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Living and Coping with Epilepsy, My Way
By Cara Coles
John Hunt Publishing Ltd.Copyright © 2014 Cara Coles
All rights reserved.
This Is Me
Like a lot of people I worked hard and played hard. I worked all the hours I could so that I had money to do all the things I wanted. I thought I was quite happy plodding along with my life, I thought I had my life all mapped out in front of me, but things were about to change.
I was a strong person, someone that could take on anything that life threw at me. I thought I was in control of everything: control to me was good. If I had control of what was going on, nothing could go wrong, but I was soon to find out I was mistaken. There are things in life that are beyond our control.
I was 36 years old, and life was good, a bit of a struggle at times but good, I had control. But it only took a matter of weeks for all this to change and for me to become someone that was:
Fearful – because I didn't know what lay ahead.
Helpless – because I had lost control over my situation and couldn't see any way of regaining it.
Hopeless – because the future looked pretty bleak and I could not see any light on the horizon.
In a matter of a few weeks, my life took a turn I could never have predicted and was turned upside down.
To me routine was everything, I guess getting into a routine makes a busy life easier to juggle; you don't have to think about anything, you just work on auto-pilot. On the morning my life changed for ever, I did the same things I did every morning when I was going to work. I got up, made coffee, put the radio on in the bedroom and put my coffee by the side of the radio. I had turned around to start getting my clothes ready for the day when it happened.
The only way I can describe it is to say that an immense wave of fear swept through my body. The next thing I became conscious of was waking up on the floor: scared, alone, confused, wondering what had just occurred. I got myself back up on my feet and already my mind was working to find a logical reason for what had happened: perhaps I wasn't quite awake, turned too quickly?
I convinced myself that nothing was wrong and carried on with my day as normal. But as the day progressed the pain in my body, every muscle was hurting, became too much. Eventually I had to admit defeat and go home and crawl back into bed.
A few weeks passed and nothing else happened. I decided it must have been a one off event, so I brushed it under the carpet and carried on with life, safe in the belief it wouldn't happen again.
I work in a busy hospital as a registered health care professional and the shifts are often hectic. I had just finished a 12 hour shift and was going on-call. I thought I would just stop and have something to eat before retiring for the night. I remember going into the coffee room and putting my dinner into the microwave. There was another member of staff in the room. We had a brief chat but I had some work to do. I sat down on the chair and turned on the computer. The next thing I knew, I could hear people talking to me, trying to get me to sit back into the chair. I was completely confused and at a loss to understand what had happened. Perhaps, I thought, I had turned too quickly in the chair and, because I had not eaten for a while, I had fainted? From my perspective, that was the only reasonable explanation for finding myself on the floor with no awareness as to how I got there.
Staff were fussing around me, but I couldn't understand why. I had just fainted, that was all. I simply wanted them to leave me alone, there was nothing to worry about and all the fuss was embarrassing. Despite my insistence that I was okay, before I was properly aware of what was going on, I was on a trolley being taken to A&E.
Whilst in A&E some of the department staff where I work called in to see me. "Oh you look better now," they told me. I didn't reply. How could I? I had no idea what had just taken place.
When I saw the doctor he explained that I had experienced a seizure. I tried to explain that I hadn't – I had just fainted. The doctor looked at me and said, "You had a witnessed seizure. Has this happened before?" I explained what had occurred that morning a few weeks ago. The doctor advised me to go and see my GP, which I promised I would. Then I was allowed to go home. I left work feeling somewhat confused. I had suffered a seizure. But how? Why?
It wasn't long before I was sat in front of my GP, who advised me that, because I had now experienced two seizures, my condition was considered problematic and I was not to drive until I had seen the neurologist. He informed me that he would send an urgent request for me to be seen by one.
I went home, went to bed and hid under the duvet. I was scared and confused. I had so many questions; how could I have developed this, what was I going to do? I would lose my driving licence; what about my job? What would I do for a living? But, most importantly, how was I going to cope? There were so many questions running around my head. I don't know how long I cried for but I must have cried myself to sleep.
The next day I went to work and spoke to my boss. Together we decided to remove me off all out of hours work until I had seen the neurologist. I convinced myself this was the first step of losing my job. I had worked so hard to get to where I was today; I left school with no qualifications and joined the royal navy for a brief time. After working in different nursing homes I began working in a busy department. At the age of 29, I finally got a break and was accepted onto a training course. Two years and a lot of hard work later, I became a qualified practitioner. The hard work had continued and two months before the first seizure I had become a senior member of staff.
The job I do is one I had dreamt about for years but had never thought it would be possible. When I left school with nothing, I honestly thought that my working life would consist of menial jobs without any prospect of changing that. However, with hard work I had proved myself wrong and now I feared I was going to lose it all.
