Life Is Bliss: An Inspirational Story

By Debbie Bliss

Debbie Bliss has never been a shrinking violet. She has fought all her lifenot just for herself, but for others too.

Now aged forty-eight, there was a stage when she thought she would not live long enough to see her son grow up, to ride a horse again, to travel the world, or to follow one of her greatest passionsto push herself to the limit while raising money for charity at the same time.

Debbie is one of the few people in the world to suffer from dermatomyositis. One in a million are affected by this debilitating condition that can leave sufferers totally paralyzed, in a wheelchair, and unable to walk or even to talk in some cases.

Her reaction when she was eventually diagnosed was not to sit back and be a victim. She fought back, determined that this crippling disease would not triumph.

Debbie has led an incredible life, one which has taken her to all the corners of the earth, including to Australia and the sunshine island of Tenerife.

She was born in Leicester and comes from a family of four girls. Even then, however, life was never easy, and her book gives us an insight into why she became the determined and headstrong person she is today.

One day, she was a healthy, happy, fit, and loving mother and wife. The next, she was struck down by a mystery illness that saw her weight plummet to seven stone and led to months in a hospital ward, where she could only be fed through a tube.

But she did. Life is Bliss conveys Debbies ethos: that life is for living to the full. But in this fascinating book, she also hopes to provide inspiration for othersto tell them not to give up hope, to find that inner strength to fight whatever challenge they face.

• Language: English
• Publisher: AuthorHouse UK
• Release date: Jul 29, 2014
• ISBN: 9781496987952

Debbie Bliss

Debbie Bliss is one of the most popular names in knitwear; in addition to her many successful books – including the Debbie Bliss Knitting Workbook, How to Knit and Classic Knits for Kids – she has also designed clothing for Baby Gap.

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© 2014 Debbie Bliss. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 07/25/2014

ISBN: 978-1-4969-8793-8 (sc)

ISBN: 978-1-4969-8794-5 (hc)

ISBN: 978-1-4969-8795-2 (e)

Any people depicted in stock imagery provided by Thinkstock are models,

and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Contents

Preface

Chapter 1 My Early Days

Chapter 2 From Angel To Rebel

Chapter 3 My Passion For Adventure

Chapter 4 New Life, New Baby, New Career

Chapter 5 The Door To Sunshine

Chapter 6 How Life Changes

Chapter 7 Fighting The Magnets

Chapter 8 My Mission For Freedom!

Chapter 9 A Journey From Hell

Chapter 10 Here We Go Again!

Chapter 11 Getting On With Life

Chapter 12 Climb Every Mountain

Chapter 13 Finding My Destiny

Chapter 14 My Time To Shine

Chapter 15 Back In Australia But Pining For Home

Chapter 16 Looking To The Future …

Epilogue Live Your Life

A

mother’s love is unconditional. That’s the love I have for my rock – my son, Mathew – whom I will love eternally. (We always draw a circle to each other with three arrows directing the same way) Then there is the love and dedication my mum gave me when I was almost giving up. I dedicate this book to both of them and to all those who have

suffered or are suffering as I have. There is light at the end of the tunnel. Thank

you also to Rita Sobot, who inspired me in 2003 to write my story.

Preface

I was just thirty-four years of age when I learned I might never walk again. At best, I might be confined to a wheelchair within the next fifteen years. The very worst scenario was that I could die. I would certainly never ride a horse again.

How could this be happening to me? I had always been so fit, so healthy, so full of life and vitality. Sports had played a major role in my life since I was fourteen. I had played netball, been a good swimmer, won awards for cross country, and gone on to pursue a successful career as a personal trainer. I had achieved twenty-four different qualifications in fitness and exercise before I took ill in 2000. I had been riding horses since I was twelve. What was the point in continuing when both of my biggest passions were to be cruelly taken away from me?

My weight had plummeted. I weighed just over six and a half stone, losing all the hard work of years of training, when my muscles looked toned and my body looked fit and healthy. My muscles were wasting away, my arms looked like long, thin sticks, my hips were sticking out, and every rib could be counted. My legs looked as if they were about to snap. Apart from the rashes on my body, I was very pale. I was fed through the nose due to problems with my throat and my inability to swallow. I was unable to hold my own body weight and sit for long. I remember how heavy my head felt and how it hung down towards the floor. I was exhausted. My muscles felt as they were on fire and were painful to touch. I was, quite literally, a shadow of my former self.

Just a few weeks before, doctors in Tenerife, where I used to live, had no idea what was wrong with me. Neither did I, but I truly thought I was dying because of the way I felt. I couldn’t even hold a toothbrush, let alone clean my teeth. I was so weak, but all I wanted to do was get home to my family and mother in England. I managed to have three seats to myself on the plane, and I pretended I had a poorly back so I needed to lie down. It felt like the longest four hours of my life.

I made it home somehow. Within twenty-four hours of being admitted to the George Elliot Hospital in Nuneaton, Warwickshire, I was diagnosed with dermatomyositis. A one-in-a-million chance, I was told, and I had never heard of it before in my life. I was informed that my own immune system was attacking my body and that there was no cure. The days, weeks, and months to follow were a nightmare I will never forget.

