Stay isolated? Covid the disability Carer dilemma...

Hi guys, things seem to be moving forward in dealing with Covid 19. Cafe's, pubs and some hospitality areas are open now and folk can carefully go out again or so it seems but it's very scary for those who've been shielded away for so long! 

Going out? is it safe? Questions, questions?

With every news report and update, more hot spots and pockets of infection are reported and it feels like one step forwards and another step back so...we're still isolating...mostly! We've been out in the car a few times had a wee cuppa  - it's like the old days of childhood, take a picnic and a cuppa and enjoy the peace and quiet but now it feels so different. It's not by choice, it's to ensure as minimal contact as possible with the outside world! I'm not sure I like this new way of living but Coo is still terrified of infection after the hell of aspiration pneumonia that left him with a COPD and asthma legacy and that's hard to get past especially as other places begin to lockdown again!

Changes...

Life has changed, especially for Carers and disabled people. Let's face it everyone is worried, factor in additional health conditions, life limiting issues and daily updates and stats on a deadly virus - it was never going to be easy for us was it but what to do? Continue to role with the punches, pick up the pieces and carry on - it's what carers have always done isn't it?

I'm coping mostly! Life is a challenge and we just muddle along through and find a way. Granted this time, the Covid virus has had a prolonged impact and still continues to cast it's shadow so it's been particularly difficult to sustain some positivity but we're still here and we're still going. Just like millions of other carers across our country, thankfully we're a hardy bunch!

School's returning...

Lot's of folks will be celebrating some form of normality returning as schools open up but my heart is filled with dread. After the prolonged period of enforced seclusion, we just got used to hugging our grand-babies again and I'm now dreading another prolonged isolation from them, whilst we wait and see if infection spikes or is it safe enough to continue contact? 

Spending some time with our wee grand babies over the last month has kept me sane and still connected to life and the outside world. I'm going to struggle to relinquish this again. I really hope I won't be back relegated to my seat on the drive, looking through the window. I know how awful that is, living life stuck inside with just glimpses of the busy world going on outside but it passed and this will too!

I really feel for carers who are struggling on alone at the moment. I remember just how difficult that was and hope and pray, things will start to improve for us all soon.

((hugs))

Maz x

Carers to Top it all - health issues and hassles...

Hi guys what a week it turned out to be for us!

Health issues galore here!
Me first...
It seems on top of the neck problems, neuropathic pain, wear and tear and degenerative disc of recent months, I've now developed Carpal Tunnel Syndrome.

I've had wrist pain on and off for ages and I did speak to our GP about it around two years ago too. He advised me to use a wrist support, rest it and if it didn't go away, come back and see him - it went away and so did I! lol Next time it hung around for a few days again too but this time, despite resting it and using an ugly splint support, it's been over a week and no joy so...I think I'll go see our GP now and deal with it!
Coo's up next...
Ok it's not as if Coo needs another illness, well to be fair, who does!
In recent years, Coo's always been prone to coughs and chest infections after a nasty bout with Aspiration Pneumonia during an increased and prolonged seizure activity period. Anyways, he's had a persistent cough for months now so after yet more tests his latest xrays show he has COPD - (chronic obstructive pulmonary disease).
I know he's been more 'gurgley and phlegmy' during seizures but I thought it was maybe yet another chest infection brewing - seems this is all par for the course with COPD and in our case seizures thrown in the mix!
We're just kinda regrouping a little and getting our heads around things. It'll be ok!
In happier news...
Wee Jessie's latest surgery for Hip Dyspalsia went well - she's up and around and doing grand!
and her wee sister's hip scan went well - surgeon will keep an eye but...no more harness or Spicas for Islay! woo hoo! Thank goodness for that!
and to finish on a sunny note...

The sun came out this week, both Coo and I felt good on Wednesday too so we got out for a wee cycle! Yeah!
A good day and both hale and hearty? What a blessing!



We're doing ok and I hope you are too!
(((hugs)))
Maz x

Hard hat time again...

Hi guys, things are a bit difficult here, Coo's taken a bit of a tumble again.

He has felt unwell the last few days, usually that means there are sniffles on the way so we've just been keeping an eye on things. Anyways, no sniffles arrived but we've a massive increase in seizure activity. Poor Coo was seizing every half hour last night and we sure are feeling it today!


