Carers, COVID and keeping safe...

 Hi guys, we're still living quietly here, not isolating as such but being very tentative and really careful that's for sure!

There are very few places Coo and I now feel safe so we're mostly in Eglinton Park or at home these days. Don't get me wrong, over the years, we've been stuck at home for long periods of time before but this is different. Previously, we always had lot's of family popping in and out, running errands and staying for a chat or a cuppa most days.

This time, we were so worried over virus and infection as last time Coo had a bad infection things quickly escalated and he had a six month period with thirty seizures a day. It was an awful time neither of us want to repeat so we closed ranks and battened down the hatches to sit it out but this time, it was harder. I just didn't realise how much I need other people. 

I under estimated how hard it would be without the usual peer supports I've come to depend on. With family unable to visit and my Three Towns carer group, which has been up and running every two weeks for 15 years come rain or shine all gone, I've really struggled this time.

I've managed to keep in touch using Facebook or by phone but there's no real substitute for human contact and bonding over a wee cuppa and a chat is there!

I think we got hit with a bit of a double whammy, my Dad died one week and lockdown hit the next with it's enforced isolation and additional anxiety so we kinda became shut off from the outside world and just stayed home. Coo was poorly, he took my dad's death hard and his seizures spiked. He got anxious about infections and his seizures spiked, my rheumatoid flared and we got irritated at being shut in all the time and his seizures spiked...you getting the picture? Offt it was tough but we rode it out..kinda! I stopped all my meetings and took a time out. I didn't feel in the right head space to deal with other issues as we were kinda struggling dealing with our own. Gosh that sounds selfish and a bit of a pity party doesn't it! Our lives are still very cloistered and quiet but for our own sanity, we had to 'extend our household' and join with our daughters family, and our wee grand-babies or we'd otherwise have emotionally gone under. 

We eventually decided to start getting out tentatively. 

This week was wee Jessie's first Communion so we braved the church - I've been live streaming mass for months - everything was sanitised and distanced and different but we felt safe enough and we coped! 

It's my birthday today so we went out again, a favourite place up to The Dick Institute in Kilmarnock for a wee happy hour and again everything was sanitised and distanced so we both felt fine. It will take time to build back up confidence but we'll get there and as always we'll do it together!

In such difficult times, stay strong friends.

((hugs))

Maz x

Struggles, Stresses & Shingles...

Hi guys, yet another stressful month here!
Stresses...
Still no decision from DWP on his PIP claim/assessment so things with Coo have been a blast...again! The stress, health hassles and continuing seizure spiral sure took it's toll and Coo's AED's (Anti Epilepsy drugs) hit toxic levels last week.

We had blood tests done to check things in the afternoon and by nightfall, ADOC - the out of hours NHS services - were on the phone with the toxic news and a 'reduce the meds now' message! We were back on that dreaded AED drugs see-saw again!
Our already leaky boat, just got a great big bit more leaky - we coped or I thought we had. We know the drill, drop doses, contact the Neuro and let him know we're struggling, hole up at home -I call it hard hat and flak jacket time- and wait it out!

Coo's neurologist, Dr Tyagi's great! We've known him for ten years, he's patient and kind and really listens to him, he's an all around great guy! He sorts an emergency appointment and between us we sort out a plan of action and begin to move on!
Shingles...
Blood results are better this week so panic over you'd think? NO!
I got poorly with the shingles! What the heck!?! I'm seldom proper ill! I think it was probably stress related and a mixture of everything going on. Thankfully I'm on the mend now and Coo's doing better too so result...woo hoo!

That circle of support is so important for Carers especially when they are poorly!
We're lucky the SDS (Self Directed Support) care package, kicked in seamlessly and Looby - (our PA) came to stay for an extra few nights until I felt a bit better and we all lived to tell the tale! lol

I think that's really the difference it makes when Health & Social Care get it right! Carers have some much needed help and feel supported, they recover quicker and are able to cope with the situation and from an economic point of view, costly hospital admissions are avoided too as with proper support it's all managed that much easier at home!
**It would have been so much more difficult coping without it that's for sure!**

I'm hoping for a more restful time...a few weeks stress free would be nice for us all though wouldn't it!
Stay strong
((hugs))
Maz x

Carer Struggles, health and hassles...

Hi guys, it's been one heck of a week!
It's still a hard hat and flak jacket time here!
I've not posted much recently as my wrist problems from recent months have escalated!
The Carpal Tunnel Syndrome diagnosis still stands but one top of that, last week my GP diagnosed De Quervains Syndrome too so I had a cortisone injection to try and help relieve things a little.

