Shattered : Life With M.E.

by Lynn Michell

It is March 1987. There is a flu bug doing the rounds in Edinburgh, which floors Lynn Michell and her two sons. Instead of pulling out of their ill and exhausted state, none of them gets better. It takes three years for Lynn's elder son to recover. She and her younger son are still ill 16 years later. This account of life with M.E., an unpredictable and devastating chronic fatigue illness that is still widely misunderstood and undiagnosed, is an emotionally intelligent, compassionate and often angry tour de force. Offering a personal insight into life as an M.E. sufferer, "Shattered" should be of help to sufferers in their fight for recognition and a comfort in their hour of need. While the first person snapshots of sufferers of all ages, describing the many different forms this illness can take and the effects it can have, can paint a bleak picture of a "life interrupted" and the lack of support and stigma from the public and the medical professions, readers should be able to draw hope and support from the shared stories. In addition to the stories of living with M.E., "Shattered" advice on how to deal with social workers, teachers and other professionals; advice on how to deal with relationships; an exploration of life with M.E. from a young person's perspective; an exploration on the effect of M.E. on family life; advice on how to cope if you're a parent of an M.E. sufferer; and recommended complementary therapies and therapists' views on treating M.E.

368 pages, Paperback

First published May 6, 2003

About the author

I was born in Liverpool, the daughter of a soldier, so my childhood was spent in barracks across the globe including two war zones. I grew up in Nairobi, Tripoli, Malta, Cyprus, Germany and the UK but never called anywhere home. Up to the age of 17, I lived in 28 houses, tents and flats and went to 17 schools. I’m envious of folk with strong roots because I have none.

Without stability, army brats can become solitary and self-sufficient or go off the rails. I escaped into books - my safe zones - away from marching soldiers and the colour khaki.

I was the third cohort to study English and Drama at Birmingham University, but I didn’t fit. My PhD thesis was on children’s language where English and Psychology melded and my fascination with words came full circle.

While lecturing at Keele university, Oliver & Boyd accepted my proposal for a writing scheme. Growing Up in Smoke and Shattered: Life with ME followed. The wonderful Women’s Press published two of my books under the name Helen Braid.

My debut novel, White Lies, is based partly on my elderly father’s memories of his time in Kenya fighting the Mao Mao. My second novel, Run, Alice, Run, is a retort to a society that makes older women feel irrelevant and invisible.

My third novel, The Red Beach Hut, my personal favourite, is out on October 1st.

I also run Linen Press, the only independent women’s press in the UK: www.linen-press.com

Reviews

[Jodi · Rating 5 out of 5]

This book has some of the best descriptions of what it feels like to have M.E. that I've ever read, especially the sensory overload elements of it.

It's a very well written and easy to read book too. (Illness allowing obviously!)

It does contain a few small but very iffy bits (courtesy of the always worrying 'ME/CFS' supporter Dr Charles Shepherd) but the rest of the book is excellent so just ignore those bits completely and concentrate on all the solid content, I say.

This book describes severe ME really well. A topic avoided by almost all M.E. books. There are some fantastic descriptions of what it means to have severe ME and it also talks about how rarely we hear these stories, how much we need to start hearing them and realizing how severe this illness can be. It is brilliant stuff.

It is so helpful to hear legitimate descriptions of severe M.E. when that is what you are dealing with. Just to know you are not alone is so powerful.

This book is highly recommended.

Quotes:

"I am confined to bed for 80 - 95 per cent of my day and often when I make any degree of effort, however small (e.g. Getting up, going for a short walk, talking on the phone) within minutes my body often gears up into what I term `the hyper'. The `hyper' is like a full-blown panic attack without the psychological element. I am not frightened or nervous in any way but my body becomes both taut and shaky; waves of prickly run from the soles of my feet to my scalp; my mind suddenly becomes less `brain fogged' and my thoughts race and jump about. I feel ransacked by adrenaline, but profoundly weak. It is as if my nervous system is going into crisis mode in a desperate attempt to process everyday information such as polite information or the layout of an unfamiliar room."

"At the turn of the millennium, the public still lacks a real grasp on what ME patients are dealing with. Because of illusions that ME is simply a disease of tired people the public has large been deprived of accurate information."

"[Legitimate descriptions of the illness are] a far cry from the hopelessly inadequate description of ME as `chronic fatigue.' The distinction between fatigue and ME needs emphasising. If you are tired all the time, you do not have ME. If you are feeling drained following a viral illness but are recovering over weeks or months, you do not have ME."

"This is not fatigue. This is a state of overstimulation which results in near or total collapse. One of the things that has been shown over and over again is that biologically [people with ME] have an inability to respond to stressors [or stimulus.] Although ME is sometimes described as a stress-related illness, what stress means in this context is `the non-specific response of the body to any demand.' So, while healthy people cope with the demands which assault their senses, responding appropriately to what is relevant while ignoring what is not, people with ME have lost the ability to manage the sensory input of their environment."

"A central problem is the word `fatigue' which doesn't come close to describing how sufferers can feel - comatose might be better. Like most people with ME I have acquaintances who say, `Oh I feel tired at 4pm too, and would love a snooze.' But that's not it. People with ME are so finished that they have to lie down. There is no other option. Minds and bodies do not function. This is nothing like fatigue."

How good are those quotes! Typing them out made me so ill at the time but it was worth it as they really are very good and sum up so much of what M.E. patients are saying and thinking - that never makes it into a public forum. Thank you Lynn Mitchell for all your hard work.

If you have an interest in M.E. you may also like to read books and articles by Dr Hyde and Dr Dowsett, the world's leading M.E. experts.

Jodi Bassett, The Hummingbirds' Foundation for M.E.

[mandy sheehan · Rating 2 out of 5]

Outdated book and not worth reading.