Before I had even begun to come to terms with things, I found myself sat in front of the neurologist. There is a lot of what he said to me that I don't remember. I do remember him explaining that it sounded like I was having tonic-clonic seizures. He wanted me to have tests before he started me on any medications, and I would have to surrender my driving licence to the DVLA. He could have said anything after that, but all I could focus on was that I wouldn't be able to drive any more.
I went home in shock. I had just been diagnosed with epilepsy without being given any information about what to expect or how to deal with it. For the first time in my life I felt completely alone. I had tons of questions and no one to ask them of.
I wrote the hardest letter I had ever had to write in my life, a letter to the DVLA, explaining why I was sending my driving licence to them. I'm surprised there weren't tear stains on the paper. As I wrote I felt that my life, all that I knew, everything I was, was falling apart. I posted the letter with no idea when, or if, I would ever see my driving licence again.
My head was constantly full of questions; what was causing this, how long would it go on for? Even more importantly, when would it happen next? The questions kept coming but not the answers. So I turned to the internet and most of the information I have gained is from there. I discovered a great website called, 'Epilepsy Action', as well as some other excellent sites. As I began researching, I was shocked by how little I understood about epilepsy, and in time I started to find out how little knowledge other people had. I began to realize there was a need to make people more aware of the condition. My own experiences had left me scared and confused, and although I had wonderful friends and family, I felt so alone without anyone to answer my questions.
I have made many mistakes in my life, but not talking to people about how I felt and how I was coping, or rather, not coping, during this time was one big mistake. I felt that if I could hide my real feelings about it all from my family and friends, they wouldn't see how much I was hurting, how scared I was, how much I had lost control of my life.
Then the tests started. I remember lying in the MRI scanner, trying to keep still. "Don't cry," I told myself. "Don't cry." I could feel the tears rolling down my cheeks. What if there was something in my brain causing this? What if there was nothing? Surely someone of 36 doesn't just develop epilepsy? What if there was something wrong with my brain? The scan was clear and so were all the other tests.
It was such a relief. Still in a state of shock over it all, I thought that was it. My scan was clear, no more seizures. By the time I saw the neurologist again I had already had another seizure and so I started medication.
I tried to deal with life as best as I could, but I think I was just going through the motions. Just plodding along, trying to keep going, pretending everything was okay. I put on a mask, a brave face, so that nobody could see what was going on inside me.
The next major hurdle I had to face was what to do with my car. It had been sat in the car park for a while now. With no driving licence, there was only one thing I could do and that was to sell it. As I handed the keys and documents over to the new owner, and watched them drive away, I watched my freedom drive away with them. I never thought that this would happen to me. I can't even start to explain how much it hurt.
I bought myself a Medic-alert bracelet. I appreciated they saved people lives but I hated wearing it. It felt as if I was being labelled. Looking back, I think it was because I still didn't believe it. My friends and family were brilliant, and work was amazing, but I still felt like my life was falling apart.
I decided to put a face on, show the world I could deal with this. But it was all a front, deep down I couldn't get past the idea that my life was falling apart. Even though I had all these people giving me support, I felt so alone, no one to talk to that understood. How was I going to deal with this? What caused it? Was it ever going to stop? Not knowing what was going to happen was hard for me to deal with.
I found myself giving up so much, all because I had epilepsy: my driving licence, my independence. I gave up so many things that I enjoyed doing. It seemed as if everything I looked at, all I could see was, 'I cannot do that, what if I have a seizure'. The fear of having a seizure was taking over my whole life.
So this is me. I have epilepsy, and, back then, at that moment in time, my life was crashing down around me and I was powerless to stop it.CHAPTER 2
I have an interest in the paranormal, mainly in the subject of ghosts. I enjoy the research side of things, and trying to understand why some people see and hear things that most of us are completely unaware of, and that some would deny exist. This was one of the many things I had given up due to the epilepsy, but I needed to get my teeth into something, to take my mind of what was happening.
One day I found myself reading a piece in a magazine about the law of attraction. The thought that I could have anything I wanted was tantalizing, now more than ever. This, I thought, is what I need to get my teeth into. I couldn't wait to know more, I wanted to know if it was really possible. As I delved into it further, I began to understand that everything is made of energy, even our thoughts have energy. What we think, we can create. What we feel, we attract and what we imagine, we will become.
From that first article I bought a book, and then another. Before long I had quite a collection. I turned the idea that I could really have anything I wanted over and over in my mind. One part of me just didn't believe it; surely, it couldn't be true? How could someone like me have whatever they wanted? The more I read though, the more confused I got. One book would tell me one thing, and then another would tell me to do it differently. Other books were telling me what I was doing was wrong and that I should be using a different method.
I have no idea how much I spent on books on this subject, yet still in the back of my mind I couldn't believe that I could have all I wanted. I was reading the books and the examples of people getting what they wanted and these things seemed to just happen. But surely they had to do something towards fulfilling their wish; things don't just fall into place so you can get everything you want. Surely we have to work towards things, that's what I was always told. You worked hard to get what you want.
