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.