Endocarditis - My Journey

 https://www.amazon.co.uk/dp/B0B8VT2X1H

I tried to post above the cover image for my memoir but it wouldn't let me for some reason, so I have put the link instead. 

I know we are all feeling such sorrow at the moment (me more than most as my mum passed away in hospital the end of August) after the Queen dying. I thought I would post something could, and that is a review of my memoir all about coping and surviving endocarditis (infection of the heart).

AUTHOR- Julie Day
PUBLISHER- Happy Day Press
PUBLISHED ON- 5th Aug, 2022
GENRE- Autobiography
RATING- ⭐️⭐️⭐️⭐️⭐️

" ENDOCARDITIS IS ALIVE AND WELL, UNFORTUNATELY "

ABOUT AUTHOR- Julie Day writes realism for adults and children featuring helpful ghosts and magical things.

BOOK DESCRIPTION- Julie's Journey of endocarditis from symptoms to recovery.

BOOK REVIEW-

Book is the Journey of Author's serious heart illness and her struggle to recover it. Endocarditis is a heart disease when bacteria or other germs enter the bloodstream and travel to heart to stick to damaged heart valves or tissues. It is rare and potentially fatal infection of endocardium.

On the basis of rough statistics, the mortality rate of endocardium is 29% and this issue of concern.
Endocarditis has challenged clinicians for centuries. Despite recent advances in diagnosis $ therapy, the risks of major complications $ death remain unacceptably high. This is a major public health problem. The solution to this conundrum is not easy. It is unlikely that we will be able to eradicate this illness at any time in the near future. However, we can certainly make greater efforts and prevention.

Julie shared her journey of symptoms like weight loss, muscle pain, tiredness, breathlessness,chills $ many more from 2020 to 2021. Struggle she faced throughout the recovery process, the tests, the hospital stays and switchs, the surgery, post recovery at hospital $ home. All during pandemic which turned her life upside down. She inspires all of us to cope any situation and book guides anyone who wants to learn about heart condition personally or medically.

You have to fight through some bad days to earn the best days of your life. Just because you can't control what life throws at you doesn't mean you can't control how you handle it and this is very well thought by Julie in her book.

To author- The strongest hearts have the most scars.
I'm glad I came across this inspiring journey.
SALUTE TO AUTHOR FOR HER BRAVERY 🙌

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JOURNEY | STRUGGLE | INSPIRING
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I hope inspires you to want to read this too. 

I have a question to ask you all. I am planning to create a talk with a workshop based on this, and am wondering what you would like to learn or know either about endocarditis and/or coping with a serious illness. Please let me know in the comments so I can work on this talk. Thanks.

Books at Beckenham - Meet local authors

 

If you are in or around Beckenham this Sunday, come and meet some local authors including me. As well as books being sold, there will be hopefully a storytime happening for children aged six upwards. I will be there selling my children's books and my new memoir 'Endocarditis - My Journey' all at special prices. You will get a free coloured paper bag of your choice (blue, black, green or red) and a bookmark to go with the memoir. Here is an excerpt of my memoir: 

September 2020

I can't remember what happened in this month, except I was still losing weight. It might have been this month that I started to experience another unpleasant symptom. I have never liked finding loose hairs in places they shouldn't be such as on soap bars or places where I eat. I can't recall how it started, but one day I found a loose hair and OMG, I felt ill! I wanted to be sick. I actually retched. This would happen quite often, and on a few occasions I was actually sick. I hated it. It put me off my food if I found one on the table as I was about to eat. I googled this. There is a name for it, but I can't recall it. What I do remember seeing is that one of the causes was infection. I didn't think anything of it. When I mentioned it to my mum, she said that she used to be like that when she was younger, so I thought that I had taken after her, like with a lot of other things. I didn't know that it was part and parcel, as they say, of a bigger health issue.

I hope to see lots of people there. 

What happened to me in 2020 and 2021

 So what happened to me in 2020 and 2021? What did endocarditis do to me? Find out in my memoir 'Endocarditis - My Journey- either as an ebook or paperback here https://www.amazon.co.uk/Endocarditis-My-Journey-Julie-Day-ebook/dp/B0B8VT2X1H

I can reveal that it was a shock to me what happened, and it still makes me emotional when I think about it. I can also reveal that the heart beat line on the cover runs through the book, and the colours of blue and red have a meaning which is on page 110.

The ebook is also available from all good ebook platforms.

I hope you like my writing.

Aspie and change number two

 Sorry I haven't been on here lately. So much has happened since Mum came home in June after her stroke. She was more subdued and quieter than before. Then a couple of weeks ago she caught a chest infection leading to sepsis. She is on the mend now and possibly coming home sometime next week.

Anyway, coming home from hospital was the next change in my life. I would be on my own as Mum was still in hospital herself then. Time to recuperate by myself. One change that was immediate was the layout of downstairs. Mum and I both had our beds brought downstairs by my brother. Here is what I wrote in my memoir coming soon.