The worse thing is, the dreaded vomitting seizures have made an unwelcome return. They are by far the most scary and real difficult to deal with. I guess that's because, in the back of my mind, there's always the worry of aspiration pneumonia again. Coo's had struggles with this before, when during a vomitting seizure, fluids were inhaled into his lungs creating massive infection and a medical emergency too and what a nightmare that was!

I'm digging out my hard hat and flak jacket yet again. Just keeping things on an even keel as best I can for now.We'll get more bloods done tomorrow and check exactly what those pesky white cells are doing and for today, we'll just take things slowly.


I know when things are spiralling out of control, the signs are clear enough so hopefully we'll be able to hold things together until we see our doctor tomorrow and if not? Well, there's always A & E but that's always a last resort - if it can be handled at home, it will be!

Thank Goodness for our care package!
The SDS (self directed support) let's me have some sleep nights so at least I know, whatever happens...tomorrow night I will sleep! This wasn't always the case and really shows just how valuable good 'support' really is!
I honestly don't know how I'd cope without those sleep nights - I sure don't want to try that's for sure!

Anyways, we're doing ok for now but let's hope for some more settled times! I hope you're doing ok where you are too!
(((hugs)))
Maz x

More bloods...

Hi guys, we're living quietly this week.

Coo's blood test results came back yesterday, courtesy of a phonecall from our doctor! This time the white cells are very low and that's a worry on two counts...
 Firstly - There's probably still some infection kicking around Coo's system.
           and...
Secondly - Coo's immune system isn't working properly while the white cells are low so he's prone to more infection - lovely!

Yet more medication...again. We'll keep a close eye on things and repeat the bloods next week, anything to avoid a return of the nasty pneumonia bug!
Thankfully his seizure level hasn't majorly increased this time so we're managing things ok. It's just a case of being a bit more careful, wrapping up in hats, scarves and gloves when we do venture out and avoiding busy places where lots of people are likely to be sniffing and sneezing!

I know it's definately wellie and brolly weather here - it's been very rainy so far this week but hopefully we'll be able to wrap up warm and get out for a wee walk in the park at some point.


I guess for now, it'll be...yet again...hot chocolate drinking and keeping cozy - I'm sure we can manage that! lol
I hope things settle for us soon and I hope too, you're managing to avoid the sniffles where you are!
(((hugs)))
Maz x

Back in Anti-bio-land...

Hi guys, we're back in anti-bio-land yet again.

Coo has a chest infection and a temperature so we're battening down the hatches, keeping cosy and hoping things settle down soon! I'm not really surprised as November is usually a difficult month for us. After the pneumonia of previous years, Coo's prone to chest infections now and living on the coast, November is usually pretty much, windy, wet and chilly!

Yet again, I'm digging out my hard hat and flak jacket!
The anti-biotics should kick in soon so hopefully we'll be doing a whole lot better in a few more days.


Meantime, I'm keeping cosy and warm with some soothing hot chocolate
but which one to pick...
Right now I have three on the go! lol
Tangy chocolate orange,
Zingly mint and my current favourite...
Turkish Delight - Mmmmmm!

I do hope you're keeping cozy and comfy where you are too!
If you need a wee pick-me-up, try some hot chocolate - it sure works for me!
(((hugs)))
Maz x

Coughs 'n' sneezes 2...

Hi guys, those coughs 'n' sneezes are still kicking around here!

We're still in need of the wee cosy blanket!
Coo's getting mightily annoyed about things now. He's had this cough from mid September so we've been doubling up on the inhalers, steadily using pain relief, sipping the hot drinks, keeping warm and keeping an eye on Coo's temperature too but things are not improving much!

We know he has infection.
Last weeks blood results showed raised white cells and his AED (anti-epilepsy drug) levels were down so it's been fun this last few weeks and it's not letting up.

I guess you could say...
I'm digging out my hard hat and flak jacket as yet again we're on the dreaded AED - see-saw! You know the one...too much drug in the blood mean more seizures and just to complicate things...too little drug and, you've guessed it - even more seizures!

To increase the meds or not - well that's the million dollar question isn't it!