This week my long awaited appointment with the surgeon finally arrived - (I was refered in June!) - so just how did it go? Well, ok in some respects but not so in others. While the Carpal Tunnel issue is present, he will wait for further nerve conduction tests done in Glasgow before he proceeds - fine but he's thrown another diagnosis into the mix - In his opinion, my wrist is too swollen to be Carpal tunnel and De Quervains alone and looks more like Rheumatoid Arthritis. He took some blood tests and has now referred me to a Rheumatologist so yet again...we wait!
Meanwhile the caring continues!
Coo's stressed and poorly, I'm now stressed and poorly and we're caught in bit of a vicious circle! I had hope for some sight of an end or even a way forward with this and I'd kinda pinned my hopes on my visit with the surgeon yesterday. I guess, sometimes, things really just don't go to plan!
This raises the question...
Just what does happen when the Carer is ill? 

I'm finding that very little priority - if any- is given to Carers, even though they are needed to provide ongoing care for another person and usually with little support!
It's just not good enough and we really need to work on this!
I will be ok , if things deteriorate I will use the contingency funding within our SDS (Self Directed Support) Care Package, to pay for more support but other Carers are not so fortunate and if I'm kinda struggling, just how do they manage?

Stay strong friends as will I!
((hugs))
Maz x

Hard hats, flak jackets ADOC & that Carer Roller coaster...

Hi guys another difficult few days!

Caring sure is a roller coaster ride at times that's for sure!
We were out walking in the fresh air one day and the next? Struggle and strife! Coo's taken a bit of a tumble again so it's been a real struggle here.
We're back in Antibio-land!

Firstly a major cough hit and his temperature shot up, then the dreaded seizure increase kicked in. Why does it always deteriorate at the weekend, when there's no chance of seeing your own Doctor?

Any how, we sat it out and tried coping at home for kicking 48 hours intending to see our own Doctor on Monday but things were getting scary and the vomiting seizures were back - I hate them, after a bout of aspiration pneumonia, they really scare me the most - it's the noise, the choking, infact it's just everything about them really!
We no longer had a choice, we couldn't wait till Monday, it was time to get help! ADOC (Ayrshire Doctors On Call) our local out of hours services were great. They saw Coo quickly, the Doctor handled things kindly, checked him out and sorted some antibiotics - the seizure increase in almost always caused by infection!
This let us trundle on till Monday and our own beloved GP - yet more pills and potions but at last some improvement! Yeah..crisis averted and no hospital admissions this time so...result!

Things are still a bit up and down and Coo's a bit banged about with all the seizures but we are coping and we're ok - hope you're doing ok too!
(((hugs)))
Maz x

Carers Roller coaster, Indyref, Carers Parliament...

Hi guys, what a roller-coaster few weeks!

I'm feeling wrung out and kinda like an old dish mop! lol

but where to start?
Ok, hard hat time...
Things have been difficult for Coo and I, his AED (Anti Epilepsy drugs), are too high in his blood stream so we've been tweaking the doses, battening down the hatches and just hoping things will settle a little! Multiple daily seizures are never easy but we're both hanging on in there!

#Indyref...
I've been wrapped up in Scotland's Independence referendum!
For me, it wasn't a huge desire to leave the UK.

More of a burning desire to do things differently, find a better way and in the process, hopefully improve peoples lives in general.
I've always voted - it's important to me and I previously always voted Labour too but in more recent years, I've felt a pull towards something different.
ATOS, austerity cuts and the continuing struggle for Carers and disabled people just to get by, have left me so sad and down-heartened at times, more of the same was unthinkable! I guess in the end, it was the announced further austerity cuts from Westminster that made my mind up.
I wanted something else, the chance to hope for a new start and hope for a better way too so I voted yes!

There's no other way to put it...We lost!

There were a lot of us (45% in fact), who wanted to try but, in the end, it was not to be. I can't believe how deeply I felt when the results came in, kinda flat and sad and I suppose so very unlike optimistic me!

I hope the promised powers do come to the Scottish Parliament or I and many others both 'Yes and No' voters will feel extremely cheated - I guess we will see!

In all this current political turmoil, the Carers Parliament on October 8th should be interesting!

One thing's for sure, I'm hoping for more settled times!
Keep strong friends,
(((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

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

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

Back in antibio-land,SDS & Carers Week...

