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.

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.

My inspirations for the Guardian Angels series

 As part of  #IndieAuthorWeekUK I am blogging about the inspiration behind my books, starting with my teen fantasy series 'The Guardian Angels'. The first book 'The Railway Angel' came from a dream I had about a girl saving a man who planned to jump from a railway bridge. I wrote this and sent it to my editor who suggested it was better that she saved a person her own age. Danny was born. He appeared at the end of Book 1. I then thought that he could be reckless and gave him a motorbike. The Racing Angel was born. I was going to write about different angels but my editor commented it would be best to continue with Lizzie and Danny, so I decided to give them missions resulting in graduating. They would help each other preventing other teens doing stupid suicidal things. Book 3 'The Railracing Angels' came from something I read at the time about teenagers hanging on the end of trams as they went along. Book 4 also came from something I had read about young people leaping from one hotel balcony to another. Along the way I also thought that they needed someone trying to stop them from saving the other teens, and the devil was there. The last book in the series, 'The Fire Angels' came to me after the London 2011 riots, when people set fire to shops and buildings. So the series was finished. I liked writing them, as they are short reads.

You can find them all here. https://www.smashwords.com/profile/view/julieday40. They are all at the eretailers too. The Railway Angel is perma free.

Writer's block or something else?

 Now that I am back to writing short children's fiction again, I got thinking about the book I was trying to rewrite last year and got stuck on half way through. Was it writer's block or something else? I had plotted it out chapter by chapter but still got stuck. I decided to leave it and concentrate on another book I was writing because of my health issues back then. After reading lots of children's books (for research) I have come to the conclusion it wasn't writer's block that stopped me but maybe I had made the plot too long and complicated. I was adding different things to it about eating healthily and what food intolerances can do along with magic but maybe now I just need to think of simpler things to put in it. I will go back to working on that story again but probably not this year, maybe next year. I want to concentrate on the new series I am writing now, which I am enjoying doing. 

So, if you are getting stuck with your wip, then have a think about it? Is the plot too long? Too complicated? If you find it complicated, so will the reader. Can you make it simpler? I am going to try when I get back to it.

In the meantime, have fun writing whatever you are on.

Why I love being an indie author

 I am sorry I haven't been on here these past few months, but if you know me on Facebook you will know why. For those who aren't, then the short story is that my health took a bad turn and I had to go into hospital. I had to have major heart surgery to replace a heart valve and a pacemaker fitted. I was in for nearly 8 weeks. I came home to an empty house because while I was in hospital, my mum had a fall and ended up in another hospital herself. She is back home now but bed bound with carers coming in to do her personal care and meals four times a day. I am still recovering but back to writing as an indie author. One of the reasons I love being an indie author is you are only accountable to yourself and when something happens like the above and you can't write, then it is a relief. 

Apart from a couple of ideas for short stories I jotted down pre-surgery, I didn't do any writing. I couldn't. It took so much effort to recover and get moving by myself again. It was only when I was home and after a couple of weeks when I read writing magazines that I thought about writing. Before I went into hospital I was half way through writing a cozy mystery but I didn't fancy writing that. I started reading children's books and decided that I wanted to write something new like that. I already had a few ideas jotted down. One came to me but it was all muddled in my mind. Then I saw a second idea and it jumped out at me. This is what I am now writing. A new series for 7-9s. I am enjoying writing again.

A reason I love being an indie author, you can write what you want and when. Imagine what might have happened if I was under a traditional publisher and writing that book... I will go back to working on the mystery some time but I am having fun writing for children, esp when the characters have Asperger's. It is under my 'autism meets magical realism' brand and 'learn about autism' umbrella.

Enjoy what you are writing and have fun with it.

My writing goals for 2021

 As I do each year, I create a few writing goals for the year. I have worked out a few according to my health, my mum's health and what is going on in the world right now.

1. I am going to continue to write and send short stories to magazine. There is one particular one in mind which published two of mine last year. I plan to send stories to others as well which don't take all rights. I am currently waiting to hear back about one but feel that will be ages now due to the lockdown.

2. Publish Book 6 in the Rainbow School series. This is Erin's story who gets to dance with Alistair.

3. Write and publish the first of my new cozy mystery series I am working on. Am  having fun with this one esp as I have been writing two main character povs which I don't normally do.

4. I might finish the first draft of the rewrite of Rosie. Am a bit stuck on it at the moment. Not sure if it's best to concentrate on one book at a time.

5.  Continue renewing covers for Geraldine's Gems series to create that brand more.

Well, I think that is all my goals for this year. I feel that is enough for now.

Happy writing.