Jessica Taylor-Bearman - A Girl In One Room

Ive heard of M.E. before, but I didnt really know what it was, thankfully never had any friends or acquaintances who suffer from it. What an awful illness! This first-hand account was both fascinating and terrible, impossible for me to imagine.

Independent Australian review on Netgalley

This autobiography particularly moved me. A poignant, captivating moving story. I hope she will release another book, her pen is addictive and her book deserves to be known around the world. There are never enough books like that.

Independent French review on Netgalley

If you have chronic pain or an invisible illness, you will find yourself in these words.

Independent American review on Netgalley

This memoir entertains and horrifies at the same time. The voice is spot-on A fascinating and moving account of what it feels like for ordinary daily existence to become a struggle.

The London Magazine

Jessica is an extremely talented storyteller and every word was a pleasure to read. Like many great writers Jessica draws you in with her imaginative narrative and keeps you engaged with every pageI found myself lost in her world.

The Mighty

Published in Great Britain by Hashtag Press 2021

Text Jessica Taylor-Bearman 2021

Cover Design Helen Braid 2021

The moral right of the author has been asserted

All rights reserved. No part of this publication may be reproduced, stored in retrieval system, or transmitted, in any form or by any means without the prior written permission of the publisher, nor be otherwise circulated in any form of binding or cover other than that in which it is published and without a similar condition being imposed on the subsequent purchaser.

A CIP catalogue for this book is available from the British Library.

ISBN 978-1-913835-02-6

Typeset in Garamond Classic 11.25/14 by Blaze Typesetting

Printed in Great Britain by Clays Ltd, St Ives plc

HASHTAG PRESS BOOKS

Hashtag Press Ltd

Kent, England, United Kingdom

Email:

Website: www.hashtagpress.co.uk

Twitter: @hashtag_press

This book is dedicated to the millions suffering from Myalgic Encephalomyelitis across the world who are missing from society. It is for every person who hasnt felt heard or represented, those who have sadly lost their lives to the disease and for those who are being institutionalised simply for becoming ill.

This sequel has only been made possible through the incredible support I have received since A Girl Behind Dark Glasses was published in 2018. It was written over a long time due to my fluctuating chronic health and was edited throughout 2020 - the year a pandemic swept over the world. In the UK, a national lockdown was enforced to try and stop the virus spreading.

It was as if the whole world got a glimpse into the lives that chronically ill people live with every day. As an M.E. sufferer, lockdown is not a new situation for me. Ive been living with it for years!

Without the incredible help from the NHSeven with the limited understanding of M.E. and often challenging admissionsI wouldnt be alive. I want to say thank you to Dr Paul Worthley who championed me and helped me more than I can ever express. My carers and nurses who have been with me in every emergency. Also I must thank my physiotherapist Clare and occupational therapist Diane who were so instrumental in my journey.

My husband Samuel has supported me, my health, and my dream of becoming an author, since we first met. Our beautiful daughter, Felicity, has brought so much purpose to our lives. Watching her grow up and being her mum is one of my greatest achievements.

Team Taylor and the rest of my extended family have been my rock. Theyve sacrificed so much for me. So Becky, Tom, Mum and Dadthank you. Ive been supported by some incredible friends, particularly Gail Gladdis who has been there come what may, Stewart Dimmick for always keeping me in check, and Sadie Hancock for being an incredibly loyal carer who then became one of my closest friends!

My incredible bedridden bridesmaid Alex Bliss.

Finally, I must thank the two incredible ladies who have believed in my vision from day one. Helen and Abiola thank you for your ongoing support and all the hard work youve put into this, whilst editing it alongside the fabulous Tiffany Schmidt.

I have been living in a recurrent nightmare of ill health since 2006. Its name is Myalgic Encephalomyelitis (M.E.). Just before my fifteenth birthday the M.E. Monster struck and changed my life forever. Before then, I had little understanding or knowledge of the chronic disease and how it affected the sufferer. I had only heard it being spoken about briefly in 2003 when I found out a girl I once knew had been diagnosed with it.

I was told in hushed voices by many people that we didnt do M.E., and the joke was that it stood for More Excuses. I never saw the girl at my youth group again. It was like she had fallen off the face of the earth. Little did I know, a few years later, that would become my reality.

M.E. is a neurological disease that is invisible and still widely misunderstood in the medical world. In fact, it is so misunderstood that even doctors fight overnot only the cause of itbut the actual name of the disease. Many call it Chronic Fatigue Syndrome (CFS), but personally, I feel that that description is laughable in comparison to the daily suffering that I face.

Before the M.E. Monster inflicted chaos into my life, I had been the picture of health and happiness. My school report in 2005 read (in almost every subject) Jessica is an avid learner who is enthusiastic about everything she does but she does tend to talk too much!

I had been the epitome of a normal teenager living my best life. I had made no plans to leave it behind. Then, just like that, I lost it all at the tender age of fifteen.

The devastating symptoms destroyed my life. In a matter of months, my eyes became so sensitive to light that I couldnt bear to open them. I literally became a girl behind dark glasses. I lost all ability to function and was completely bedridden. I was admitted into hospital by the end of 2006; tubes were inserted to keep me alive and I faced a doctor who couldnt pronounce the name of the damn condition, let alone treat it.

I spent four continuous years in hospital on my own because I was deemed too unwell to be able to manage the stimulation of living with my family. Even though my health was fragile, the funding ran out for the hospital I was in. Then the argument mounted as to whether I would need to be moved to a nursing home at nineteen, or if my condition could be managed at home with community care. I desperately wanted to be able to go home and be reunited with my family. I wanted to live with my little sister Becky, who had been a child when I had left, and was now a teenager.

I learned a method to try to manage my symptoms, by pacing my energy throughout the day. I finally managed to make sufficient progress that it was agreed I could return home with twenty-four-hour care.