Like many of those with M.E I struggle to 'read' books cover to cover. Problems range from being unable to physically hold the book open, to being unable to see the page and take in what I am reading. The last book I tackled, took me months to finish....so with a tonne of downtime to fill, and the need for mental escape, I joined the CALIBRE LIBRARY. This library was originally set up for the visually impaired but its' remit also includes anyone who is unable to read in the traditional way due to disability or illness. If this is you, and you live in the UK check them out.
The books below are part of our 'Swiss Army Knife' that helps with all kinds of quandries. These are the books that come out when Mr Elephant or myself are feeling a bit stuck... or overwhelmed...or just peed off! N.B: Some of my choices may also be available from audible, but apart from 'Chocolate...' and 'Waking...' they do not need to be read cover to cover.
Practical Help.
MANAGING CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA By Bruce Campbell, Phd.
Just been diagnosed? Wondering if you have ME/Fibro? Have to fill in a benefits form and not sure how to describe your symptoms? Confused about pacing?
If you nodded wearily at any of the above, then this is the book for you. It is packed with basic nuts and bolts info- what is ME, how to self- manage, and how to manage your emotions.
(Personally I don't use the pacing section of the book, but I do keep health records as suggested, which are invaluable.)
There are a lot of good things about this book including the ( many) semi-detached symptoms and conditions resulting from ME, and practical tips on how to maintain the health of your sleeping, eating and relationships.
This is written in short, clear sections and is easy to use as a reference book. The associated website contains many informative articles: http://www.cfsselfhelp.org/library
CHRONIC FATIGUE SYNDROME/ME- Support For Family And Friends. By Elizabeth Turp.
Yup, this is the book to give your family and friends, who are wondering why you don't just get off the bed and do more. This not only explains in clear language what this illness is, but also gives your loved ones ways to support you. This has been used by great success at the Elephant House!!
This is a long read and the type is small, so maybe better to give to the 'Wellies' ( well-folk), in your life
First Hand Accounts/Emotional Support.
CHOCOLATE AND VICODIN- MY QUEST FOR RELIEF FROM THE HEADACHE THAT WOULDN'T GO AWAY.
By Jennette Fulda.
This is my 'spoonie go-to', if I need a good laugh, and to feel I am not alone in this New Normal existence. Jennette Fulda woke up one day with the headache from hell, and this is the story of how she tries to find out what the birdsong is going on ( ?!), and how to cure it.
From time to time, I have read one of those inspiring books, a sort of 'triumph over tragedy' memoir. It usually leaves me feeling depressed and inadequate. This is not that book! Fulda writes as if she is lying on your couch, and you are gossiping and snacking- and she is good company!
For those of us who just want to be able to sit on the loo, or make a sandwich without pain- this is for you. Dip in at any point and you can be sure of cheering yourself up.
This is hilarious and I recognised so many of my own experiences with Doctors ( and their waiting rooms), and the brick walls I have hit over the years. Those readers from the U.S will appreciate her labyrinthine attempts to deal with Health Insurance companies.
SPOILER ALERT: Chocolate and Vicodin has a happy ending....but possibly not the one you might be expecting.
A breezy humorous account of unexpectedly finding yourself living with chronic pain. Check out her website:https://www.jennettefulda.com/
THE AMAZING TECHNICOLOUR PYJAMA THERAPY By Emily Ackerman.
I should warn you that Ackerman is a Christian, and has taken the story of Joseph ( yes, he of the Technicoloured Dreamcoat and the jealous brothers), and used it to illustrate the many trials of years of being sick. She also tackles that thorny question : 'Why hasn't God healed me?!!!' and opens up a new vision of how we can still experience wholeness even when we are not cured.
She was a Dr in a previous life ( before becoming disabled by years of ME), and in this book she covers so many subjects in such a fresh way.
Chapter titles include: HAND TO HAND COMBAT, OUCH! HANDLING EMOTIONS, SINGLE AND SICK, LOOKING AT LOSS, FRIENDS IN THE STORM...and the cartoons are hilariously on point.!
It's easy to read and each chapter is divided into small chunks- ME friendly!!
HOW TO BE SICK- A Buddhist Inspired Guide For The Chronically Ill And Their Caregivers By Toni Bernhard.
Chapter 2 of this account is called: STAYING SICK: HOW CAN THIS BE HAPPENING TO ME?...which really says it all. Toni Bernhard was on a trip to Paris when she got sick ( with what she and her husband assumed was flu), then never recovered. Back home she struggled, and eventually had to give up her job as a Law Professor, and adapt to a sedentary life she hadn't planned on.
As a very experienced meditator and Buddhist, Bernhard, finding herself too sick to meditate, found the principles of Buddhism ( impermanence, acceptance, curiosity, non-attachment etc), were really helpful tools as she continued to grieve for her old life, and time she was unable to enjoy with family.
I avoided this book for a long time...and of course...DOH!... it is really wonderful!! Her writing is fresh and unpretentious, and if you are chronically ill, you will recognise many of the situations and frustrations. It will definitely appeal to you whatever your faith or if you have no faith...and it will be helpful.
Small type and big paragraphs, so one to savour over time and read bits on good days. Check out her website:http://www.tonibernhard.com/
WAKING- A MEMOIR OF TRAUMA AND TRANSCENDENCE By Matthew Sanford.
