Resilience and Me - The 8 Firsts in my life

 Having endocarditis in 2020-21 gave me a whole lot of firsts in my life. I have mentioned some in my memoir but here are ones that I can recall.

1. My first CT scan. These are fine just as long as they don't involve a cannula, which the first couple I had to have did. If you hate needles as much as me, do ask if they could put it in your arm when you are lying down.

2. My first MRI scan. I think my mum told me at the time about the loud noises you experience. They are loud even wearing ear plugs and headphones which are given to you. If you have music going on the machine, try to tune into that. It does help. Another tip is that you can't usually wear metal during the scan so if your shape allows go without a bra and wear a crop top and wear joggers/trackies or a skirt (weather permitting).

3. My first blood transfusion. I never want one of those again. It takes 4-5 hours to complete, even longer if you are like me and need the toilet often.

4. My first major surgery. One I hope to never repeat in my life. My mechanical heart valve is meant to be for life. This is why I chose this instead of a tissue valve.

5. My first pacemaker. I never expected to have one of those at all in my life. If you have read my memoir, then you know why I was fitted one. I might have to have it replaced later in life as they don't last as long as a valve. I do know that I will probably this year have to have one of the leads replaced as it is making extra noise (my body has always been complicated).

6. My first time having carers. I never thought I'd have them until I was much older. They did help me to recover at home, knowing that I wasn't alone all day.

7. My first time using hospital transport. I didn't even know that it existed until I was transferred to my second and third hospitals, and then when I came home could use it to attend my appointments. I still use it today especially to go to my main appointments at Guy's and St Thomas's hospitals. It involves waiting around for them to come and collect you both at home and at hospital but it is a door to door service.

8. Saying that, the above is another first for me – attending hospital appointments on my own. Before the surgery I always used to go with my mum as I was afraid of getting lost and not knowing what to say to medical staff due to my Asperger's. I now go to all my appointments on my own, something that I am amazed I do. I believe that it comes from no longer having a hole in the heart which made me nervous. So, one good thing did come out of that period of my life.

BTW my memoir 'Endocarditis - My Journey' got a 5 star review from The Book Dragon store, which you can read on their website. It is available to buy there as well as my website, Amazon and other ebook retailers.

Resilience and Me

 I have started blogging about being resilient, which I feel has come out in my memoir 'Endocarditis – My Journey' (available as an ebook from all good eretailers and paperback from Amazon or my website). Much of what has made me resilient is documented in there but there are other factors which aren't, namely what happened to me last year. Here are the main things I believe have made me more resilient in life over the last few years.

2020 – The year I had endocarditis and didn't know it. I just knew something was wrong with me.

2021 – My mum was ill herself, then I had to go into hospital to be treated, followed by surgery and recovery. Following my discharge and start of recovery at home, Mum came out of hospital herself and it became clear that she was changed. She had become bed bound and developed dementia. Although she had carers to help her, I became her main carer. This along with recovering mentally and physically from what I had been through, attending hospital appointments, and learning to cope with a loved one with dementia, was tough. With my Asperger's I did find it hard to deal with the carers at times.

2022 – Mum's dementia had got bad with her being nasty to me at times. Mum had an unusual stroke and went into hospital for three weeks. When she came out she had changed again to a more subdued person. So sad. Five weeks after she had come home, she caught sepsis and went back to hospital. The treatment for that cured her but caused another medical problem. The ongoing treatment and monitoring proved too much for her already frail body and she sadly passed away in August 2022. I had to cope with dealing with arranging the funeral and all the other things that go with a death in the family (but thankfully I had support from my brother and my best friend). I am now living on my own. Christmas was hard as it was the first one without her.

2023 – A new year, a different life being on my own. I plan to blog and talk about resilience in a medical capacity from this year on, based on my memoir and what happened to me.

A whole new world - learning resilience

 Staying in hospital for a long time is a whole new world. You tend to wonder what the outside world looks like, well I did. I briefly mention in my memoir each view I got with different hospitals I stayed in last year. The recent snow in the UK (nowhere near as bad as the US) reminded me of my stay in Lewisham Hospital during the Beast from the East 2. The whole park outside was white, and the houses in the distance were too. It's why I don't like snow that much now. I got another glimpse of the outside world when I was transported from one hospital to the next. Each time I was I said to myself, 'Oh, so that's what the outside looks like.' I am not sure how I managed to cope with going from hospital to hospital last year. All I know is that I just went with it. Probably knowing that I needed to go to one for this to happen, and the next for something else to happen for me. Maybe deep down all I wanted was to get better so I could go home.