 Alone, I sat down, put my head in my hands and said, “I'm home.” It was a different home to when I had left back in February. The living room was now a cum-bedroom with both my and my mum's beds in there. The sofa was now in the dining room with Mum's clothes on it. The dining table had been dismantled and put upstairs. All done by Ian. What an amazing brother!

The second change was me having carers coming in to help me. I never thought I'd have carers, not until I was older anyway. It helped me a lot. But being on my own, having to do things by myself, was a major change for me. It was the longest I had been on my own in the house for ages. Up until then the longest I had been on my own was a weekend in 2016 when Mum was in hospital. It really helped me find my feet, and I feel now that it stood me in good stead for future times when I have to be on my own, like now. At least I know now that I can and am able to live on my own when the time comes, which I know it will sooner than later.

Aspies and change

One thing that people with Asperger's find hard to cope with is change. Well, I certainly went through a lot of that last year when I went into hospital. That was the first major change to my life. I think it helped me because I knew in advance (the day before) that I was going in, and I knew that I had to go as it would help me and my health. Then came more change as I went from one hospital to another to find out what was wrong with me. Again I knew it was to help find out what was wrong with me. I somehow managed to cope with all of that change until there was one change too many for me. I have described it my memoir like this

 I went from the quiet of ICU to the noise, lights and busyness of Doulton High Dependency Unit. The contrast was amazing. One thing us Aspies do find hard to cope with is change. This change was hard for me. I had coped well with going into hospital, then from one hospital to another and another, but this was something else. I think now it was that plus being in a strange environment that made me unable to sleep for three nights.

Once I got used to the routines and everything happening to me in that ward, I calmed down.

There was more change to come when I got home, and then Mum came home too. I shall tell you about that in the next post.

Happy May Day holiday

 To all of you who read this from the UK, Happy May Bank Holiday. The sun might not be out but at least it's not raining, yet. 

Sorry I've not been on here recently but life gets busy when you're a carer for your parent who's bedbound and has dementia, and has their own health matters to deal with including lots of appointments to attend. Thankfully the appointments seem to have decreased at the moment now that I've been out of hospital over a year. Where did that year go?

So, what have I been up to? Well, I have recently published a children's colouring book to go with my Rainbow School children's series. It's an A-Z of Autism and you can find it here https://www.amazon.co.uk/Rainbow-School-Autism-Colouring-Book/dp/1915114012.

Also, I have had a short story accepted for an anthology about modern magic in life. My first story in an anthology and I am super excited about it. It means that my writing has merit with someone else. I will let you know when that comes out. It won't be yet as there will be edits to work on and then a contract to sign.

I am also working on my memoir still about having endocarditis. I am reading through it to make sure there aren't any more things I can remember to add in it. Then I will check through it with my diaries and calendars. I hope to have that out by September. The cozy mystery I hope to have finished and ready to publish for Christmas.

Meanwhile I am going to Sydenham library most weeks to take part in craft lessons, and have copies of my books with me. So, if you are near there on a Thursday lunch time, then come and say hello.

I think that is my current news for now. Any more and I will let you know, sooner than later.

An Aspie in hospital - sleep

 I don't know about you, but I can never sleep properly in another bed. So being in a hospital bed was no exception. I didn't sleep too bad to start with despite the sensory challenges of noise and lights about me. I slept in normal beds with controls at the side in both Lewisham and King's which was OK. It was when I got to St Thomas's that I had problems. I was able to sleep on my side like I do here at home but when I was at St Thomas's I had a portable heart monitor wired to me which was connected to the monitors in the corridor outside. I was unlucky and got a faulty monitor. It kept on going wrong and the batteries kept running out, especially when I was in bed asleep. I was often woken up by a nurse asking me if I was OK as the monitor wasn't showing up. There was even a time when I was fast asleep and I was woken up about it. Yes, I was fine until you woke me up. Grr... There was a time that I slept so soundly that I didn't hear the blood transfusion IV machine beep to let me know it had either stopped or run out of battery. The lady next to me had to get out of bed and find a nurse to turn it off. I knew nothing about this until I woke up that morning.

Then I had my surgery, was in ICU (don't remember much about that, thank goodness), and moved to the High Dependency Unit. Oh my. The noise, the lights, the busyness, that bed. The strangeness of it all. I couldn't sleep at all the first few nights (more in my memoir to come). The bed was a special one that helped to prevent bed sores and went up and down under you. Not good when you have diarrhoea due to the antibiotics you are on. Oh, and yes the tubes all about me stopped me from lying on my side. I had to sit up, facing up to go to sleep. A position I wasn't used to. After the fourth night I started to doze off now and then and slept better. When I finally returned to the first ward I was in, I slept much better. No tubes, no monitors and quieter. I recovered more there as I was told I would do. 

But nothing is best than my own bed. Who agrees?