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. 

Where has my voice gone?

 There is one thing I do remember when I was in hospital two years ago, and I thought I had put it in my memoir, but it is not there - I lost my voice. I remember maybe it was a couple of days after I had been transferred from ICU to the High Dependency Unit, I went to talk to a nurse and nothing came out but a whisper. Why couldn't I speak? Where was my voice? I briefly wondered why I couldn't talk. I remember thinking the only way to get my voice back was to practice talking, which is what I did. Whenever I was alone, I would whisper hello to myself. After a day or two of doing this, I got my voice back and I could ask for help properly. Now knowing what happened to me after the surgery, I know why I lost my voice. I had been in intensive care in an induced coma for three days on a ventilator helping me breathe. With having that in my throat, and not being able to talk for at least a week, my throat must have dried up. That is the only time that I recall ever having lost my voice. I might have got close to it with a bad cold at one time, but not like that. If you have read my memoir, then you will know that I made up for the time I couldn't talk after that. Lol.

Find out what happened to me two years ago in my memoir out now either via my website, Amazon or The Book Dragon (in store or online). It is called 'Endocarditis - My Journey'. One journey I don't want to go through again. You can find it here https://www.amazon.co.uk/Endocarditis-My-Journey-Julie-Day-ebook/dp/B0B8VT2X1H

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 - The 8 Firsts in my life

 Having endocarditis in 2020-21 gave me a whole lot of firsts in my life. I have mentioned some in my memoir but here are ones that I can recall.

1. My first CT scan. These are fine just as long as they don't involve a cannula, which the first couple I had to have did. If you hate needles as much as me, do ask if they could put it in your arm when you are lying down.

2. My first MRI scan. I think my mum told me at the time about the loud noises you experience. They are loud even wearing ear plugs and headphones which are given to you. If you have music going on the machine, try to tune into that. It does help. Another tip is that you can't usually wear metal during the scan so if your shape allows go without a bra and wear a crop top and wear joggers/trackies or a skirt (weather permitting).

3. My first blood transfusion. I never want one of those again. It takes 4-5 hours to complete, even longer if you are like me and need the toilet often.

4. My first major surgery. One I hope to never repeat in my life. My mechanical heart valve is meant to be for life. This is why I chose this instead of a tissue valve.

5. My first pacemaker. I never expected to have one of those at all in my life. If you have read my memoir, then you know why I was fitted one. I might have to have it replaced later in life as they don't last as long as a valve. I do know that I will probably this year have to have one of the leads replaced as it is making extra noise (my body has always been complicated).

6. My first time having carers. I never thought I'd have them until I was much older. They did help me to recover at home, knowing that I wasn't alone all day.

7. My first time using hospital transport. I didn't even know that it existed until I was transferred to my second and third hospitals, and then when I came home could use it to attend my appointments. I still use it today especially to go to my main appointments at Guy's and St Thomas's hospitals. It involves waiting around for them to come and collect you both at home and at hospital but it is a door to door service.

8. Saying that, the above is another first for me – attending hospital appointments on my own. Before the surgery I always used to go with my mum as I was afraid of getting lost and not knowing what to say to medical staff due to my Asperger's. I now go to all my appointments on my own, something that I am amazed I do. I believe that it comes from no longer having a hole in the heart which made me nervous. So, one good thing did come out of that period of my life.

BTW my memoir 'Endocarditis - My Journey' got a 5 star review from The Book Dragon store, which you can read on their website. It is available to buy there as well as my website, Amazon and other ebook retailers.

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.