A new year, Carers, COVID & support...

Hi guys, it's so long since I blogged and life has changed so much but with a new year looming, I think it's time to reflect!

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! Gosh if only life was as simple as that now - COVID came and changed everything especially for disabled people and their #carers.

The stress of living with COVID all around us has really changed my perception. Life is hard for everyone but it's really hard for carers!  It's a constant stress and worry every time we have to leave home at all. We've been isolated before but this is on a whole different level!

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 and that's never more important or relevant than now!

I guess, most people used to take that kind a thing for granted...good health, I mean! Whilst everyone was well and busy hustling and bustling about with their life at such a great pace, they never needed to give a second thought to such things. Planning well into the future for work, holidays or pretty much anything they fancy and it's only when something happens to you or your loved ones that you really need to stop and think at all. COVID changed that. People were forced to stop and think of their health and that of their loved ones, even make choices on vaccines, wear masks and isolate and carers had to add all that into their already leaky boat!
Struggles...
Looking back, honestly? It hasn't been the best year for a lot of folk especially carers. We've both struggled with health issues and stress has swamped us at times. Sometimes I wonder just who is caring for who but there have been some good times too...really!

It's the little things that have kept us going. We were lucky we bubbled up with family and were still able to see our grand-babies (if everybody lateral flow tested ok). We would not have survived this isolation otherwise.

We were lucky our SDS (Self Directed Support) continued - we weighed up the risks and decided we couldn't manage without it so we were really careful, flow tested galore and just battened down the hatches and carried on!. 

Coo's seizure level's still really high at around 250 a month and he's currently stressing as there's some more health issues in the mix. My RA (Rheumatoid Arthritis) is still a bit of a struggle so hospital appointments are still a bit hectic but we're hanging on it there! There's been lots of stress but we're coping!

On the plus side, 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 with the vaccines and flow tests things are a little bit better than they were this time last year and that's a bonus!

Let's hope 2022 is kinder to us, stay strong and stay safe friends ((hugs)) Maz!

A look back over 2012...

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

I used to get a bit stressed at the thought of a new year coming, 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 it's 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!
While 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! lol

Looking back, we've been on a bit of a journey this last year.
2012 hasn't been a bad year, it's been a good one...really!
We've had some problems with meds and side effects and the seizure level's still really high at around 250 a month but we're managing! There's been lots of stress but other things have buoyed us up too!

** Coo's no worse and not nearly as bad as the dreadful 30 siezures a day all through 2007 - 8 and most of 2009! 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!

Over the last year, we've switched to a SDS (Self Directed Support) care package and it's made such a difference! I've blogged about some of the doors this has opened for Coo and I.
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, we've managed to have a wee holiday and some time out with some days away too but by far the most fun we've had is with the two cycles we bought!
Who knew we'd enjoy cycling so much! lol
When Coo's well enough (and weather has allowed us!), we've managed to get out for a wee while in the fresh air. Coo's had lots of problems with infection and high/low white cells for the last few months and usually that would mean, avoid crowds and stay home but...not this time,  we managed a wee while out on our bikes in the fresh air and felt the benefit for it too!

I'm still having fun with crafts and in the garden too although my tomato growing was severely hampered this summer as we had very little sunshine! boo! hiss!

**The main three highlights of 2012?
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!
There's a ways to go, that is true but slowly, things are beginning to change and for the better!

**Another highlight is our wee holiday!
After so many years I managed to go with Coo on a proper holiday! What a wonderful experience this was for us both and without the next 2012 highlight (our SDS package), this would have remained an out of reach dream for both of us!

**The other main highlight moving to SDS?
It has to be the change! Well the push even ('cause we were scared to risk the support we had!), to move over to SDS! Gosh that was a good move! why was I worried?
I guess it was fear of the unknown and risking the help we already had - what if they said no also the re-assessments and the stress - it was the devil to set-up but has since proved it's weight in gold!

...so it's almost goodbye 2012! I have to say, I'm feeling more supported and in a happier place than I've been in a long time and I'll remember 2012 as being one of the good years!
That said, I'm happy and optomistic about the new year ahead!

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

(((hugs)))
Maz x

Reflection on 2009...

Hi Guys, I found these questions on Carer, worker, mother, wife's blog and found them interesting so I've decided on a little 2009 reflection myself...

What was your biggest triumph in 2009?
Getting my Carer poems published with funding from NHS

What was the smartest decision you made in 2009?
To employ some time managment.

What one word best sums up and describes your 2009 experience?
Roller-coaster!LOL

What was the greatest lesson you learned in 2009?
If you try...sometimes, you get what you need!

What was the most loving service you performed in 2009?
Supported my mum, made her smile and shop! during her own health issues this year.

What is your biggest piece of unfinished business in 2009?
Carer poverty is still very much an unfinished issue.

What are you most happy about completing in 2009?
The march down the Royal mile and speaking at the parliament rally.

Who were the three people that had the greatest impact on your life in 2009?
*Coo, who constantly struggles and all with a smile that reminds me every day why I love him.
*My mum, she's battled with cancer this year and smiled on through tough times too.
*Looby - without her willingness to help, I'd never have any respite or sleep time!

What was the biggest risk you took in 2009?
Signing up for a local island sponsored walk - I didn't think I'd make it all the way around the island but I did...eventually!

What was the biggest surprise in 2009?
A wonderful gift of a relaxing spa day from Coo's mum!

What important relationship improved the most in 2009?
My Dad and I, we've always been close but he was so proud I spoke out for Carers at the Parliament!

What compliment would you liked to have received in 2009?
I like your Carer prose - very powerful...and I got it too from a work colleague!
What compliment would you liked to have given in 2009?
To Coo - you are everything, your star still shines brightly, you're still the one and I love you.

What else do you need to do or say to be complete with 2009?
I'm not sad 2009 has gone.
It's been a bit of a roller coaster ride for sure but we've both come out stronger than ever and still with a smile too!
Speaking of which...
Now, do these birds look like a pretty cool smile to you? LOL

Keep smiling and stay strong!
maz x