What happened to me in 2020 and 2021

 So what happened to me in 2020 and 2021? What did endocarditis do to me? Find out in my memoir 'Endocarditis - My Journey- either as an ebook or paperback here https://www.amazon.co.uk/Endocarditis-My-Journey-Julie-Day-ebook/dp/B0B8VT2X1H

I can reveal that it was a shock to me what happened, and it still makes me emotional when I think about it. I can also reveal that the heart beat line on the cover runs through the book, and the colours of blue and red have a meaning which is on page 110.

The ebook is also available from all good ebook platforms.

I hope you like my writing.

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.

Happy May Day holiday

 To all of you who read this from the UK, Happy May Bank Holiday. The sun might not be out but at least it's not raining, yet. 

Sorry I've not been on here recently but life gets busy when you're a carer for your parent who's bedbound and has dementia, and has their own health matters to deal with including lots of appointments to attend. Thankfully the appointments seem to have decreased at the moment now that I've been out of hospital over a year. Where did that year go?

So, what have I been up to? Well, I have recently published a children's colouring book to go with my Rainbow School children's series. It's an A-Z of Autism and you can find it here https://www.amazon.co.uk/Rainbow-School-Autism-Colouring-Book/dp/1915114012.

Also, I have had a short story accepted for an anthology about modern magic in life. My first story in an anthology and I am super excited about it. It means that my writing has merit with someone else. I will let you know when that comes out. It won't be yet as there will be edits to work on and then a contract to sign.

I am also working on my memoir still about having endocarditis. I am reading through it to make sure there aren't any more things I can remember to add in it. Then I will check through it with my diaries and calendars. I hope to have that out by September. The cozy mystery I hope to have finished and ready to publish for Christmas.

Meanwhile I am going to Sydenham library most weeks to take part in craft lessons, and have copies of my books with me. So, if you are near there on a Thursday lunch time, then come and say hello.

I think that is my current news for now. Any more and I will let you know, sooner than later.

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?

An Aspie in hospital - routine

One thing we Aspies like is routine. I certainly do. So when I went into hospital, that went out of the window, as they say. But...they do have their own routines, which in their way did help me cope.

Meals – The meals all were dished up at certain times of the day. If they were late, which sometimes they were, and I got hungry (hangry), then I'd be angry. At least I knew what time of the day it was. The meals I had is another post as I have various food intolerances.

Medications – This was one routine I had to get used to and accept. I had my own routine, especially with the two tablets for my IBS. I always took them as it said on the boxes; before a meal. Did that happen there? Nope. They had their own system, plus they had to order one of them in. I even had a go at one nurse about this and she had a go at me. (I wasn't the only patient to have a go at this nurse – she was an agency nurse not a ward nurse). That is another story. I came to accept the new routine but one thing I hated, or it annoyed me, was to be woken up at 10pm with 'Julie, time for your medication.' Hmm.... Grr.... And especially when I was about to get to sleep. This was the same for what they call Obs (observations) such as taking blood pressure and temperature. Another way I knew what time it was.

Nurse shifts – 8am and 8pm. This was the routine at most hospitals, especially in the High Dependency Unit at St Thomas's. When the changeover happened, I knew it was eight in the morning or night.

Lights out – When the lights either went on or out, I knew what time of the day it was. I could wind down in the evening, knowing I was about to sleep for the night. (Sleeping in hospital is yet another post).

All these routines helped me to cope being in what was a strange environment for me, especially in lockdown, and no one could visit me.

I am currently writing my memoir about my journey with endocarditis, including my hospital stays.

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.