How Would You Cope With This?

Copyright © 2023 by Wayne Ramsay

ISBN: 978-1-77883-049-5 (Paperback)

978-1-77883-050-1 (E-book)

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case brief quotations embodied in critical reviews and other noncommercial uses permitted by copyright law.

The views expressed in this book are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

BookSide Press

877-741-8091

www.booksidepress.com

[email protected]

INTRODUCTION

HELLO AND WELCOME

I would like to introduce myself. My name is Wayne Ramsay. I was born in Melbourne, Australia in 1946. It is October 2022; we just got over winter and are now enjoying spring, hoping for a very nice summer. I thought it would be a good idea to share with you what happens to your body when you contract inclusion body myositis (IBM). The interesting part about writing this book is that I cannot type very well as my hands are very stiff. I cannot bend my fingers due to IBM. I’m able to type with one finger and a thumb, so it takes a while to do anything. I found a programme on my computer called dictate. It comes free with the Windows 365 package and it allows me to turn voice into text; my voice is very husky, and the computer sometimes finds it hard to understand. I am sure it thinks I am Chinese. I am forever going back, correcting mistakes that the computer makes. Also, I am not computer-savvy; one must be very careful as to what keys are pressed so that I don’t delete any dialogue. One annoying part about this programme is when somebody else walks into the room and talks, the computer picks up everything that person has said and adds it to the text. What a bloody nuisance.

I must then go back and delete the whole lot. Someone was watching Spiderman the other day and I ended up with Spiderman dialogue in the text so really, the only place to write this book is somewhere peaceful and quiet. This is my second book. The first one was named Roscoe, the Gold-plated Dog, the story of my golden retriever.

I joined the Royal Australian Navy in 1963. I was only in for four years because I was a sleepwalker. Unfortunately, the two do not mix, and I was discharged in 1967. I was a cook on the destroyer HMAS Duchess during my short stint in the Navy. I was also stationed at HMAS Cerberus, the major land-based training facility in Australia. It is situated at Crib Point in Victoria, about 70 kilometres out of Melbourne. While in the Navy, I met a lovely girl by the name of Jeanette. I married her in 1968. While writing this book, we have celebrated our 54th wedding anniversary. We have two children and four grandchildren. My daughter, Jackie, who is 52, had two girls named Kayla and Bree Anna. My son, Shane, who is 50, had two boys, Clayton and Curtis. We had a big fallout with our daughter in 2021, and we no longer talk to Jackie who also turned the girls against us. They don’t want anything to do with us. I look at it this way. It is her loss if she thinks I’m going to crawl up to her; she has got another thing coming. In simple terms, she has stated that she had a shit childhood and missed out on a lot. My son, on the other hand, said his childhood was great and did not miss out on anything. One is right, one is wrong?

Nothing is too much trouble for my son; he is always there for us (thank God) as we needed somebody to help us get through the last few years which have certainly tested us out with the way we are now. Anyway, we will get back to this subject later. Sit back and enjoy.

CHAPTER ONE

My journey with myositis started around 2018. That is when I first noticed a change in my left hand. I was finding it very hard to make a fist. The fingers just would not bend, I thought it could have been arthritis. My doctor, whose name is Peter, had no real idea; he had never come across symptoms like that before. He said he would investigate it. After many tests and numerous doctor’s appointments, the official diagnosis came in January 2019—IBM. Inclusion body myositis. Never heard of it? Very few people have. It is one of those diseases that slips through the cracks. With all due respect, I have never come across anybody except a neurologist who knows what IBM is. Some doctors have heard of IBM but are unaware of what it does to the body. I found that most nurses are also in the same boat—never heard of it.

The next paragraph has been taken from the myositis association of Australia newsletter explaining what IBM is. Inclusion body myositis is a condition that causes muscles to become thin and weak. Symptoms usually start in middle to late life and is the most common muscle disease diagnosed after the age of 50. Nevertheless, it is still considered rare, with only between three to four people out of every 100,000 people over 50 years old having this condition.