Hi guys, we're struggling this week and we're back in anti-bio-land...again!

Coo's chest infection has returned. With a wheeze like an old horse and phlegm and the dreaded increase in seizures, I kinda guessed as much - so he's on the antibiotics for another run!

We'll be living quietly this week and hoping things quickly improve as it's 'Carers Week' next week!
It's a busy week!
Previously, at this time of year, a bout of really poor health with Coo, would have had a devastating impact. All my plans and respite time, days out I'd so looked forward to and doing things that are good for me, would have all been cancelled as I'd have to stay home.

Fast forward to today and it's a different story all together!
Our SDS (Self Directed Support) care package, gives me the control, flexibility and the freedom really, to just manage to get out, to do the things that are important to me and just to live really!
What a positive change!
I know not all Carers are as well supported! Too many still struggle on alone with little real help or respite, in what is a very difficult and challenging path and that's why Carers week is so important!

Please support Carers Week, if you see Carer items in the news on the telly or even on your high street, spare a kind thought for all those Carers just doing the best they can for a loved one!
(((hugs)))
Maz x

Antibio-land and Rain Dancing...

Hi guys, it never rains but it pours - literally too!
The lovely sunshiney weather has all gone and the rain clouds have really gathered around us!

We came back from our lovely, wee Respite break, all happy and rested and banged right into another health crisis for Coo.
He is so very poorly. He has aches and pains, a high temperature, an increase in seizures and the makings of a really bad cold! Now, if you or I have a cold, it's a bit of a pain but with Coo? It's a whole other ball game!

When to get help...
For us, that's not an easy one to answer!
Coo hates hospital admissions. We both do, they're always problematic, stressful and downright difficult and are always a last resort, if things can be contained and managed at home then...they will be!
I nursed things around the clock over the last five days but nothing worked and his temperature remained high around 39 degrees and as he refused the hospital again, it was back to our GP today. Coo has a chest infection, it's not pneumonia - this time, thank goodness for that but it's back on the antibiotics for yet another run!

We're back in Anti-bio-land again but I'm hopeful things will start to improve once they kick in and until then?
I need to remember...

Here's to some successful rain dancing!
(((hugs)))
Maz x

Carers, Sleep,Seizures and Support...

Hi guys, it's been a difficult week.
I'm afraid we are both struggling!
    Poorly...
Coo's broken foot still remains problematic and to cap it all, he has an increase in seizures yet again. There's been little in the way of rest here, it's all been a bit difficult. I phoned our doctor and arranged for some blood tests so we can at least check what the drug levels are like. Maybe this will shed some light on things or maybe he'll develop a cold - who knows, it's one of those, sit it out and wait and see kind of things!

I'm digging out my hard-hat and flak jacket again!

I'm really feeling it this week, I'm tired, feeling a bit low and I seem to have developed some swollen glands - joy - I hate being ill! I always say I don't have the time and just carry on regardless  and truth be told...I'm a bit of a rubbish patient too! lol 
I think most Carers are probably the same, we're used to being on the other side of the caring equation and a bout of illness ourselves? well, is just not part of the plan and definitely not cricket! lol
   Remedy...
I'll keep up with the 'take plenty hot fluids' advice, leave things a few days and just see if the pesky glands go down by themselves and if not? I'll cross that bridge when I come to it!
   SDS...
One thing's for sure, I'm so glad for our SDS (Self Directed Support) care package.
It means I can have some much needed rest - tonight is a sleep night for me and I can't wait! God alone knows how I coped when I was poorly before! Everything was so much more difficult to cope with and I sure don't want to be in that position again! When things are at their most difficult and not going well, having proper support in place makes all the difference in the world.

It's the difference between having a sense of struggle and drowning, to coping and surviving!


Sleep is such a small, normal, everyday thing but the lack of it, can be so very devastating and Carers feel and know this more than most! I'm so grateful I now have some proper rest, I only wish more Carers had the same - God willing!

Keep strong friends
(((hugs)))
Maz x

Welfare Reform Impact Research, Carers, disability & that roller-coaster ride...

Hi guys, it's been a bit up and down again this week!

Remember I agreed to be involved and share our story with the Welfare Reform Impact Research people? Well today was the day! There were two researchers today.

Thankfully they were both friendly and easy to talk to and although there were a lot of questions to get through, it was a good experience. I felt they listened so far so good!

