Hi, Carers struggles again...

 Hi guys, it's been such a long time since I blogged but yet again we're back in the mids of another health crisis and I find myself drawn to blog it all out!

Struggles

Coo is poorly, he picked up another chest infection a few months ago and it's never really left! This has meant a crazy increase in his daily seizures - he has poorly controlled sleep seizures at the best of times and this latest infection has created a challenging spike! We were managing but the gradual decline just wouldn't let up. We've saw his Epilepsy nurse and tried upping the AED's (anti epilepsy drugs) for the seizure spike and antibiotics with varying success, any infection is problematic. Nothing is working. 

Things are difficult if Coo needs admitted to hospital as he needs a side room and me to stay with him as his unpredictable seizure activity can't be contained in a ward. We've been there and it's awful for all concerned so we avoid admissions like the plague! 

A few nights ago, things deteriorated so much, he was really struggling as was I so we had to get advice from NHS111 and ambulance services came out. They were great. They gave him a Nebuliser treatment as his oxygen levels were 89% and were very kind and patient. We explained why unless it was absolutely necessary we'd prefer to stay at home where he has seizure and wander alarms and we can cope better in the familiar surroundings and thankfully they listened. Coo's now added steroids, yet more antibiotics and now a Nebuliser to the mix. We're still battening down the hatches and battling through but I'm hopeful thing's have now peaked and tentatively optimistic we could be coming out the other side.

Who carers for the Carer?

Thankfully Coo has an SDS (Self Directed Support) care package in place so I no longer feel so alone when things get really scary for us both. I know help is there and I don't feel as if I'm drowning anymore but at times like these, in the quiet wee small hours, when sleep evades me I do worry for those carers still struggling on alone as I was for so many years. Just who carers for them?

Stay strong my friends as will I

((hugs)) Maz

Back in Anti-bio land...

Hi guys, first day out this week and it's to the...doctors surgery! woo hoo While not my favourite venue, it is out non the less and beggers can't be choosers! lol

Coo has an infection so we're back on the Anti-biotics yet again!
We saw a different doctor this time and he seemed very nice, thankfully Coo felt comfortable with him so things went ok.

I'm digging out my hard hat and flak jacket again to cope with the usual seizure increase that always comes along with an infection never mind adding the antibiotics and anti-inflammatories into the mix too.
I think it could be a difficult few days, thank goodness for the seizure alarms, it's times like these they are most useful!

Meanwhile, I'm still battling with the awful cold Coo shared with me too! lol Thank God, I think I'm over the worst of it now and just in time for this latest onslaught!

Wish us luck - I hope you're doing ok where you are and I hope too, you're avoiding the coughs and sneezes!
(((hugs)))
Maz x

Still struggling...

Hi Guys, the struggle continues I'm afraid.

I suppose that kinda sums it up for most Carers doesn't it.

Coo is still very poorly. Last night his seizures were every 15 - 20 minutes again and he's pretty beaten up - well, we both are really! His blood tests show his drug level is still up 'n' down on what we call the AED (anti epilepsy drug) see-saw so there's little sign of any improvement.

Luckily we have Looby to call on when I need a bit of a break and she's been brilliant moving things around to accomodate the current issues.
What a wee star!

New drugs are always a worry and I'm dreading futher problems with side effects as things are already pretty rocky for Coo as it is! I'm trying to be real calm, usually not a problem as nothing really fazes me...well not much anyway! LOL

So...I'm going to move onto more positive things!

Our weather here is as unpredictable as ever!
The sun has made another appearance after 12 days of rain! LOL

In fact it really has been brolly and wellies weather most of our summer this year! LOL Even our local church fete was washed out on Sunday - now how dare it rain on that - there's no justice is there! LOL

So as the sun co-operated and came back for a vist and Coo's seizure alarms were on, I did manage to sneak in the garden for a wee while! The veggies are still doing well - I guess the rain is good for something anyway, what is it they say? about clouds and silver linings! lol

Tonight, dinner will be baked potatoes and an assortment of fillings with some fresh side salad, drizzled with my favourite honey mustard dressing and best of all most of it came free of charge from the garden - cool or what!

I never thought I'd enjoy growing things so much...but I do!
It really is good for you and so is the fresh produce too! LOL

Let's hope for some sunnier times to come.
Take care,
maz x

Back in Anti-bio-land...

Hi Guys, it's been a tough week and we are indeed back in antibiotic land!

Coo is poorly yet again.
He had a bad seizure and aspirated some fluid.
The problem is, during a seizure, some saliva went up his nose, into his sinus and into his lung too so the result is he's struggling with another chest infection. He has a high temperature, flu-like symptoms and worse still, even more seizures to cope with - not fun!

I'm trying to keep positive about things, the seizure alarms are a Godsend as in between times I've still manged to potter about in the garden, knowing they will go off to alert me if he seizes.
God knows how I managed before we got them...well I do know how I managed - it was pretty darned hard!

Anyways, he seems to be picking up a bit now so I'm hopeful he's over the worst!

In other news...

I've been busy this week out working in my other guise (Reiki & Massage guru! LOL).

I began practicing Reiki & Massage around 5 years ago.

