Longing to Live: Journey with Chronic Fatigue Syndrome and Fibromyalgia

Cover Photography by Liam Carroll,

Darwin, 2012

Longing to Live

Journey with

Chronic Fatigue Syndrome

and

Fibromyalgia

Margaret T. Lambert

Darwin, Australia

2012

Testimonials

Margaret Lambert, in Longing to Live, does a superb job of illuminating the physical, emotional, psychological and spiritual facets and challenges faced by individuals struggling to learn how to live with a chronic illness. This is a book I would recommend to family, friends, counselors and clergy to help them to see the tremendous daily struggle it often is for one desperately "Longing to Live through the debilitating invisible" diseases of Chronic Fatigue and Fibromyalgia (CFS/FM). As a fellow sufferer of CFS/FM, Longing to Live provided much needed validation and encouragement in supporting me through my own journey of debilitation, isolation and depression. I closed the last pages with a greater sense of peace and hope for recovery, with many reflections to encourage me to not give up when the path is particularly rocky. Thank you Margaret for sharing with courage and compassion, for self and others, an honest and real look into the life of someone living with CFS/FM.

Susan R Greenough

Psychotherapist

Boise, Idaho, USA

This book is a wonderful companion to have, for those of us on the journey with Chronic Fatigue and Fibromyalgia. Marg tells her story with great warmth and wisdom. It is easy to read and many of her stories I was able to relate to immediately. I felt instantly better knowing that I wasn′t alone! Marg also provides a detailed account of the many treatments that she has tried in order to alleviate her pain and suffering. I found this a most useful tool as I was able to compare her experiences with those treatments that I had tried, and also find out what other possible treatments are out there. Through this book I have been introduced to the marvellous technique of EFT. I have found the benefits to be amazing. I would highly recommend this book to any sufferer or person who wishes to understand the suffering of someone with Chronic Fatigue or Fibromyalgia.

Gillian Dadswell

Director

Two Way Communication

Darwin, Australia

Longing to Live

Copyright © 2012 Margaret T. Lambert

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior written permission of the publisher.

Smashwords Edition

The information, views, opinions and visuals expressed in this publication are solely those of the author(s) and do not reflect those of the publisher. The publisher disclaims any liabilities or responsibilities whatsoever for any damages, libel or liabilities arising directly or indirectly from the contents of this publication.

A copy of this publication can be found in the National Library of Australia.

ISBN:  978-1-742843-00-1 (pbk.)

Published by Book Pal

www.bookpal.com.au

This book is dedicated to all sufferers of

Chronic Fatigue Syndrome,

Fibromyalgia and other chronic illnesses.

Through the journey of another

May you find hope in your suffering

And the will to persevere,

Showering kindness upon yourselves.

O snail

Climb Mount Fuji,

But slowly, slowly!

Kobayashi Issa

Acknowledgement

Sincere thanks to:

All those who have encouraged me to write my story;

Gillian Dadswell and Maureen Roberts, for critiquing my writing;

My family, for their ongoing support and patience over the course of my illness;

And Elisa, for love and inspiration, beyond.

Contents

Acknowledgement

Foreword

Introduction

Part I: The Journey

Chapter One: The years before CFS

Chapter Two: The year of onset of CFS

Chapter Three: The ongoing years

Chapter Four: Towards Hope

Chapter Five: Just when I thought…

Part II: Understanding Chronic Fatigue Syndrome and Fibromyalgia

Chapter Six: Explanation of CFS/FM

Terminology

Diagnosis

Cause, Onset, Course, Prevalence

Chapter Seven: Symptoms and Treatments

Chapter Eight: Additional Strategies

Part III: Backhanded Gifts

Chapter Nine: Challenge and Change

References

Appendices

Appendix 1: Support Groups

Appendix 2: Inspirational Resources

Appendix 3: Emotional Freedom Techniques (EFT): Short version

Appendix 4: Dr Petrovic’s Protocol

A. Questionnaire

B.  Dietary Requirements

C. Apple Cider Vinegar

D. Steam Inhalations

Foreword

Dr Emma M Kennedy, BMBS MFM FRACGP

Longing to Live is a sensitive account of a journey from a ‘doing’ person to a ‘being’ person. The author describes how she has grown from a person finding fulfilment through her life’s achievements, to someone finding deeper success through her enjoyment of being.

Eloquently and honestly she tells of the dramatic changes in her life. She grieves the loss of her earlier robustness when she could achieve anything she desired, and then her lonely, rocky and unrelenting journey with Chronic Fatigue Syndrome, or Fibromyalgia. In describing her many treatments she demonstrates that holistic management is needed to overcome the crisis of being unwell in body, mind and spirit.

Stories are unique to the story teller and shaped by experience. Margaret’s story reflects both her experience of suffering and her professional perspective as a psychologist. She elaborates on the desperation of relapses associated with anxiety and depression. These periods are bleak. She learns the wisdom of listening to her symptoms and of patience.

Storytelling is often therapeutic. We can see something new each time we tell our story. Listeners hear the story in the context of their own life experience and will reflect accordingly. We can enhance our understanding of our ill health by talking with health professionals.

A general practitioner sheds light on the story through the framework of medicine. The sufferer’s own story can be understood differently through the doctor’s diagnosis. My enthusiasm for teaching medicine comes from the complexity of the unknown. The doctor’s discipline combines the knowledge to be found in the patient’s story with the evidence and proof of science. The doctor must relate this to the complexity of the human person. The diagnosis concerns not only physical matter, but also matters of the mind and spirit, unique relationships, emotions and experiences.