It's never easy being involved with this type of project but it's so important! Only by sharing our stories and honestly telling our Government just how badly current Welfare Reform changes are hurting disabled people and their Carers can we hope to find and shape a better way!

We had a bad night, there's been an increase in seizures too and Coo's developed a cough and temperature so I really wasn't surprised when our GP phone about the blood tests from last week. Seems there are yet more problems for Coo and I. The AED (Anti Epilepsy Drug) levels are up, the white cells are up and the blood calcium levels are on the low side too.
Coo will need more tests and the calcium levels will need to be monitored for now as for the Phenytoin (AED) levels? Well, he is now right out of the safe range and not for the first time - but an infection or for that matter, anything much else going wrong, really causes the levels to fluctuate!

Now he has a temperature and sniffle, we've decided to batten down the hatches and sit it out for a bit! If things deteriorate we'll adjust the doses again but it's not unheard of for things to settle so...for now we wait!

This time last week we were having a lovely respite day at Glasgow's Christmas Celebration and today? Coo's been asleep and seizing all afternoon! Being a Carer sure is a roller-coaster ride! I'm off to dig out my hard hat again as I've a feeling I'm going to need it!
Let's hope for some more settled times for us all!
(((hugs)))
Maz x

Carers, Flu jabs and the Neuro too...

Hi guys, How have things been this week?
Well, Coo was doing ok!
His temperature stayed down and despite a wee sniffle he felt on the up so...

This week, we did in fact get our flu-jabs done! While this usually means a few days at home and an increase in seizures for Coo, it also means we can hopefully, avoid nastier complications further down the line! For him, Flu usually means a major crisis and a prolonged admission to hospital.
In our case flu jabs are not an option...they're a must!

It's been all go here, we had a visit to Coo's Neurologist this week too! He's a real nice guy and always listens so Coo feels comfortable raising any issues with him.
Anyways, we've been concerned over the last few months as Coo's had a lot of muscle and joint pain. He has pain due to all the limb jerking during seizures...fair enough and he uses a muscular pain relief but he's been in a lot of pain lately so he decided to speak to the Neuro, just see what his thoughts, (if any) were, on the subject. Turns out he had a lot of thoughts and all drug related!

Long term drug therapy, especially poly-therapy, is not much good for anyone really and Coo's been on AED's (Anti Epilepsy Drugs), for over thirty years. It seems, amongst the many side effects of his meds are Osteoporosis and bone density problems! This may well be contributing to his current pain levels so I guess we have, yet something else, that now needs checking - with a bit of luck it'll only need a blood test!

I often quote...

Carers...
'We are all in the same boat so we each must take turns to paddle!' 

I'm paddling hard for the moment but it's sure nice when someone else lends a hand at the oars!

Stay strong and keep paddling your boat!
(((hugs)))
Maz x

Struggles and yet more problems with meds...

Hi guys, it's been a stressful week again this time around.

Coo's struggling, he's stressed out again and this time it's because baby Jessica's hip surgery has been postponed. Her op will not now be until mid August - something to do with Anaesthetists!
We were a bit upset but it turns out, it may have been for the best as this week, Looby took shingles and yesterday Jessie has some spots too so it may well be that chicken pox are imminent! It never rains but it pours! Speaking of which...

The rainy weather is back too! lol
We're trying to make the best of things and just go splashing in those puddles! It sure beats drowning in 'em that's for sure!

The other big stressor, was caused by a change in meds and the issues surrounding the dispensing of it! - what a hassle that turned out to be!
Firstly, the chemist dispensed the drug in the wrong format and then it took phonecalls to both our doctor and pharmacy and some to-ing and fro-ing, to eventually get things rectified. Meanwhile Coo was already stressed and struggling with baby Jessie's op changes and this latest meds problem just added to the overall issues of the day...getting the picture?
It sure wasn't fun, that's for sure!

In the end, the meds got sorted, Coo stressed a bit less, the rain went off eventually and...we all lived to fight another day!
Happy days! lol

Let's hope for some calm!
I sure hope you're having a more settled week where you are!
(((hugs)))
Maz x

Bloods and yet more meds...

Hi guys, it's still a bit of a struggle here I'm afraid but we're hanging on in there!

Coo's still struggling, I thought it was probably a combination of the raised summer temperature and stress - he's still stressing about baby Jessica's up-and-coming surgery. I wasn't overly concerned, it has been a bumpy few days but we've had worse!

Anyhow, he's had a bump during a seizure and his speech was a little slurred so we decided to get his bloods done a week early, just incase! You never know and...you gotta stay one jump ahead!