People are starting to be aware of motor neuron disease (MND) in Australia. IBM is a cousin to MND, mainly recognized because of Neal Danaher, the ex-AFL Melbourne football club coach. He came down with the disease seven years ago. He’s very lucky as most people who get MND don’t last more than three years; he certainly has got a slow version. He has come across as a brave gutsy person who seems to have accepted the cards he has been dealt; he just goes along and accepts everything that comes his way. I certainly admire the way he goes about it and the way he presents himself.

People have started to take notice and not just football fans because of the big freeze slide every year on the Queen’s Birthday holiday at the Melbourne Cricket Ground. Let me explain what happens: this event is held on one of the largest sporting days on the AFL calendar. It is the annual game between Melbourne Football Club and the Collingwood Football Club. What they do is install a slide, probably 2 metres wide by 8 metres long. At the bottom is a pit filled with crushed ice. The whole idea is that several celebrities are chosen to slide down and hopefully raise funds for the cause; each celebrity dresses up as anyone they like. This event takes place before the main game starts. The people who organise this event also sell woollen beanies at $25 each; last year they sold over 50,000. This event alone has raised awareness on MND. I would imagine every person at the ground, usually around 80,000 people, would know what MND was. Prior to this, no one knew nothing.

Since the big freeze has started, they have raised close to $30 million to help fight this horrid disease and even with all that money pumped into the project, it does not mean success. Unfortunately, no news of anything let alone a cure has arisen at this stage. I only hope they can find a cure for this one as it would relate very easily to IBM.

IBM is an unknown cousin of MND. It is supposed to work a lot slower and only affects the muscles in the hand’s arms and legs. Unfortunately, MND affects more parts of the body including the lungs and the voice box. My cousin, Murray Swinton, was diagnosed with MND in January 2021. Unfortunately, he passed away in October 2021 at the age of 58. Talk about fast. I suppose I can be grateful that I do not have MND.

Let’s look at my life prior to 2018 before IBM and go through some of the sicknesses and illnesses that I’ve encountered in my travels, prior to myositis. Let me explain what my personal physical shape is. I am 76 years of age, five feet and 10 inches tall (178 cm), and weigh around 80 kilos. I have a very light frame and I have a moustache, otherwise clean-cut. I drink beer socially and enjoy a stubby or two of beer at night with dinner. I smoked cigarettes for 40 odd years and gave up in 2010.

My main occupation has been a salesman selling cigarettes to the tobacconists and what they called in those days fancy goods to gift shops and anyone that sold our merchandise. I have worked for many wholesalers, selling anything from cigarette lighters, batteries, fancy goods, lolly brands such as Wizz Fizz and sherbet cones. My largest problem as a salesperson was, I called a spade a spade and told people the way it was. Often it did not go over too well with the boss. I found myself out of a job on a couple of occasions because of my big mouth.

This eventually led to me working for myself, and the last job I had was a wholesaler, selling batteries to licenced post offices. I did this for over 10 years before selling the business and retiring.

Let’s go back 25 years to 1993. My first angina attack came at the ripe old age of 47 in October 1993 while grouting a tile floor. I can remember how long ago it was because we were going to renew our vows and remarry on our 25th wedding anniversary which was only three days away from the day the attack occurred. Whilst tiling on this evening, I experienced some mild chest pain but being a normal male, I naturally ignored it and continued tiling. I would then have a break, light up a smoke, and have a beer; the pain would subside then back to it. I seemed to accept the pain at the same time not knowing or realizing that this could be heart-related. It did not seem to bother my typical macho male attitude. I’ll be right mate, only a little hiccup. After a couple of attacks, I gave it away and went to bed. I didn’t tell Jeanette at the time, as I did not want to worry her. Also, she was not in the room at the time of the attacks and could not see my face or my reaction. Had she been in the room she would have called an ambulance for sure. All I wanted to do was finish the grouting.

