Brain on Fire - World Encephalitis Day

It's world Encephalitis Day and I have just watched the movie 'Brain on Fire' .
It's on Netflix and it certainly pulls on the heartstrings.
Although we all have our own distinct story, there are many commonalities.
A year ago, if I knew what awaited me, I'd have recommended and maybe advised this should be watched by medics and all healthcare professionals to consider AiEncephalitis a posible diagnosis and arrive at more focused investigations and treatment pathways.
Who knows, I may have been better, quicker?

Watch it though...

The Window Cleaners

The Scenario... Mid-morning, Julie has gone to work and I've had breakfast, in bed (Thanks Julie xxx) so I'm gonna have a shower, shave, get dressed and walk the dog.
I've had my meds so they will be kicking in and therefore I'll be able to walk a little at a steady pace.
I'm preparing to shave and shower, therefore--starkers when the dreaded "ding-dong" of the doorbell is sounding in the background.
Who could it be?
Is it the postman with a parcel too big to get through our letterbox?
Is it a friend, relative, jehovas witness?
The only way to find out is to open the door... Wrong, none of the above !
I could have looked out the window in the study, or from the kitchen downstairs however, my encephalitis head opts to put my pyjamas back on, dressing gown and then walk down the stairs, opening the door to two window cleaners.

They look at me, as if to say- 'lazy bastard is still in bed' and I look at them with my head saying a loud WHAT NOW... instead all I said was' alright? '

'We are here to clean the windows' 'Okay...'
Judging by their blazers with their window cleaning company logo on it, I guess they are telling me the truth. I remember now, we've only had these two a month so don't want to piss them off yet!

The older guy says, 'I can't remember if it's £20.00 or what..' what a chance.
I am now in a state of high alert, even in my dressing gown.
I reply 'Now, I know I have had a brain injury but I do remember it is not £20.00'
Tbe other one intervenes and says 'Nah mate, you are right it's less...I think it's £15.00'.
I don't believe anyone now.
I then remembered, I have no money in my wallet, how am I going to pay them?
So now Encephalitis brain kicks in..
I said 'I'll phone Julie and find out and I will go to the whole in the wall and take some money out.
Got dressed quickly with my pj's under a "temporary set of clothes"...' What is a temporary set of clothes? ' I hear you ask.
Well they certainly aren't ones that will change into something wondrous or supernatural, they won't disappear or lose their integrity in the 15 minutes it would take me to get to the fscility.
They are.. The clothes I wore yesterday, the outer clothes only. No undies... They cannot be worn two days in a row (if anyone disagrees with this statement, my advice: keep it to yourself and don't share it, the habit, not the undies, but them too..!).

RosieG, in her coat, was ready for walkies too so I took her along.

I called Julie, at work just confirm the price agreed and it's £15.00..
Julie asked 'Are you alright?' to which I started to reassure her I was okay when Rosie decided to tske a dump on the field adjacent to the path!
Have you ever seen a greyhound having its bowels opened?
It is extremely obvious and graphic!!!
I let her finish her business as I'd tucked my phone in my coat and grabbed a poo-bag to pick the doo-doos up...
Picking up shit is not easy whilst you hold the dogs lead and walking stick, bend from the legs, because of the fractures in my thoraco-lumber spine and approach the steaming, smelly mound with a thin plastic bag that thankfully you kicked your fingers, in order to open the damned bag in the first place, now in a 'crane like' stance, about to collect the offending stool... Nice, wsrm, formed and a good colour (Type 3 on the Bristol stool chart, once a nurse, always a nurse...)
Poo and intact bag deposited in the poo bin near us, I hobbled home, in pain but achieving my goal.

Anyway, I did it, I got back before they had finished..
'Thanks mate' was the reply from the old one who grabbed the & 15.00 off me (not £20.00 haha!)

When Julie got home, we discussed this, she said "you look shattered'
'I am'
She then said, 'next time, just tell them to come back latet and collect the money...'

Easy when you have a good head!!!
I will get there...

First Post of 2019

Well I have to start off by saying 'happy new year' and wishing you all the best for 2019.
I hope this year is kind to us all. Last year was, how can I put it, shit!

Yes indeed, apart from the birth of our 4th grandchild, I had little else to celebrate last year.

2018 saw me admitted into hospital in a coma, caused by encephalitis and I was happy to come out from ITU alive.
All I remember was going to bed on the 1st March and waking up a couple of weeks later. I also had pneumonia, hypertension and other sinusitis / asthma...

I had no memory of what happened... I cannot remember fitting, stopping breathing (arresting) or how I sustained the fractures on my spine...
Now, I have been retired from work,  early retirement.
Up to now, retirement is not much different to being off sick!!
I am in loads of pain, my mobility is restricted and I don't get to see too many people outside of the family.
I pass the time cleaning, cooking, painting and undertaking my physiotherapy to strengthen me up.
It's difficult because I lost so much muscle strength and although I have recovered lots of it, I still need to strengthen up!
Added to this, I have put on some weight too.
I now take pain killers, inhalers,

So what will my blog do that is different?
I will still be unashamedly promoting my books and art but... I want to keep track of my progress but also give you a synopsis of what has happened to date. The serious points and the funny ones, if there are any.
After all, humour can cure lots... 😜

I also want to educate and support anyone with sharing experiences.
This will include retirement, hobbies, encephalitis, relationships with one's self and others and life in general...