Turns out, it's not the sunshine or stress, just like these wee frogs we're on a see-saw. Yes, we are indeed, back on that dreaded AED (Anti Epilepsy Drug) see-saw again!

For those who don't know, it's where there's too much drug in your blood stream and you have more seizures or alternatively...the levels are low and - you've guessed it - more seizures! The meds doses will have to be changed to accomodate and the bloods done again in another two weeks - joy!

While we were in with our GP, who's a great guy by the way - don't believe everything you read about NHS doctors!
I mentioned we'd needed to use the Diazepam a few times in the last month, it's only used if Coo's seizures are less than 20 minutes apart and he's struggling.
It's really not the most effective way to cope at such times and probably the local Accident & Emergency is where we should go but Coo is adamant, with seizure problems and the other complications added into the mix and little specialist knowledge at our local hospital, it's the last place he'd choose to be!

If it can be managed successfully at home, it will be and to be fair, it usually is and...we just ride it out and cope!
So, it's been decided to cut the Diazepam now and move onto Midazolam instead. It's a rescue med and supposed to kick-in quicker and work more effectively - well that's the plan and I guess we will see won't we!
In happier news...a wee time out!

Coo perked up this afternoon and as it was warm but not too sunny today, decide it was time for a wee bike ride - woo hoo result - time out! lol

We didn't make it far, just along the road to Looby's house, a wee rest and a cuppa and a wee cycle back home again! I'm glad we went as the time out, exercise and fresh air has done us both the world of good!

A wee while out, can make all the difference in the world, don't you think?
I hope you're able to get a wee time-out too this week!
(((hugs)))
Maz x

One battle ends another begins - ATOS...

Hi guys, ATOS are at the door!

No sooner have we sorted out our 'Bedroom Tax' struggle, now we have lurched right into another nightmare! The department of work and pensions have set the wheels of review in motion and ATOS are now at our door!

The forms to assess if Coo is fit to work, arrived a week ago, I can put it off no longer and have now started to complete them - what a time consuming, depressing and demoralising job!

Coo struggles so with this side of his disability, the need to assess and examine every tiny detail and worst still, record it for all to see! For obvious reasons, we don't take the lid off the box and closely examine things often, it's just too painful, especially for Coo!

He doesn't cope well with this aspect at all, he's already struggling with the stress and anxiety effects this process brings  and he has a massive increase in seizure activity. Last night his seizures were so violent and coming so fast, every twenty minutes and in an attempt to calm things, I had no alternative but to sedate him. At least then around 4 a.m. thankfully we managed a couple of hours sleep. We both have been so exhausted, it's been such a very difficult day for us.

I've always had to take on the bulk of the work with the forms, it's just easier this way so I'll fill them in as best I can, clarify things with Coo, add in additional supporting information and just hope for the best!
It really shouldn't be this way for people who clearly have severe disabilities - there must be a better system! Honestly, by the time this process is completed, Coo and I will have had to struggle really hard to cope with his care needs and disability at home and we'll have had to navigate through some very troubled times too.
I wish our government knew just what they were doing to us - for that matter even cared - and all in the name of 'Welfare Reform' and at such high human cost for disabled people and their Carers!

I'm posting a rainbow picture as I really need it's calming influence...

I kinda like the idea of holding one in my hand.
I think it's soothing and I hope you find it soothing and calming too!
(((Hugs)))
Maz x

After Campaigning...respite!

Hi guys, after hitting the campaign trail in recent weeks, I decided a wee time-out was much needed!

Coo's been struggling with all the stress generated by the current 'Bedroom Tax' issues we currently have. I suspected we would be affected badly but hoped we could manage things and with minimum stress for Coo, sadly I've quickly found this easier said than done!

I managed to cushion Coo from as much of the impact and stress as possible and pushed ahead with letters and phone calls to both our M.P. Katy Clark and our M.S.P. Margaret Burgess and while this has been helpful, we're still going to be stuck with additional housing costs and a difficulty in meeting this new expense.
Luckily our M.S.P. Margaret, asked the Local Authority to contact us about a Housing Discretionary Payment. This means we may be able to get some additional funding to help and I hope we do as downsizing is not going to be an option for us due to all the adaptions we would need!
For now, in our case, I've done all I can so...now we wait!

