to be the parliament visit!
I really felt so upbeat at the time, that things will change for Carers and in my heart, I still do, progress has been slow but again Scotland is leading the way with the new Carers Supplement - it's a small step but in the right direction!
There's still a ways to go, that is true but slowly, things are beginning to change and for the better!

**Another highlight is our wee holiday!
It's always stressful and difficult travelling with Coo but we did managed to get away for a few days on a proper holiday! What a wonderful experience this was for us both and without the next 2019 highlight (our SDS package), this would have remained an out of reach dream for both of us!

**The other main highlight? Continuing support with SDS?
Why was I ever afraid to move to SDS? We had such a struggle with this, I suppose, on reflection, we were just scared to risk the support we already had! It was and continues to be the best move we have ever made. It was the devil to set-up but has since proved it's weight in gold! it's almost goodbye 2019! I have to say, it's been a bit of a roller-coaster ride at times. The caring is tough.
With health issues acquired along the way it's never easy but I'm feeling more supported and in a happier place than I've been in a long time so that's a bonus for 2020 - the roaring twenties beginning!
I'm holding strong and remaining optomistic about the new year ahead!

I hope you're feeling happy too and...
'a' the best when it comes - Slainte Mhath!

Maz x

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