Appointments and time outs...

Hi guys, it's been another busy week, what with appointments, paperwork and just getting organised!

Ok appointment 1...

Coo's bloods are still problematic and he has an increase in seizures too so he's having more bloods done again this week. He just can't seem to catch a break at the moment. We're going to wait for the blood results and then... we'll regroup and decide just what to do. - we're coping and that's the main thing!

Appointment 2...Good news!

Remember my post about my Shonky eyeball from last year? - here's a reminder!  Well, I've been visiting hospital for the last year and now the results are in! No treatment required - woo hoo!  Turns out I have a tilted optic disc, it's been checked and it's nothing to worry about so...result!

I've one more appointment to go...and it's a good one! lol
I'm off tomorrow for a wee time-out and with other Carers too!
We're going on a visit to  'The Ayr Flower Show'

I've never been there before and it looks great and best of all? I'll be able to have a laugh and a fun time out with other Carers at a wee change of pace!
Thank you SDS (Self Directed Support) - Regardless of how things are, tomorrow, Looby will come keep Coo company and I'll get to poke around the flower show and most probably indulge in some plant buying! lol

I'm hoping for some sunshine and if not, well, there's always the wellie boots! lol

I'm faring ok here and I hope you're doing ok too!
(((hugs)))
Maz x

Carer Roller-Coaster ride & Harping on...

Hi guys, it's been an up and down kinda week. You could say, we're back on that roller-coaster ride again!

Coo's blood/drug levels are yet again problematic...
The safe range is between 10 and 20 and Coo's latest results? 24! - Ok, choices, do we reduce the doses again or do we stick, sit it out and see what happens?
We're not quite sure yet, Coo's seizures are no worse, he's stuck at around 10 a day but then again, it's been A lot worse and we coped. Only thing is, he's really sleepy but he's coping and usually any changes just set it all off again!
I think we'll see how things are overnight and regroup in the morning!
I've been keeping busy, while stuck in at home so I've had plenty of time to...harp! lol

I love it, it's just so very soothing to lose yourself in the music for a wee while, I guess, it takes me somewhere else and on a difficult day, that can be a real good thing!
Don't worry I don't really dress like this while harping - well not often anyways! lol  but this photo just goes to show that harping has been around for the longest time!


Whatever your passion is, be it music, crafts or cooking, give it a bash! I say, anything that helps you cope and stay healthy, hale and hearty and doesn't hurt anyone...is ok in my book!
Keep strong
(((hugs)))
Maz x

Busy, baton, travel and fun times...

Hi guys, where has the time gone! I just turned around and July was all gone!

Coo's seizures have been so problematic over the last month. We've been adjusting the meds, and just hanging on in there so it's been a bit difficult at times this month but....we've had some great moments too!
Where to start... ok!
The Baton...

The Queens Baton Relay finally made it to Ayrshire and a good time was had by all! How exciting the whole day was! All the expectation and excitement was worth it - I had a wonderful time! The town was so busy and everyone was cheering me on, I guess there was a real feel-good factor all around and it was just so brilliant to be part of it all!
Next...
A lovely celebration for all our baton bearers and their guests. We had four Carers from our group who were carrying the Baton so we decided to take another four of our Three Towns Carers as our guests. This meant eight Carers got a wee night out and dinner with Provost Joan and I'm glad we did it this way as Carers seldom get the chance for a fancy night out with free dinner thrown in too! Everyone enjoyed it so...Result! lol

Germany...
Our nephew Craig, lives in Germany and we made it all the way to his wedding - woo hoo!
Bearing in mind Coo's current erratic seizure activity and the stresses with changes in routine, it was no easy feat, it took a lot of planning and a great deal of organising but we made it! Previously we would have had to regretfully declined his invitation and stay home but the flexibility of our SDS (Self Directed Support) Care package, gave me belief that maybe, just maybe, with careful planning and support, we could do this - and we did! Oh I'm so glad we did, it was so wonderful!