The books below are part of our 'Swiss Army Knife' that helps with all kinds of quandries. These are the books that come out when Mr Elephant or myself are feeling a bit stuck... or overwhelmed...or just peed off! N.B: Some of my choices may also be available from audible, but apart from 'Chocolate...' and 'Waking...' they do not need to be read cover to cover.
Practical Help.
MANAGING CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA By Bruce Campbell, Phd.
If you nodded wearily at any of the above, then this is the book for you. It is packed with basic nuts and bolts info- what is ME, how to self- manage, and how to manage your emotions.
(Personally I don't use the pacing section of the book, but I do keep health records as suggested, which are invaluable.)
There are a lot of good things about this book including the ( many) semi-detached symptoms and conditions resulting from ME, and practical tips on how to maintain the health of your sleeping, eating and relationships.
This is written in short, clear sections and is easy to use as a reference book. The associated website contains many informative articles: http://www.cfsselfhelp.org/library
CHRONIC FATIGUE SYNDROME/ME- Support For Family And Friends. By Elizabeth Turp.
Yup, this is the book to give your family and friends, who are wondering why you don't just get off the bed and do more. This not only explains in clear language what this illness is, but also gives your loved ones ways to support you. This has been used by great success at the Elephant House!!
This is a long read and the type is small, so maybe better to give to the 'Wellies' ( well-folk), in your life
First Hand Accounts/Emotional Support.
CHOCOLATE AND VICODIN- MY QUEST FOR RELIEF FROM THE HEADACHE THAT WOULDN'T GO AWAY.
By Jennette Fulda.
From time to time, I have read one of those inspiring books, a sort of 'triumph over tragedy' memoir. It usually leaves me feeling depressed and inadequate. This is not that book! Fulda writes as if she is lying on your couch, and you are gossiping and snacking- and she is good company!
For those of us who just want to be able to sit on the loo, or make a sandwich without pain- this is for you. Dip in at any point and you can be sure of cheering yourself up.
This is hilarious and I recognised so many of my own experiences with Doctors ( and their waiting rooms), and the brick walls I have hit over the years. Those readers from the U.S will appreciate her labyrinthine attempts to deal with Health Insurance companies.
SPOILER ALERT: Chocolate and Vicodin has a happy ending....but possibly not the one you might be expecting.
A breezy humorous account of unexpectedly finding yourself living with chronic pain. Check out her website:https://www.jennettefulda.com/
THE AMAZING TECHNICOLOUR PYJAMA THERAPY By Emily Ackerman.
She was a Dr in a previous life ( before becoming disabled by years of ME), and in this book she covers so many subjects in such a fresh way.
Chapter titles include: HAND TO HAND COMBAT, OUCH! HANDLING EMOTIONS, SINGLE AND SICK, LOOKING AT LOSS, FRIENDS IN THE STORM...and the cartoons are hilariously on point.!
HOW TO BE SICK- A Buddhist Inspired Guide For The Chronically Ill And Their Caregivers By Toni Bernhard.
Chapter 2 of this account is called: STAYING SICK: HOW CAN THIS BE HAPPENING TO ME?...which really says it all. Toni Bernhard was on a trip to Paris when she got sick ( with what she and her husband assumed was flu), then never recovered. Back home she struggled, and eventually had to give up her job as a Law Professor, and adapt to a sedentary life she hadn't planned on.
As a very experienced meditator and Buddhist, Bernhard, finding herself too sick to meditate, found the principles of Buddhism ( impermanence, acceptance, curiosity, non-attachment etc), were really helpful tools as she continued to grieve for her old life, and time she was unable to enjoy with family.
I avoided this book for a long time...and of course...DOH!... it is really wonderful!! Her writing is fresh and unpretentious, and if you are chronically ill, you will recognise many of the situations and frustrations. It will definitely appeal to you whatever your faith or if you have no faith...and it will be helpful.
Small type and big paragraphs, so one to savour over time and read bits on good days. Check out her website:http://www.tonibernhard.com/
WAKING- A MEMOIR OF TRAUMA AND TRANSCENDENCE By Matthew Sanford.
I have recently discovered and read this book, but I believe it is one I will come back to time and time again. Matthew Sanford is a Yoga teacher...but he is also a paraplegic and physically unable to physically do many of the Yoga poses he teaches.
A road accident when he was 13, killed his dad and sister, and left him paralysed from the chest down. The brutality of his survival and disconnection from the majority of his body, left him hungry for answers: how could he find a better relationship with his body?
This book follows his journey from age 13, with very many medical and emotional ups and downs. It is a visceral, sometimes humorous, account of his life, written in a lively down- to- earth style.
Working with a Yoga teacher he began to rebuild his sense of himself as a physical being, and he understood that, far from his body being a dead weight, it was full of subtle energies and connections that he could explore. He has now developed his practice into a centre that teaches both able and disabled alongside one another, and specialises in helping veterans and victims of abuse.
This is not a book about rising above disability, it is about living it fully and embracing the transformations and growth, that it can bring.
A very gripping and entertaining read. Also check out Matthew Sanford's website: http://www.matthewsanford.com/content/teaching-yoga?phpMyAdmin=4qrRaMSfaJdSKnrro9UtvUEcrT1
and his non-profit Centre: https://www.mindbodysolutions.org/
THANK YOU FOR READING AND SHARING THE CHRONIC ELEPHANT.
may the spoons be always in your favour ;-)
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