If you would like to know more about autism, there is one good way and that is to meet me. I will be at
Come and say hello to me. Find out more about autism, me and my children's autism books. There will be lots of other crafts being sold too. Possibly home made greeting cards, art and gifts.
Hope to see some of you there. Let's celebrate National Autism Awareness Month together.
I thought I'd ask this question because something a cab driver said to me about autism on Wednesday made me think, what do others think autism is. This is what was said (not exact words):
I had told him where I was going and he asked me what was happening at the church. I replied that it was an autism family day for autism families organised by an autism charity.
The driver said something in the line of 'oh, autism can be funny with their routines and that. I drive a boy to school.'
When he said that, I thought, Mmm...
So I said, “Yes, we can be like that.”
He then said, “Oh, are you autistic?”
“Yes, I have Asperger's.” I then tried to explain to him why we like routines. I said it was to do with familiarity and the brain. If we were to go to a different place, our brains would get confused and we would have trouble transitioning from one place to another.
I think he apologised when I said I have Asperger's.
I hope that is what routine means to other autistics. Please let me know if this rings a bell with you. What does autism mean for you?
I have read that there are lots of different co-morbidities (don't like that word) that come with autism, and one of them is congenital heart defect. I had one of them, being born with a hole-in-the-heart (medical term is ventricular septal defect). If this is you, or you know someone with this, please read what I have to say. It might not happen to everyone who is autistic and has a heart defect but it can happen, which it did to me. In 2020 I fell seriously ill and didn't realise how serious and complicated it was, until 2021 when I ended up in hospital and being diagnosed with endocarditis. I had a blood test which revealed I had a bug in my blood. That bug had got into my blood stream and then to my heart via the hole-in-the-heart that was there. It then found the leaky heart valve I had (medical term for that is aortic regurgitation), where it made the valve worse so that it spread throughout my body during that year. It infected my valve so badly that it needed replacing, and I now have a mechanical heart valve. The hole-in-the-heart was stitched up during the main surgery.
So, how did the bug get in my blood in the first place? Well, I am not completely sure but I still think it was during a dental hygiene appointment when my teeth were being cleaned. This was before Covid, and procedures have slightly changed since then. If you have a congenital heart defect you will probably have a special card to take to your dentist when having treatment about having to have antibiotic cover. If you do have one of these, please use it and make sure your dentist/dental hygienist adheres to it. It is important to your health and heart. I will expand on that next week.
If you have a heart defect or even a leaky heart valve, please take care of both your heart and teeth. They are closely linked as I have found out to my own health, even if I did take the antibiotic cover on that day.
I am aware that not all autistics might have a heart defect, and not all people with heart defects are autistic. I have met a couple of people (both ladies) when I was in hospital both times who had heart defects and weren't autistic.
If you would like to know more about how I coped with his heart infection and why I am passionate about it (dare I say it is close to my heart), then why not read my memoir 'Endocarditis - My Journey'. It is available on all digital platforms as an ebook, also as a paperback via my website (UK only), and from The Book Dragon bookshop instore and on-line.
I have talked about how I was as a child with a heart condition but what about when I got older and became an adult. Well. If I had to walk so far, then I would have to stop along the way and get my breath back. I would also get a stitch in my side. I couldn't walk too far or too fast. I would get that stitch, and/or get out of breath by the time I got to my destination. I certainly couldn't run that far, either. For the bus, yes, but that was it. The last time I remember really running for a bus was several years ago now. My mum and I had got to one bus stop to see the bus we needed to go on to where we wanted to get to. The bus had to go round a main route which included traffic lights to get to the next stop. We walked fast with a bit of running. We made it and got on the bus, but it really puffed me out. I had a stitch in my side, I was out of breath, and I had a pain in my stomach as I was gasping for air. It was the worse I had been that I recall. I vowed not to do that again. I don't think we did.
Now that I have had the surgery and don't have the hole-in-the-heart, I think I might be all right that way. I don't know yet as I now walk with a stick due to balance issues caused by the perimenopause. So at the moment just running a little bit makes my balance even worse. I would like to think that I would be able to move like that without the stitch and the breathlessness. We shall see. I plan to build up my walking over time when it is warmer.
#HeartAwarenessMonth #hearthealth #adultcongenitalheartdisease
If you want to find out what happened to me so that I no longer have that hole in the heart, then it is all in my memoir which can be found either via my website, The Book Dragon bookshop, Amazon or all other digital platforms as an ebook.
As mentioned in my last post it is Heart Awareness Month and I have been posting on social media all about heart health. I have also been posting bits about my memories of being a child with heart problems. Here is what I have been doing.
So I had a heart defect from birth. How did it affect me as a child? It made me physically slower than others. I remember when we played rounders at primary school (anyone else remember that?). I never used to be able to run past the first base. If I did, then I would stop, then run to the next point.
When I was at secondary school I was always one of the last to be chosen for team sports. I always knew that it was because I was quieter and slower than the others. I hated netball if I was in the team. Was anyone else the last to be chosen for team sports?
Another time I remember about being at secondary school with my then heart condition was a sports day. The rest of the school had to walk to the sports field, which was quite near the school but because of my heart condition I couldn't walk too far or fast so I was given permission to get a bus with a few others. Of course, the bus was late, so we were late. I think that when we got there we didn't know where to go either. When we finally found our school and class, the sports events had already started.
Do any of these relate to you, at all? Let me know either on the comments or find me on FB.
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.
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).
