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.

The missing bits from the memoir - The 'Be Still' rule

There are a few things I know that I didn't put in my memoir, especially about when I was recovering at home. One of these was the difficulty I had doing every day things such as combing my hair as I wasn't allowed to lift my right hand above my head for six weeks. Why was this? Well, I had a pacemaker and its leads fitted, and to let them settle in properly you can't move about too much otherwise they wouldn't work too good. So when I came home in 2021 for six weeks I couldn't comb my hair properly, I couldn't wash it (it hadn't been washed for weeks anyway because of being in hospital), I couldn't moisturise my neck properly, I couldn't move the wheelie bins out by myself as I wasn't allowed to move/lift heavy things. Oh, and it was difficult to put on clothes over my head such as nighties or T-shirts. One of the carers I had did show me how to do it.

So why am I mentioning it now? Well, very soon, probably October, I am going to have to go into hospital again to have a pacemaker lead replaced as it is making extra noise. They want it changed before it causes any problems with me. I am going to have to follow the 'be still' rules for four weeks this time. I shall have to practise putting on clothes over my head like the carer taught me. And practise combing my hair with my left hand.

As I told the consultant, if I have to have it done, I will have it done. I am not looking forward to it as this time I have to go under general anaesthetic. Last time I had it done under local anaesthetic.

Meantime, I am making the most of my time at home in my own comforts, and getting on with my writing. I have plans to create more books and journals to go with my memoir (you can buy it from my website or from The Book Dragon website here www.the-book-dragon.com). I want to turn my memoir and its journals into a brand about resilience and make a business out of it alongside my children's books. I plan to take blank journals in to hospital with me this time so I can write in them when I feel like it, and get an idea of what I can put in the guides I want to write with the gratitude journals I have in mind.

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

 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.

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.

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?

Being an Aspie in hospital - Talking

Having Asperger's I always thought if I had to go into hospital again I would want my own room to have privacy. Little did I know that that time would come in February this year. I didn't have a room of my own at any time.

I first went into University Hospital Lewisham, London, on 4 February. I was admitted to a ward with only women and in a bay of four beds. The beds were spaced out well so I didn't really have much to do with the other patients. After a couple of weeks and lots of scans and tests, including daily blood tests and being on an IV antibiotic drip, I was transferred to King's College Hospital, London. It had been discovered that the slow growing bug in my blood had damaged my heart, and King's had a specialist team. So off I went.

In King's I was in a smaller room where it was only the two of us, so more chance to talk. I only started to talk to the other lady there when she began to get out of bed when she shouldn't have. I had another test which revealed it was endocarditis I had. They decided I needed surgery and St Thomas's Hospital, London, would be best for me as they have an even more specialist team there who deals with adult congenital heart disease. So off I went.

This is where I did talk the most to other patients. I now think it was due to us all being there with heart problems (one lady even had the same condition as me) so had things in common to talk about. I introduced myself and we talked. I feel that having others there in the same situation helped me to cope with it all. I was in that first ward for two weeks before I had surgery. The next thing I remember is being moved to the High Dependency Unit. The beds were spaced out well and I was too weak and focussed on recovering to talk to others, except the nurses who took care of me. A few I did chat to, when I got my voice back, and told them how I felt about being there. It helped me. After a few weeks, and a pacemaker being fitted, I was moved back to the first ward I had been in. I talked to the lady in the bed opposite to me. Again, I think I was able to as we were all there with heart problems. And again, I feel that it helped me to talk to others, which helped me to cope being there on my own. I did chat to my brother and friend on the phone nearly every day but having others there helped. In the last ward I was in, only for one day, I briefly talked to one of the ladies there.

So my experience as being an Aspie in hospital wasn't how I imagined it to be. I now feel that if I had been in a room on my own, I would have felt lonely and miserable, and wouldn't have got better as much as I did.

I realise that not everyone with Asperger's would want to be in a bay with others and want to be on their own.

If you had a second chance of living...

If you were given a second chance of living, what would you write?

As I have mentioned before, when I came out of hospital and I read children's books, which are short, that is what I wanted to write. I still do, even more so now. Why? It is something that my friend said to me the other week when I told her that I think a lot about what I went through and still can't believe I did. I knew that post surgery I had major problems health wise and to help my heart I was put in an induced coma for 3 days (I am not telling you this to horrify any of you), but what I didn't know was that I nearly died. I am lucky to still be here today and write. I feel that I have been given a second chance at living and writing.

So, I am working on building my confidence to go out again, and am writing what I love writing; children's books. I will be publishing the final book in my Rainbow School series later this year, and have started Book 2 in my new series. They all feature characters finding confidence in their lives especially having Asperger's like me.

One of my books does have a character who gets a second chance at being on Earth and helping her family. That is Book 1 of Geraldine's Gems series called 'One Good Turn'. You can find it on all eplatforms including here https://www.smashwords.com/books/view/217509

It is another reason why I am celebrating IndieAuthorWeekUK. I love being an indie author.