Bonjour,
I'm going to write a few blogs reviewing books written about living with M.E. (Myalgic Encephalomyelitis). These books have impressed me and influenced my thinking about how I live with this illness.
The first in this series is a book entitled
'HIGHER MAINTENANCE' by Marianne Granger.
This is what I read on the back cover of the book which intrigued me
' Author Marianne Granger suddenly found herself incapacitated at the age of 46. Devastated and with no cure for her illness in sight, she recounts how she went from victim to empowered as she learned to tame her "dragon" by mastering her emotions, her ego. Follow her journey to a fresh perspective on a life that can bring joy and serenity. Whether you or someone you love is struggling with chronic illness, you will find that raising awareness, forgiving and letting go are just a few of the liberating steps on the road to wellness. This is the path of Higher Maintenance.'
The first thing that struck me on receiving and reading my copy of this book was that it mirrored my story and journey with M.E. I've underlined, ringed and starred many key words and phrases that resonate with me. There are so many that it would be impossible to share them all in this blog. However, I'll share some of the key ones with you.
Marianne was about the same age as me when she became ill and at about the same time.
She writes 'One morning I woke up to find that I could not get out of bed. I was weak as a kitten and my throat was very sore'
On reading her book I discovered many of her experiences were similar to mine
- she thought that she was sick with the flu
- she thought that she was dying
- she pushed herself to go back to work too soon
- she lost everything
- she was told that she had depression
- she became isolated
- she became increasingly sensitive to so many things around her
- she spent a decade of online research
- she searched for tools to and ways to manage her illness
- it became increasingly clear that her life would never be the same
She likens her illness to a dragon and she writes
'I had to welcome the dragon into my life because, perhaps he was there to teach me something'
She found online communities and resources to get answers. She joined a support group and then someone who referred her to an endocrinologist who had taken a special interest in ME/CFS and a lawyer who specialised in Fibromyalgia and ME/CFS disability cases. Like me she went through a battery of tests to exclude the possibility of other illness before concluding that she did in fact suffer from CFS. She was told that about 3% recover from this illness but that there was no cure and too little research. This was in 2005. She also eventually got her disability pension.
She writes 'During that time of uncertainty, I had to find ways of nurturing myself. Once in a while I stopped at a nearby florist and bought myself one flower that I would enjoy for a whole week. On Saturday nights, I set a nice table, lit a candle and sat down with a cheap wine as I dined, listening to my favourite standards. I didn't feel alone or sad. I felt nurtured. I could do this for myself because I was worth it'
'These were my first steps on the path of Higher Maintenance'
She writes about her inner strength, her loneliness, her grieving, her test of faith, the need to ask for help, becoming selfish to survive, learning how to stop feeling sorry for oneself, learning to set boundaries, learning humility and humour, listening to her body, mind and soul and learning how to accept her illness.
She writes about how we can get back control over our life, our health and happiness by various strategies. She writes about tools that can help us reach acceptance and how to live with a chronic illness.
This book is about her personal story, her approaches to higher maintenance, how she manages her illness and what tools she uses to help her. It's full of useful advice and reflections.
It's a positive and inspiring book. I recommend this book to anyone suffering with a chronic illness. I'm sure it will help you like it has helped me.
A bientot
The French Femme
xxx
Great Review. Thank you for sharing this. More & more people with ME/CFS need to see reflections of their experiences in a way that validates their lives
ReplyDeleteThank you for your comment. I think it's important to read and share other people's experience of living with a chronic illness. as it helps us to feel less alone and increases better awareness and understanding.
DeleteI don't know if you're open to reviewing fiction with an ME main character - I wrote it partly with the concept of using fiction to let a reader live another life, something fiction is very good at, to develop empathy (without having to become ill). Taking a reader from sympathy (poor person with a disease!) to deeply feeling what it's like (SIDE EFFECT - not main purpose) to live with the disease, is my secondary aim; the first, as always, is to write something entertaining and compelling in itself.
ReplyDelete