Most of the examples showed what people wished for and the end result, but not the in between bits. To me the in between bits are important. A bald statement of what people wanted and wished for and an equally bald statement that they got their wish wasn't enough for me. I needed to know if they did anything to help them achieve their wish or if they simply put the wish out there, sat back and it appeared. So many questions, and I had so little proof that it worked, yet all these people were saying it did. I just needed to see one person's account of how it worked for them, to truly believe.
I had been so busy researching the law of attraction that, at some point, I had stopped questioning why I got epilepsy, and in fact, I had stopped focusing on what I had lost. So there was only one thing for me to do and that was to put the law of attraction to the test.
This book is my journey, living with epilepsy, the highs as well as the lows. How I used the law of attraction to help me overcome and deal with my illness. In this book I share the situations I went through and what I discovered to help me deal with it all in the best way. You may have just been diagnosed or you may have had epilepsy for a while. You may be reading this because a loved one has been diagnosed. You may even have been diagnosed with another illness. I hope, whatever the circumstances are that bring you here, that you all find this book to be helpful.CHAPTER 3
Accepting Your Illness
It wasn't until later on in the project that I learnt to accept that I had epilepsy. Perhaps it was something I should have addressed earlier than I did. You have to accept that you have this, or any other illness. Although you can't accept it overnight, you will have to accept that you will have to make changes to your life and this can be hard. You may need to allow yourself time to grieve for your past life. I grieved for my driving licence, my loss of independence; I grieved because I was diagnosed with epilepsy.
There are so many different types of epilepsy that I can't do the whole subject justice here. If you want to learn more, please look at the Epilepsy Action website. It's full of wonderful information.
There are so many things that have to be taken into account that people often don't realize, like possibly working out financial issues, managing medication, transport issues. Someone who suffers from epilepsy has to learn to look at things differently and to think about their safety. At the end of a working day, I used to love having a bath; it was a great way to relax. Once the seizures started, I felt it was unsafe to have a bath when I was alone in the house; there was always the risk that I could have a seizure in the bath. So instead, I would make my husband stand outside the bathroom door and keep talking: not very relaxing, so showers from then on.
Look at sharp edges on furniture, something I didn't think about until I had a seizure and hit my head against a bedside cabinet. I think I failed to consider my safety because I hadn't yet accepted that I had epilepsy. You know better than anyone about your seizures, so please just have a look around your home and see if there are changes you need to make to keep you safe. You can do whatever you want to do with your life, but you need to make sure you are safe should you have a seizure.
There may be occasions when you experience loneliness, embarrassment and even fear. It takes time to adjust and it takes longer to accept. But eventually, if you want to achieve your dreams, you do need to accept your illness. You have to come to terms with your limitations and learn how to accommodate them, developing new skills and ways to help you to cope with your illness.
Excerpted from Living and Coping with Epilepsy, My Way by Cara Coles. Copyright © 2014 Cara Coles. Excerpted by permission of John Hunt Publishing Ltd..
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
This Is Me 1
What Changed 7
Accepting Your Illness 9
The Project 12
My Wishes 14
Dream Big 17
What We Attract Into Our Lives 21
Let Your Imagination Run Wild 29
Should We Tell The World About Our Wishes? 34
Who We Are 36
Don't Listen 40
Out With The Old And In With The New 43
Give Thanks 46
Take Time Out To Relax 50
Say It As You Believe 54
Things Start To Change 57
Life Is Now 59
Random Acts Of Kindness 68
The Project To Date 79
Negative Moods 82
How Much Work Do We Do? 91
Allow Time 95
Go With The Flow 97
Never Ever Say Never 102
Final Thoughts 106
Most Helpful Customer Reviews
An inspirational true life story which illustrates how Cara Coles comes to terms with her frightening diagnosis of epilepsy at the age of 36. She shares her vulnerability and the isolating fear that can take control with a serious diagnosis such as this. For someone who must deal with the effects of the unpredictability of epilepsy and the toll it takes on the body and mind, the author is sensitive to how she might be perceived by others. She goes on to explain "When my memory problem occurs and I get caught in midsentence, I can see the other person’s face getting annoyed, shortly followed by a sigh. This doesn’t help me because I find myself getting upset by it, then trying to explain that I have a memory problem because I have epilepsy. Then the person may feel sorry for me and the first conversation is completely forgotten about. I don’t want them to feel sorry for me; I just want them to understand." But what this book is really about is how her illness ultimately created an opportunity for deeper meaning and understanding of her life. As Cara acknowledges "It gave me time to really think about what I truly want out of life and that wasn’t where I thought I was heading." Woven together are two elements that we all must deal with; that which we cannot control and conversely, that which is within our power to mirror in our lives. Cara wants us to learn from her experience that while we might not achieve all of our dreams in a single day, the obstacles we face may very well be the thing that teaches us just how to get there. A splendid read written with sensitivity and humor. Does Cara get what she's hoping for? You'll just have to read the book to find out.