So, just how did we manage it all?
Ok, Lobby was always coming with us - we would never have coped on such a trip without support so with her along it all seemed manageable!
A hotel was out of the question - Coo's seizure activity is so noisy and aggressive at the moment, it would just not have worked being in a small hotel room with other guests disturbed either side so we opted for an apartment with a lovely German family on the doorstep to lend a hand with language, directions and local information etc. - sorted!
The wedding was over two hours from the nearest airport and if we wanted to do some sight-seeing too, we'd need a driver - we asked our son in law Stevie to come along and drive for us - sorted!
We struck gold with our choices the apartment was very large and secure and just what we needed for a base for both the wedding and to allow a little touring too! woo hoo

Flights...
We found the most cost effective and easiest route for flights and just hoped for the best, everything would work out - best laid plans and all...we got delayed...for hours and hours but at least with all the support around we managed to take turns keeping Coo occupied and calm...mostly! There were some hairy moments but we coped! lol
The wedding was the main reason we went to Germany and it was a wonderful day and here we all are - check out the guys in their kilts! I'm so glad we got to go!

We even managed a boat-trip on the Rhine and a ride in a cable-car high up to a Castle too!
What a wonderful time we had!
I'm so grateful for the SDS package that made such a wonderful trip possible - we would not have managed alone, we just could not and would not have gone at all and that's such a shame! The flexibility and positivity that SDS has brought us is beyond price, it's given us a can-do attitude and opened up so many wonderful possibilities. Previously, so many doors were closed for Coo and I and SDS has changed that, in fact it's changed us too!

When SDS comes your way, please don't be afraid of the change - reach out with both hands and grab it!
(((hugs)))
Maz x

Mixed bag day...

Hi guys, things have been up and down again here!

We struggled again as Coo was really poorly overnight and it took quite a while to get going this morning but we rallied around and in the end...we were great!
Coo's wanted to go for a bike ride for months now. (If truth be told, I felt a little guilty out on my Carers cycle day last week as I knew Coo would have loved it and was so desperate to get out too!).

He's struggled so recently, that it's just not been possible but with things settling over the last few days, we made plans to get the bikes out this morning! woo hoo!

After the poor night,
I thought the bike ride would be off but...no!
By lunch time Coo felt better and wanted to go! Ok we had to compromise and didn't go very far but it was out! and it was fun! Weeee!
He's been sleepy and poorly since we came back but we're both glad we went, nothing beats feeling the sunshine on your face and the freshness of the wind blowing you along on your bike! It was just good fun and passed a pleasant wee hour!
I guess it's still one day at a time here and that's ok too, good days and happy times are so prized in fact, I think they're a bit of a blessing really.

If you get the chance to try out a wee bike ride - go for it! Something that much fun, shouldn't be good for you...but it is!
It's a win-win kind of a deal!


I'm glad we had such a good day today, tomorrow's D-Day for the Spirometry test. I'm staying positive and sending happy thoughts and a wee smile your way,
Stay strong as will I!
(((hugs)))
Maz x

On the up...

Hi guys, fingers crossed and not shouting too loudly but...I think things may be on the up again at last!

Coo's blood results came back and his AED (Anti-Epilepsy Drug) Phenytoin levels, were too low this time. His optimum level is at the high end around 19 - 21 so for him a level of 16 is too low!
With increasing seizure levels daily and no sign of any improvement, we decided to bite the bullet and up the doses by 25mg's in an attempt to get things back on an even keel - well as even as it ever is with Coo!
So with sunshiney thoughts...

We upped the meds on Friday and a few days later, things have been a little bit better! The seizure levels are beginning to come down from fifteen overnight to eight so...result!
Eight seizures a day might seem an awful lot and it is but if you put it in context - last week, at it's worst point it was seventeen and at it's worst, Coo had thirty seizures every day for six months! It's amazing what you can cope with when you have to - it's not easy but it never is for anyone living with a difficult medical condition is it!
Coo managed to stay awake most of the day too so it's all good! I'm just happy to report, for now, things are on the up and Coo's feeling a little better so...crisis averted again!