It was night time, so dark, when I finally got home end of March 2021, so I couldn't see outside properly, as I knew it. I didn't see it again until the next day, and boy was I pleased to, especially my street and my garden. The familiarity was a balm to me after all the noise and busyness of hospitals. Two weeks later, when my mum came home from hospital herself, it was to lead to another new world for me, and one that took my resilience to another level.

Want a bit of magic in your life?

 

Yes, I think we all need a bit of magic in our lives at times, especially during tough periods. I for one feel that I do a lot of the time now. It is why I haven 't been here a lot this year as I have had a lot of personal and upsetting days especially since the end of August when my mum passed away in hospital. With Christmas coming up, it will be harder still for me as it will be the first Christmas without her.

Anyway, here is a bit of magic for you to read, especially for us authors. I have a short story in this anthology 'Modern Magic' called 'The Dragon Pen' which helps an author meet her deadline. Don't we all want one of those. It is available to order as an ebook or paperback here https://books2read.com/u/mvXpQz

Have fun reading it all.

Billy is having a book tour

 Who is Billy, you might ask? He is Billy from my first Rainbow School children's book called 'Billy and the Sparkling Socks.' He, and the others in the series, are all in stock at a bookshop called The Book Dragon based in Stockton on Tees. This week Billy's story is having a book tour. There is a great window display promoting the book (check the website www.thebookdragon.co.uk) and see for yourself. So far this week reviewers have mentioned their favourite quotes and character summaries from the book. Here are a few

Quotes: 

“I am good at something!” Billy shouted. He stood up, scraping his chair back. “What?” Casper challenged him. “Don’t know. I will find out.” (Andrew Bell)

Even though his socks hadn’t acted strange, he had done amazing things today. (Deborah Barwick)
“So my motto is, to find out what makes you happy and what you can be good at and work on that. Only then will you be happy with who you are.” (Tania Marshall)

Character summaries

Billy is a delightful young boy who blossoms throughout the course of the story. Initially he feels frustrated by the limitations he feels due to his condition of Autism. He has an older brother who seems to be good at everything and classmates that make fun of him. As he starts to focus on what he can do and where his talents lie, a transformation starts to happen. By looking for the positives and gaining confidence and faith in his abilities, he starts to shine and gain respect from his mother, teachers and  peers. I felt moved by Billy’s realisation that what he really lacked was self-belief and the courage to be who he truly was. As this dawns on him he starts to fly and fulfill his full potential. I could just picture him telling his stories in class and I could relate to the joy he felt from creating them, as I too loved to do this as a child. I loved how Billy showed warmth and kindness to others, even though he hadn’t always received them himself. He’s willing to help out his brother when he starts to struggle, despite how his brother has mocked him for his own difficulties in the past. (Michelle Marshall)

I related with the character, Billy. Being disabled myself, I know just how hard it is to find something you’re good at. Also, being disabled I can relate how hard it is to fit in, I know what it’s like to be laughed at, I also know the challenge of finding something you’re good at. Being autistic, Billy would’ve had a much bigger challenge in this. I was so impressed with his finding that he could tell stories, act them out, and make people laugh. He didn’t think Miss Murray and his classmates were laughing at him. Good job, Billy! (Deb Hockenberry)

So, I hope that the above will get you interested to either read the book yourself, or buy it for a small relative (7-9) that might want to read it for Christmas. There are now three places you can buy the books: The Book Dragon shop (in store or on line), Amazon or my website. 

Me and my heart

 Thursday 29 September (two days ago) was World Heart Awareness Day, it also happened to be my mum's funeral. My heart was aching with grief then and still is. 

Although a lot of bad stuff happened to me as I have put in my memoir 'Endocarditis - My Journey' there is one good thing that came from it. Here is what I wrote near the end of the book.

On the good side is that when I had the surgery, I also had my VSD closed, and having that done and/or what I had been through on my own made me able to go to all these hospital appointments on my own, something I had never done before. I feel that it is probably more to do with having the VSD closed that's made me like I am now. I was quiet and not so confident before the surgery, but after it I was able to speak out more, and go to these appointments by myself.

I still believe that this is true. I recall when I was in hospital, maybe because I was feeling very weak still, that I didn't want to walk too far in case I got lost. When I get lost, I get flustered and can have a meltdown. Since I came home last year I have been to many hospital appointments; at Lewisham Hospital, Guy's, and St Thomas's Hospitals. All to different departments and different buildings and zones. Before I had the surgery, I feel there would have been no way that I would have coped doing that on my own. It is a case of having to now, being on my own.

Onwards and upwards I say.

If you would like to read a 'very honest and inspiring' book then my memoir is available here https://www.amazon.co.uk/Endocarditis-My-Journey-Julie-Day-ebook/dp/B0B8VT2X1H

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.