On one hand, there is an increase in seizure activity this week and Coo's very sleepy but then again the infection is still kicking around Coo's system just now and that could be lowering the drug levels. The problem is, if we increase the meds, as the infection clears, the drug level rises and things become toxic..not good!

I think, on balance, we'll stick it out for another week, until the next blood test are done and just hope things settle a little!

Wish us luck!
Let's hope for some winter sunshine, wouldn't that be nice!
(((hugs)))
Maz x

Coughs 'n' sneezes...

Hi guys, coughs and sneezes spread diseases says the old rhymn...

They certainly do!
Coo has a cold, well, at least, I think that's what is wrong!
He's very wheezy and chesty and he has a temperature and there's an increase in sleepiness and seizure activity today. Odds on it's a cold coming! We've doubled up on his inhalers, popped some pills to help with the temperature and have been keeping inside in the warmth for the last few days in the hope things will settle down.

Poor Coo, it's not much fun today for either of us I'm afraid!

Seizures while his lung capacity is compromised are always a worry but when you're poorly, you really need to sleep and with Coo that means yet more seizures! He's been pretty much sleepy and seizing, on and off all day and he's phlegmy too.
The vomiting seizures are back with us tonight - and that's a worry! I honestly find them the scariest of all, especially after the Aspiration Pneumonia of a few years ago, he struggled with that nightmare for months - we both did and it was terrible!

We'll get some bloods done, hopefully tomorrow and check the white cells for infection and...
Just stay positive that things will improve soon!

Just the other day, I remarked to another Carer, that chest infection time was fast approaching but I didn't realise it was actually here with us already!
It really must be Flu jab time soon too!

Never mind, so far I've avoided catching Coo's cold so chin up and onwards and upwards! lol
I hope you're cosy where you are and you're avoiding the cold bugs too!
(((hugs)))
Maz x

Hospital 'n' rainy days...

Hi guys!
I guess the rainy days are back again - it's been blowing a hoolie here and lashing with rain!

My wee plants are still safely tucked up in the greenhouse and it's well into June now.
What a month - we've had all the seasons! lol


Coo's been at hospital again to see the Neuro and things have kinda gone as we thought. They're not going to do anything more for the time being.

It seems the AED's (anti Epilepsy drugs), he's on just now are as effective as they're going to be and any more increases will not really help - already been tried!
I guess he's stuck on around 10 - 15 seizures a day and that may sound a lot but it's been worse...a lot worse! Three years ago, after a nasty run-in with pneumonia, it was upto thirty seizures every day for months on end so on balance... we're kinda ok with things - well, we can manage put it that way! lol

I think so long as we take time out when we need to and stay home when we can, things will be ok!
I'm glad we've got the wee greenie and my array of fruits and veggies on the go too as it keeps me busy and even Coo's began to take a bit of an interest - woo hoo!

Who knows, maybe even the sun will come back for a visit!
Let's hope so and if not...?
...let's keep those sunshiney thoughts for warmth! LOL

Meanwhile try this wee kitten smile for size...

Works for me! LOL
(((Hugs)))
Maz x

Drug see-saw again...

Hi everyone, after all the issues and difficulties adding this drug into Coo's system, it looks like it's gonna have to come right back out again!

Coo's blood results, show a further hike and there's now no way to control the level of the different drugs in his blood-stream.

Too little he seizes into oblivion all day, everyday, and too much well...ditto.
That's the dreaded drug see-saw effect!

He did avoid some of the nasty side effects but a month into the trial, he's suffering severe Flu symptoms, chills, cough, the works and continual nausea, his appetite is nil so he won't eat anything much and to cap it all he has now developed depression!

We're waiting for a specialist nurse to contact us tomorrow but Coo feels his quality of life has diminished so much, that any gains are far out-weighed by unbearable side effects.
Coo says the feelings of desperation, sadness and lethargy are as awful as when he had pneumonia and was struggling with 30 seizures a day!

It's been a very stressful experience but we had to try as it's a new drug and gave us just a little bit of hope!

Gosh it's never easy is it?

Don't you sometimes feel, everything comes at a price or is that just a tad cynical?

Let's hope for better times.

Take care friends,

maz x