Resilience, Asperger's and the biggest change in my life

 I have been talking on here about being resilient. I have also been mentioning that people with Asperger's, like me, find it hard to cope with change. I feel that resilience and change go together, especially with me at the moment as I am going through the biggest change in my life (not talking about the perimenopause which they can call the change). I am of course talking about living on my own after being with my mum all my life. There have been times over the years when I did wonder how I would be and where when I was on my own, but it is nothing like I feel now. Here is how I thought about it over time.

As Mum's health and therefore her mobility got worse and she had to walk with a stick, I did wonder what would happen to me. I imagined at the time that maybe we could live in separate houses/flats next door to each other so we would still be there for each other when needed.

Then came 2021 when I came out of hospital and Mum came home, bed bound and with dementia. I knew that my previous image of the future was out of date. I now imagined that Mum's dementia would get worse until the time came that she had to go in a home. It would be a time of transition for me, getting used to living on my own before such time Mum wasn't  here any more. 

Then came last year when Mum came very ill and went into hospital, twice. That was a period of transition where I would visit Mum in hospital and come home to live alone the best I could. The year and a bit when Mum was home with carers taking care of her needs, was also a time of transition I believe, as I was the one who was doing all the work here at home as Mum no longer could. 

Until... the day came when I got the news she had gone. I miss her so much still.

In a way it is like I am sort of continuing life as I did when she was in hospital but deep down I know she isn't there. I get lonely. I get sad. At times it feels surreal still. My inner resilience dips at times when I cry. Thankfully I have the support of my brother and my friend to keep me going, most of the time. I also believe that Mum helped me cope with life over the years, especially the practical things such as washing etc. 

So, yes, resilience and change go together, as I believe you need some resilience to cope with change, especially when you have Asperger's.

When robins appear...

 Do you know the rest of the phrase? When robins appear, loved ones are near. I saw two robins together on the fence earlier today and it made me both smile and cry. They were together as they weren't fighting which robins are tend to do being territorial birds, so I guessed they were a couple. This made me wonder if they were there as my mum and dad visiting me to check up on me and see how I am coping. I do like robins. I don't normally think of robins that way, but today happens to be National Cardiac Rehab Day, a day that can be appropriate for me after what I have been through. Do you believe in the phrase?

If you want to read all about my 'inspiring' cardiac rehab journey when I was in hospital after heart surgery and when I came home two years ago (can't believe it was that long ago), then my memoir 'Endocarditis - My Journey' is available to buy as an ebook from all ebook platforms, and as a paperback from my website www.julieaday.co.uk, from Amazon and from The Book Dragon shop either on-line or in person at www.thebookdragaon.co.uk.

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.