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.

Me and food sensory

Following from my last post, I am going to mention other foods that I don't like because I feel that they taste raw to me. Thinking about potatoes made me recall these.

Avocado – I know that some people do like these, but I don't. The only time I tried one, years ago, I didn't like it because to me it tasted too raw to me. I know it is a raw food but I just don't like them.

Asparagus – Again I have tried this only once, when I was at a writers' dinner and I thought let's just try it to see what it's like. Nope. Didn't like it. Tasted of nothing to me. Maybe it has that raw feeling for me too.

Broccoli – I tried this once as well and didn't like it. Too bitty for me. I now believe that it had that raw taste to it too.

There are other raw foods that I can't eat such as apples and pears, but that is because they are high in FODMAPs which give me IBS. In other words, they are too much fibre for me. A lot of foods that they say are healthy and good for you, I can't eat because they are too much for me, namely dark green and leafy vegetables. I can eat Brussels but only a few at a time, otherwise they will give me stomach pains. I think this is a reaction against the warfarin I have. Brussels contain vitamin K, and too much of that can have an effect on the warfarin and change the INR levels (blood clotting levels). 

Me and potatoes

I am sorry I've not been on here for ages but been so busy. I went into hospital in November. When I came out it was my birthday. Then it was preparing for Christmas. That was over and now it's new year. Here we are in 2024 already. 

I recently posted this as an article on LinkedIn as part of my sharing experiences as an Aspie. I thought I'd share it on here too.

I have recently read a memoir about a mother of four autistic sons and how she fought for the learning and education they needed to be able to speak and learn for their futures. In it, she mentions that one of her eldest sons explained why he never liked mashed potato for years. It made me think of my feelings towards mashed potato and other forms of potato. I have never really liked mashed potato as it reminded me of school dinners when it was lumpy. It put me off it. If I ever had it at home or elsewhere, I would mash it up with a fork to make sure there were no lumps. I still don't like it now, but if I have to have it then I will have something else with it eg baked beans or tomato ketchup to give it flavour. Maybe I think it is too bland. Or it could be that on its own I feel it tastes too raw. I don't mind it on cottage pie or shepherds pie. Possibly because as it is on top of meat, the meat gives it flavour. When my mum made it for us, she would mash it with our spread before layering it on the meat. This also gives it more flavour. I will eat boiled or new potatoes but like mashed potato I have to have something else with it to give it more flavour. With boiled potatoes I used to like them in a casserole, especially with herbs and stock. My mum used to cook a lovely chicken casserole and it made the potatoes more palatable. With new potatoes I have some of my sunflower spread, or I might dip it in beetroot juice if I have beetroot with them. Again it might be because I think the taste is either bland or too raw.

I don't know if this is an autistic thing, or other people who are non-autistic feel the same way as me. Please let me know.

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.

Meet Sammi squirrel at Beckenham

 

This is Sammi an unlucky squirrel who features in my first picture book for children of 3-7 years-old. I first wrote the story some years ago and it was published as a fiction story in a small press magazine about animals. His story sat on my computer for years after that until this year when I decided to show him to the world as a picture book. I am so pleased with it. It is out now on Amazon here https://www.amazon.co.uk/dp/191511408X. Or if you want to get a copy in person from me and at a discounted price, I will be at the Beckenham Book Festival next Sunday 2 July at the Coach and Horses pub, Burnhill Road, Beckenham. There will be lots of local authors there and we will be selling our books in the beer garden at the back of the pub. I will also be selling my other children's books and my memoir. Come and say hello to us all. Here's hoping for a day like today. Sunny and no sign of rain.

An Aspie and another change at home

 When I last wrote about a change in home, it was about me coming home after hospital and having carers myself. Those two weeks went and Mum came home, and that was the next change. I had spoken to Mum briefly on the phone a couple of days beforehand, thanks to a kind chaplain. Mum's voice then, which sounded frailer, should have made me realise how she would be when she came home but I was just glad to see her again. That day was really hard for me as I saw how Mum was for the first time. She was confused to where she was, which is a sign of delirium. Also she said some strange things to my brother. It was to be the start of her time with carers doing her personal care such as washing her. Although Mum had been very slow at walking before I went into hospital, she had been independent still and able to walk round the house. Do cooking and washing etc with me. So it was hard to see her stuck in a hospital bed and having carers see to her personal needs. Having experienced that myself during my own hospital stay after surgery, I knew what it was like. It can make you feel useless and frustrated. I had hoped that seeing me be able to walk about again might encourage and inspire Mum to do the same, but it didn't because her brain had changed with dementia and she didn't want to. I think she might have still been depressed at the time. I had to get used to seeing a new Mum, one who was confused a lot of the time and started saying weird things. Although Mum had had carers helping her before I went into hospital, these were new people, and it was hard to get used to at first, even though I did think that it was good that Mum was having the same carers day after day so she wouldn't get confused so much.

Did I get on with the carers? That is another story.

PS I know that the term 'Asperger's' isn't used anymore because of the history of the man whom it was named after, but I was diagnosed with it, so that is what I say and call myself. I also say I am autistic.

Be empowered to help your health

 One of the things that I regret not doing during my journey of having endocarditis is tracking what happened to me properly. I wrote in my diary now and then, appointments on a calendar but not everything that I went through esp the symptoms getting worse. It all ended up in my head and on hospital letters. When I wrote my memoir, I started to get an idea about creating a journal for this purpose. I actually have this in my memoir that I intended to create one to help others who have either been in my situation or could be. Well, at the beginning of this month, it came to life. I wrote it all over the last months and published it this month. The contents of the guided pages reflect all that I went through and mention in my memoir. So, if you are experiencing a serious illness, including endocarditis and any other heart conditions, then check out my journal. It will empower you to know what is going on with your health. You can find it here. https://www.amazon.co.uk/Endocarditis-My-Journey-journal-condition/dp/1915114055

Or if you know of any one else, esp hospitals, that might be interested in a copy, please let them know.

Be empowered.