I also feel that it will be very powerful to write about being a patient after decades of being on the other side... Believe me, it is very different and very hard!

If you are interested, sign up for instalments, interactions and updates...
I hope to keep you posted

Ram

Life after encephalitis... The book

As part of my coming to terns with my broken brain, my wife purchased this book.
I have read it in stages and recommended this to all healthcare professionals that may deal with this and patients / carers.

Life After Encephalitis: A Narrative Approach (After Brain Injury: Survivor Stories) by Ava Easton.

Click on the authors name to take you to the link.

Encephalitis and me...

Apologies for not posting much over the last 6 months.
The reason being, a stay in intensive care, unconsciousness, in an induced comma, waking up confused, dazed and scared, festooned with tubes everywhere and no recollection as to why.
Its been a  sereal journey. The time since has been hard.

One day I am Ram, the next moment, a shell of who I was... Gloomy yes but that's what it felt like.
From being free and able bodied to being dependent on many people, predominantly my wife Julie.
One day, I had influenza, next I'm waking up two weeks later in intensive care????
I'm slowly getting back to myself but there is still a way to go...

Life's been very busy with recovery and physio, memory issues and lots of tests, investigations and  reviews by all sorts of specialists. Then there has been all the exercise, 'strengthening my core' due to the vertebral fractures I have...

No idea when or how I got these but, they are there.

I don't think there's any orifice that's not been scoped or organ that has been radiologically checked out by xray or scan.... The barrage of blood tests I've had is also remarkable that I've not needed a unit or two of blood to replace the 'arm fulls' of claret extracted from my thrombosed veins!!

I've become a patient and it is truly eye opening to be in this position.
I'm in the process of chronicling it and maybe making an attempt at writing a true story about this all. The Encephalitis Society have been very helpful to Julie, my family and myself giving us support and direction. I am indebted to them all, especially Julie who has given me the love and support I have not always returned as well as the strength to carry on. Thank you xxx.
My boys and their wives as well as my sister in law Val and brother in law Tony, as well as my mother and father in law Claire and Henry, who have been there for me. Becks and Mo for their help as well as Ambe, for his help and guidance during the acute phase... My mum, dad, brother and sister who came over when I was ill and all my friends Alan and Helen, Douglas and Irene, Jim, Linda, Jill, Catriona..... The list goes on, Cheers!!
To all my fellow Dr's and nurses who got me over this rather unplanned and dark hump, I thank you all.

I know this may read like an acceptance speech at an award ceremony but in a way it is. It is in deed an award of thanks from me to you all.

As a family, all the help, encouragement and direction we have received from everyone has been humbling and fantastic. The hard work from community services, Louise and Magda as well as the GP services, Nuffield House and Debbs has been amazing to Julie and I. The NHS is a great institution and I have given so much for so many years to it but it has paid me back when I needed it. Thank you 😌 (I'm not very good at choosing the appropriate EMOGI).
Anyway, having this perspective of healthcare professional to patient may be worthwhile to undertake, especially for me!
I'm in a space I hope no one gets to experience... I appreciate the alternative is RIP but this is not a bed of roses either.
Despair, pain and anger need to be managed and I am not always good at it.
Society imposes on us to be strong as men and as professionals... This is not always easy but hayho, life goes on.

It's not been all bad: I got to see the world cup 2018 on TV even though the team I was backing came third... Though most important of all, I got to meet our fourth grandchild, the beautiful little lady Eliza, who joins Heath, Cass and Daisy as the new leaves in our ever expanding family tree.

I have been writing a little, reading even less but painting and drawing a lot... One of my friends helped me conjure up the word 'Encephalartist'... I don't think it's been used before and I'm going to take the bizzare honour of claiming it... 😁

In the meantime, I leave you with some of my art... And a promise to get some more posts in sooner than they have appeared lately.
In the meantime, enjoy the rest of the summer, reading and creating life.... I hope you consider reading one of the books available on Amazon
If you do, please leave a review and make sure you tell others that these books exist and are in the public domain to be read and enjoyed by everyone.

Peace and love 😘

Resurrected blog

Hi all, sorry I have ignored and not updated my blog for nearly 6 months but I haven't been too well!
Back in March, I collapsed, had a Respiratory arrest, fits etc and was intubated and ventilated on intensive care.
The cause, encephalitis....
Basically my brain swelled up (that's a massive brain too...) and I nearly checked out from life.
Scary and very sad but I'm alive and well'ish...
My rehab is long and I am feeling strong but unfortunately, not there yet. However, I am a stubborn and strong willed so and so, I'll survive!

I've got my strength from my massively supportive loving family... Thank you ❤️❤️❤️
It's grown by one also... Eliza was born soon after I was discharged from hospital.
Strength and support from my many friends and colleagues too who supported and looked after not only me but the clan too... You know who you are and thanks.

I was unconscious for a while so missed the worst, acute bits, bit recovery / rehab is painful and slow...  Although I'm getting better, I have loads of residual issues left like poor concentration levels, pain and poor mobility... Frustrating and this is why I have taken this long to get back on track!
However, this is a big step for me... I've done the shorter, less deep social media things and now I'm being honest on my blog!

In the meantime, please support my blog and read my novels... RPG Books