Next morning, I went to clean up some of the grout and immediately had an attack which was twice as strong as I had the night before. This one really floored me. It stopped me in my tracks. I went totally white, collapsed into a chair which in turn caused us to call in the local GP. Even if we had called an ambulance we ended up with the same result. Jeanette and I were sent to Frankston Hospital emergency department. They did all the appropriate tests relating to the heart and confirmed that I had an angina attack. Frankston hospital did not have the facilities or the equipment to do angioplasties. They had to send any patient to another major hospital. They kept me in the hospital for around two weeks, while waiting for an opening at the Royal Melbourne Hospital. Imagine being in the ward, feeling pretty good as it felt there was nothing wrong with me. The treatment they gave me for my condition to keep any attacks at bay was tablets plus a daily Transiter-Nitro slow-release patch which when applied to the body releases a limited amount of glyceryl trinitrate, which causes the body to open the arteries and allow blood to travel through freely to the heart. I was told the wait could be as long as six weeks; the amount of people in hospitals around Melbourne waiting for this procedure is in the dozens. I will just have to wait for my turn. My turn finally came after a wait of just 13 days. What a waste of resources. Why couldn’t they have sent me home and as soon as a vacancy came up, call me in, and send me into the royal Melbourne instead of staying in hospital, twiddling my bloody thumbs? It was a pain in the arse, sitting around waiting for an opening at Royal Melbourne where they would perform the angiogram.

I would like the reader to imagine himself or herself. Plant in your mind that you are squatting down or actually on your knees ready to grout the floor. You have a grouting tool in your hand, you put some grout on the floor, and then you use the tool to move backwards and forwards, making sure the grout goes into the gaps between the tiles. All of a sudden, you get pain in the chest. The pain is like having a clamp opening and closing on your chest. The pain takes the wind out of your sails and stops you in your tracks. You find it very hard to breathe as the clamp continues to take your breath away. You struggle to get up, but you do and you go and sit down to try and catch your breath, hoping the pain will subside. I hope that this has given you an idea of what it was like to have an angina attack or a heart attack.

I was driven to the Royal Melbourne Hospital by a private nurse as she was on leave and heading that way anyway. She went in with me and made sure that I went to the right department. At that time, I had a loose tooth. The nurse said that if the tooth remained loose, they could not attempt to do any heart operation as it could cause a major infection. After that news, I kept moving my tooth with my finger and eventually it came out. The doctors were none the wiser so the angioplasty went ahead. The operation took an hour. The doctors inserted two stents in my arteries which were up to 80% blocked; they were the first of many to come. A private ambulance transferred me back to Frankston Hospital where I stayed for two more days, then at last, I was given the all clear and finally went home—certainly an experience which you don’t want to repeat. Since my experience at Frankston Hospital, they now have the facility to treat patients that need to have angiograms and angioplasty. They do not do any of the bypass surgeries. They are only done at the very large major hospitals. Very handy saves going into the larger hospitals like the Royal Melbourne and waiting around for two weeks, wasting valuable hospital funds which could be used for something more important.

I have spoken about it but never explained what happens when you have an angiogram. This procedure is done under local anaesthetic. In my case they went into the body through the inside of the thigh. This is where your main artery is situated. If you cut there, you will bleed out within minutes. Naturally the main artery leads to the heart. The doctors place a surgical wire [catheter] into the groin, which is hollow and has little hooks. The hooks enable the doctor to grab hold of a stent if needed to be inserted and also are capable of clearing any build-up of foreign matter which may be blocking the artery by pushing it to one side which will enable the blood to continue through. The doctors guide the wire through the arteries up to the part which is blocked. Prior to the wire being placed in the body, a dye is injected into the artery so that any blockages can be seen. All this is relayed onto a TV screen in the form of X-rays so the doctors can see your heart in action.

Angioplasty is the procedure used to unblock an artery. It is called balloon angioplasty and if necessary, stenting is where a metal sleeve is used to open the blockage