This book offers a perspective on chronic illness that is gentle, thoughtful and hopeful. It will interest Chronic Fatigue Syndrome and Fibromyalgia sufferers and their carers. For health professionals early or later on their professional journey, Longing to Live offers insight into the suffering of chronic illness and the importance of autonomy for sufferers in contributing to their healing.

This personal story stays with us. Feelings linger and penetrate our everyday consciousness. Margaret’s story is poignant, offering hope throughout the journey to acceptance.

Introduction

Living with a chronic illness is life changing, and if you have picked up this book to read, you are probably suffering with fatigue and pain, or you care about someone who is chronically affected in this way, and you have a desire to understand more about your loved one’s condition.

This book shares the inside story of the journey with Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM), and the constant Longing to Live with vitality and purpose. It is hoped that through sharing my story, with its struggles and insights, others may feel empowered in their own journey of chronic illness. This is not a book filled with detailed medical explanation about CFS and FM: that is best left to the medical experts and researchers in the field, and many excellent professional resources are provided herein. The explanations of the conditions CFS/FM provided in this book are presented for understanding by lay people, patients like myself and compassionate carers and friends who wish to comprehend the personal and social impact of the condition, and possible treatments. Through the personal journey, Longing to Live presents an authentic story of living with a debilitative illness. Though the battles are many, there are also considerable blessings if we remain open to them, and it is in honouring the complete story of our lives that we become centred and real.

It was the morning of Christmas Day, 1992 that I could not get out of bed. I was 37 years old and my body had collapsed. A couple of months later, after a multitude of tests, I was diagnosed with a condition that I had never heard of, Chronic Fatigue Syndrome (CFS). As the years rolled on and I researched more and more about this fatigue and pain-based illness that had taken its toll on my life, I learned another term, Fibromyalgia (FM). I learned that this term was generally interwoven with articles on CFS and I discovered that the two conditions are often referred to as the same illness. Whilst there may be varying medical opinion on the relationship between the two conditions, it is generally agreed that symptoms are very similar in both CFS and FM, with the primary symptom of CFS being overwhelming fatigue, and the primary symptoms of FM being body aches and pain. It may be however, that many patients switch between these most prominent symptoms on any particular day, and as such, identify with the combined set of symptoms for both CFS and FM (CFS/FM).

Almost twenty years after my diagnosis, there is still no cure for CFS/FM and there is no universal treatment. It seems that each person must discover the treatment regimes that alleviate their symptoms and assist them to manage living with chronic illness and significant limitation. It is largely through the journeys of others that we learn a variety of methods for nurturing ourselves in body, mind and spirit. I have gained so much through the stories of others, in the course of my work, among my friends and through contacts forged as a result of personal research and modern social networking interactions. As a result of others sharing their personal experiences of hardship and searching, my eyes have been opened to healing methods and techniques that I otherwise would never have considered. The many stories of resilience and courage in persisting with the quest for better health, engender both inspiration and hope for myself and others who live with CFS/FM. I pay tribute to these people and in turn, I pass on my own story, with its search and discovery of an array of treatments and self-care methods that have assisted me in living with chronic fatigue and pain. Longing to Live is presented not only as my own story but with the acknowledgement and gratitude of the many others who have touched my life and given rise to the collective wisdom within.

The views presented in this book are my own unless otherwise acknowledged, with personal understandings and insights gained from my perspectives as a person living with CFS/FM, and as a practising Psychologist working with others. To those of you who continue to search for relief from symptoms and are trying to understand how to live with CFS/FM and make sense of your illness, I hope you will gain some benefit from this book, that you will feel empowered in facing the reality of your illness, and feel affirmed that you are not crazy, that it is not all in your head, a figment of your imagination, or indicative that you are lazy and disinterested in life. My hope is that you will continue to explore treatments and methods that heal and nurture your body and spirit, and draw people into your life who believe in you, encourage you and can just be with you.

Margaret T. Lambert

Part I

The Journey

Chapter One

The years before CFS

Things won are done;

Joy’s soul lies in the doing.

- Shakespeare

The decade before the onset of Chronic Fatigue Syndrome (CFS) were wonderful years for me, filled with adventure, raising a family and career development. With my husband Garry, I was living and working in various remote locations in the Northern Territory (N.T.), Australia. We had married and come to the Territory at the end of 1976, our first teaching appointment being to an Aboriginal community called Djembere (now Jilkminggan), located on the banks of the Roper River, within the boundaries of Elsey Station.1 More commonly known as Duck Creek, this is the land of the Mungarai tribe, and of the Never Never, the land of legendary acclaim from Jeannie Gunn’s autobiograhpy, We of the Never Never.2 Both Garry and I were delighted to be associated with this area, its people and its history, and we spent five years living in the town of Mataranka and working at Djembere, 40 kilometres away. Our school consisted of two large caravans, known as silver bullets and a single bough shelter.3 The silver bullets were the classrooms for the primary and post-primary students, and the bough shelter was used as a pre-school in the morning and as a cooler classroom for all students in the heat of the afternoon, as there was no cooling in the caravans.

The leader of the Mungarai, and our Teaching Assistant, was Jessie Galunya (Roberts). Jessie ‘adopted’ me as her daughter and Garry as her son-in-law, giving me the ‘skin’ name, Namitja, and Garry, Jangila. Our adoption then placed all our family members in relationship with the Mungarai people in accordance with their kinship system.4 In 1981, our final year at Djembere, our students, along with other members of the local community, became film stars with the making of the film We of the Never Never, based on Jeannie Gunn’s autobiography. These people were the descendants of the indigenous inhabitants of Elsey Station described by Jeannie Gunn in her book. During the making of the film the school became a mobile entity, as it followed the filming locations around the local area so that the young cast would be available when required. Schooling suffered only marginal interruption as