The financial worries to one side, health-wise, Coo's drug levels are still problematic, in fact they're all over the place. His seizure levels are on the up again too, stress tends to have a knock on effect like that and things spiral out of control so I decided, having done all I can for now, on the 'Bedroom Tax' front, it was as good a time as any to book some respite for us both.

Thank Goodness for our SDS (Self Directed Support) Care package, it means at times of real struggle, we can quickly access funds and take a time-out and...that's just what we did last week!
We didn't go far, just a little ways up the coast and it was...

...Magical! - Just look at that view!

It's a real pretty place, we used to visit often when our children were small. We always enjoyed it and I'm glad we returned again!
This time, we had a few days on our own, wandering around, relaxing and generally just keeping things calm and restful. In the middle of the week, Looby & Steven brought baby Jessie for a few days so we had some quality, family time too and as Looby was along...I got some much needed sleep so...result! lol

 

We've come back home all rested and relaxed so everything else is just going to have to wait for a few days!

 

We're doing ok and I hope you're doing ok where you are too!

(((hugs)))

Maz x

Back with a bump...

Hi guys, I'm afraid, it's been a bit of a bumpy ride this week.

In fact, caring sure is a bit of a roller-coaster ride at times isn't it! Well, after the ups of last week and my big night out, we've hit the down-side again - Coo's blood levels are all over the place!

 

Our doctor called with the blood results and...that's never a good sign! Yet again the levels are too high. They're way out of the safe range so I guess that's why we have yet another seizure increase and Coo keeps continually falling asleep!

*The medical advice?

Well, we could reduce the meds and hope things settle a little but as Coo's now developed a sniffle that's not really a good idea, any infection will create even more drug level problems!

We've talked it out and decided to leave the meds as they are and sit it out for another few days, hopefully either the cold will come to a head and we'll cope with that or the drug levels will even out and Coo will start to improve all on his own - stranger things have happened!
 

It's such a careful balancing act with the meds now! I doubt, poly-drug therapy is ever easy! I do know, it's so very difficult for us though, especially, when we need to adjust the doses. Each little change risks a huge spiral out of control again but...

Positive thoughts - Let's hope it doesn't come to that this time!

 

Stay strong!

I hope you're having a more settled time where you are!

(((hugs)))
Maz x

That AED See-saw again...

Hi guys, we're back on that dreaded AED (Anti Epilepsy Drug), see-saw yet again! You know the one, too high a drug level mean yet more seizures and too little...you've guessed it - ditto!

Coo's blood results are back today and they're not good.
He has raised white cells and raised drug levels in his blood again but...just what to do this time?

The white cells mean, he clearly has an infection somewhere so we can opt for yet more anti-biotics or we can reduce the meds a little and hope things settle down. Trouble is he's already had them in the last few weeks so we're not keen on another anti-bio run just yet!

So what's the risks?
Well, if we stay put on the current dose, there's a risk the drug levels will increase and Coo could end up toxic - not good! 

and if we reduce the meds?
Well, as the infection clears his body, the levels will drop naturally and he could end up with really low levels and in a worse position than he was before!
So...
Coo's not keen on yet more pills so we've decided to, keep close to home and an even closer eye on things for now. We'll wait it out for another few days, get more bloods done and hope things have settled down a bit.

It's not so much a see-saw this time it feels like a bit of a roller-coaster ride instead but with a little luck, I'm sure we'll be back on the up soon!
(((hugs)))
Maz x

Crash and burn, yet more bloods...

Hi guys, Coo got more blood tests done today.

Not ideal this time. It was an early appointment so his routine's all over the place and it's been a case of crash and burn today. He's been sleeping and seizing on and off  since tea-time and picked up a couple of injuries along the way so I guess it could be one of those nights - hey ho!

To cap it all, we had yet more problems today with medicines! Coo's been having some more stomach  problems so our doctor took the time to check meds and find something for him that would not cause any problems with his other meds - a real worry for us now as there's just so many!

Anyway, he found one and off we went to the Pharmacy, now you'd think everthing was plain sailing then wouldn't you? We sure did...but no! They made a mistake and dispensed the wrong drug! Luckily we double check everything and spotted their mistake, a quick phonecall to our doctor to check things and...back to the chemist...again!

I've heard from other Carers who have had problems with NHS prescriptions at Pharmacies too and that's a worry!
If we Carers can get it right and check for and identify errors, why can't the professionals keep up their side of the bargain too? This could have been nasty, thank God I spotted their error before any damage was done.

I hope things are going ok where you are.
(((hugs)))
Maz x