I hope things are a wee bit settled where you are too!
(((hugs)))
Maz x

Hard hats, Cycling hats & SDS too...

Hi guys, it's been hard hats' and cycling hats' all the way this week!

First for the hard hats...
I've sure needed to dig out my hard hat and flak jacket as Coo's no better. We're no longer in anti-bio-land there's no point really! Any infection he had is surely gone by now!
The x-ray results should be in soon and our GP's arranged a Spirometry test
I never knew there was such a thing but there is and Coo's booked for it next week. The seizures are still increasing and it's all such a struggle but we're battening down the hatches and coping one day at a time!

Now for the cycling hats...
Yesterday, my wee Carer group, 'The 3 Towns Carers' had their annual sponsored cycle/walk/tea-drinking and getting around the island day and it was...fun! Ten of us set off to raise some funds and have a bit of a laugh too, some were walking and some (like us!) were cycling, taking our time and just getting around the island!

The Isle of Cumbrae isn't huge. It's eleven miles around and fairly flat too so it's just a nice wee size for a bike ride - every so often!
We had a great day.
We started with a wee cuppa and some toast (or scones!) at the Moorings in Largs and after a wee catch up away we went! A short ferry ride and we were off and running - three of us cycled, the others walked and the weather behaved beautifully! woo hoo!
I must add, of the three who cycled, one was my wee mammy aged seventy-two and fit as a flea! lol She hadn't been on a bike for a while but was keen to go so I thought...what the heck, come on! She was quicker than the rest of us and thoroughly enjoyed herself! I think she was chuffed she made it around and rightly so - whit a wee wummin! lol

Yet again, I'm reminded how fortunate I am that we have good support in place - SDS (Self Directed Support), has made such a difference. Previously, if Coo was really poorly, I would have had to cancel my plans and just could not have gone but...not anymore! Looby came to keep Coo company, make sure he kept safe and well and I had a little time out and some fun knowing everything was ok!

I only hope more Carers manage to find something that works for them too!
(((hugs)))
Maz x

Carer Struggle & Blogging in the wee small hours...

Hi guys, we're still in anti-bio-land!

It seems like we've never left and blogging in the wee small hours is never a good sign!
It's been a difficult night so far and I'm taking a wee respite over a cuppa and just trying to regroup a little!

Where to start?
Ok, things are pretty dire here.
The chest infection Coo developed over a month ago, is still with us. He's had three courses of antibiotics in five weeks and he's no better! He's had a chest x-ray too - we're waiting on results- but we're really struggling. The seizures are thick and fast, the cough is awful, the phlegm is catching him and he has a bluey tinge to his skin while he's seizing. On the plus side, he's recovering between seizures so we're still ok but it's now getting just a little scary!

Coo doesn't cope well, with hospital admissions and from past experience, out of hours services can't really help - we have the rescue meds and wander/seizure alarms at home so if things can be contained at home, and they usually can, it's easier all around just to keep a lid on it and cope until morning!
I'm so worried, we're headed back into that dark place again with aspiration pneumonia but I'm so very upbeat with Coo, please God it doesn't come to that again!
We'll see our doctor again tomorrow!

The life of a Carer sure is a roller-coaster ride!
Last week was Carers Week and I had a lovely week!
I was out and about, had some fun and some fresh air too and even laughed a lot at a 'Laughter Yoga' session and I'm so glad I did as this week has been so very difficult!

Thank God for SDS (Self Directed Support), I have some Respite in place and can access those little opportunities and chances that are important for me -  lot's of Carers are not so lucky and that's to all our shame!
One thing's for sure, I'd have struggled a whole lot more without proper support and for that I'm eternally grateful.

Stay strong,
(((hugs)))
Maz x