Coo was going through a rough time and Reiki and massage treatments were an option to help him cope as money was a bit tight (as usual!) so being practically minded me...
I trained to do it myself!

It gives me an outlet and gives Coo...some free treatments! I'm nothing if not resourceful! LOL

Anyway, on Friday's Looby has been drafted in to help out with Coo and I've had a change of scene for a few hours with some Reiki and massage. Honestly, I think I get as much relaxation out of the sessions as the community clients do!

All that aromatherapy, scented candles, gentle panpipes playing and half an hour in a softly lit room is good for the soul - it's probably the most peaceful of things that I ever do!

Can you tell? I love it! LOL

So, between coping with Coo, the Reiki & massage sessions and pottering in the garden, I've been busy, busy, busy! Maybe it's my way of coping, I think it probably is you know! I think I need the diversions to keep me sane and if they're pleseant diversions so much the better!

Happy Reiki thoughts, health and healing sent your way!

Take care of you too!
maz x

Hard hat time again...

Hi Guys, it's hard hat's and flap jacket time again.

Coo has been poorly over the last few nights and I was starting to worry, what was the cause this time.
He's been tucked up in bed most of the day and it turns out the high temperature has turned into a cold yet again and the sniffles have arrived!

At least now we know the reason for the seizure increase, it's less of a worry and he's due to see the Doctor tomorrow.

While Coo's been tucked up in bed, I've been taking things a wee bit easier myself. The seizure alarms we use now, let me wander around freely at home and in the garden - though not an option today as it's practically Baltic here!
I know they'll alert me when Coo needs a hand and that gives me a bit more freedom.

I've pottered about the kitchen and got the soup pot out as I know when I don't feel well a comfy bowl of soup is usually all I want!
Poor Coo, he's getting soup if he likes it or not! LOL


Hubble, Bubble, Toil & Trouble...
well, it is that time of year isn't it! LOL

Here's to comfy, cosy and warming soup...Mmmm!
Take care and keep cosy where you are too!

maz x

Carers Conference Glasgow...

Hi guys, I was up in the big city yesterday!
It was the annual Carers Scotland conference so up I went with 3 other Carers.

To be fair it was a real cold, frosty day but my gosh it was so cold inside the building the speakers put their gloves back on!
Now come on, I know there's a credit crunch but holy Moses, it was like sitting in the...



I felt, my fingers had frozen like captain Birdseye's and my nose was turning out as red as Rudolfs! LOL

Thank God at the break time there was some warming soup!

Back to business!

Suitably warmed from the soup, it was easier to listen to what was on offer as there was a speaker from TUNSTALL.
This company offer some help to support people living in their own homes for as long as they can.
Well, you might ask, what's so different about that?
Well, the solutions are all using Technology! you know, alarms and sensors and fancy pill boxes that let you know when it's time for meds.

I was quite impressed with some of their gizmos and gadgets so I'm going to have a looky-see for myself on there website.
Once we'd tried out some equipment and heard what Carers Scotland had been up to for the last year, it was time for some...pampering!

I had the choice of either going for a massage or trying some art therapy. You know me, I'll try anything once - well almost anything!LOL so I decided on the art therapy and it was BRILLIANT!

Glass Painting rules!!! LOL

It's so much fun and it's relaxing and best of all...you get something to take home at the end of it!
How cool is that?

I bet you're wondering what I painted....picture window, fancy urn....large vase?
Nope! itty bitty tea light holders! LOL
They are by no means masterpieces but they are kinda cute and I made them!LOL
Well it was an enjoyable pass time I'd kinda like doing again so who knows, they say practice makes perfect!

On the way home, there was a German Market set up in the town!

It was just getting dark at this point and everything looked so pretty all lit up.
Bearing in mind how cold it was, I couldn't resist buying a new pink hat, the one I chose has a long section you wrap around as a scarf! Ha Ha I think it's a new version of buy one get one free! LOL

Anyways, Coo was fine while I was out, he and Looby spend a wee while in the park and went for a coffee!
I'm glad I went as I needed a bit of a break,the last few nights have been a bit hard going as Coo has a cold and we all know what that means - hard hat and flap jacket time!

Next up is our panto visit on Saturday, I hope I can keep Coo awake!
I think he'll be fine as in 'Pantoland' there's usually a lot of shouting and singing so even he would find it hard to sleep, well you'd think so, anyway here's hoping!
Fingers crossed!

Love
maz x

More equipment...

Hi, we're still battling on through the latest chest infection!

I think we're over the worst of things now as the seizures are settling a bit (10-ish a day).
I had to speak to the O.T. at Social Services again as we're needing another alarm as Coo's taken to wandering and bouncing around the place during seizures so his bed alarm isn't enough to cope with things.

There's always something isn't there?

Luckily I have the Net to find out what's on the market!

I went to easylinkuk - where our bed seizure alarm came from and found one that would help.
It has an infra-red beam that will activate and let me know if he gets outta bed.
Hopefully there'll be no more skydiving down stairs at 3 in the morning!

I like this company as their equipment is reasonably priced, they know what they're talking about and don't try to make you buy more than you need!!

Our O.T. is working on this a.s.a.p. so hopefully things can be contained till it's sorted out.

maz x