Heart Awareness Month is coming

 February is Heart Awareness Month. I plan to post different things about hearts, my heart and what I have been through, resilience and maybe even videos of me talking about my journey. I have already been posting on social media my own quotes on what resilience means to me but I will be adding more during the month to come. I want to give others an idea what I am capable of when it comes to talking about heart health and being resilient with it, as I am working on a programme of workshops to talk to people about helping autistic patients with their heart illnesses and hospital journeys.

If you want to learn more from me, and you're not already following me on social media, please do follow me and let me know if you want to learn more from me.

You can find me here 

Facebook: http://facebook.com/AuthorJulieDay

Instagram: http://instagram.com/juliednomo

Here is an example of what I have been doing on FB/Meta:

Resilience is thinking Oh my as you realise what you have been through the last three years.

I hope to see some of you there.

Let's learn about heart health and resilience.

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 I knew that my previous image of the future was out of date.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.

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.