Initially I had limited slow movements. It felt as if my muscles were on fire deep inside. My head was extremely heavy, and it was as though it were full of magnets that were drawing me down to the floor. My head was hanging down, and I spent weeks looking down. For fifteen hours on and nine hours off, I was on intravenous steroids. Eventually, I was confined to a hospital bed, unable to move anything except my eyes and mouth. How can I explain how I felt? Imagine that you can see and smell a piece of toast burning and you know you have to do something about it. You need to move and get to it, but there is nothing you can do. If I did try to do something, it would take an extremely long time.

I was on a side ward behind the nurses’ reception area. It was a geriatric ward, as they never really knew where to put me. I had my own window. One sunny afternoon whilst lying in my bed between visiting hours, I remember looking at the window, which was one-fourth of the way open and had a safety latch on it, as it was on the second floor. I was trying to work out in my mind how to open it fully so I could jump. Not to escape but to die.

It got to the stage where I was fed up with being taken to the toilet or using the bedpan, being helped by the nurses to have a shower in a cold, hard, white chair. I remember being hoisted up into a bath in a sling, unclothed, with no dignity and all my independence taken away.

At one stage, I looked like the Elephant Man. The dermal part of my illness affected the skin. I had a red-purple butterfly rash across my face, which the Spanish doctors had said was sunburn. Oh, how I wish! My face was extremely swollen and my eyes half closed. My condition was so rare that doctors asked if they could take photos of me to put my face in a medical book for others to learn from. Of course, I obliged. There was a time when I would have asked to see the photos beforehand, but at this point, I really did not care. I had rashes on my right hand and knuckles. My head looked large in comparison to my tiny frame, mainly due to the steroids. I had quite literally hit rock bottom. To have been as fit as a fiddle and then have everything taken from me was devastating.

Yet here I am today, fourteen years on. I can walk and talk, I can ride a horse, I can play sports, I can help teach others, I can help with fundraisers for charity, and I can be a mother and a daughter again. I have trekked on the Great Wall of China for eight hours a day for over eight days; cycled from the north to the south of Vietnam, from Hanoi to Saigon; climbed a live volcano in Tenerife; did a free-fall tandem dive from four thousand five hundred meters and trekked to a high altitude in Peru. I fought back and won, and I hope I can be an inspiration to others. I am still here to show that life is for living. This is my amazing story …

Chapter 1

My early days

A middle child, I was born on September 17, 1965, in Leicester. My dad was a lorry driver and would leave early in the mornings. Mum worked in a local shop and had a couple other part-time roles that helped pay the bills. Mum finally lived her dream by owning her own corner shop a couple of streets away from the family home. Both are now retired.

I have three sisters. Karen is two years older than I am, and Kerrie is eleven months younger than I am. I was still just a baby myself when she came along. Poor mum had three small children together in the days when a washing machine was not common equipment within a family home. Then there is Louise, who is seven years younger than I am.

My mum informed me that when I was eleven months old, I had a trick that made everyone laugh. I would turn the corner of our main unfitted carpet back and shred the old-fashioned underlay with my tiny fingers. I would roll the underlay in long, thin, sausage-shaped bundles and place them over my dummy making it appear that I had a huge moustache hanging from the top of my lip. One day my mum could not stop laughing when she looked at me. I had the underlay wrapped around the top of my dummy and had one piece hanging out of each ear – what a sight. Only wish I had a photo of it. My mum made many attempts to stop me, especially because it was dirty fabric I was playing with, but I would only do it again when her back was turned. Mum even attempted to stop me by turning the underlay round because it was so threadbare on one side, but I only started on the new side. Thankfully, I grew out of it over time.

My other thing that drove my mum mad was my love of throwing talcum powder not only on my sister Kerrie and myself but also all over the bathroom floor, causing havoc and even more work for Mum.

Mum tells me that as a baby, I was the one she had to nurse the most; every illness I had was to the extreme. When I had chicken pox, there was hardly an area of my body that was not covered with spots; I was very poorly. When I cut my teeth, I managed to cut eight in one go at the age of ten months and made everyone else suffer as much as I was. Apparently, I would pick up anything and put it in my mouth, so at the tender age of fourteen months, I decided to try the art of swallowing a screw. My cousin Sue was babysitting me and my mum had only just left the house when she heard Sue’s screams for help. Luckily for me, Mum heard those screams of panic as I began to choke on the screw. She ran back, tipped me upside down, and slapped my back. Thankfully, the screw popped out. Thank goodness for their quick reactions; otherwise, my story would have ended there.

As I got older, I spent a lot of time with my cousin Sue, wanting to sleep overnight at her house whenever I could. I was always with her, and I think it was due to the lack of individual attention I received due to being a middle child.

Two of my sisters, Karen and Kerrie, were vaccinated against whooping cough, but unfortunately, I was ill at the time with a bad cold and cough so I could not have the immunisation. My mum took me to the doctor on numerous occasions. Eventually, the doctor informed my mum that she was being paranoid and sent her home with her two-and-a-half-year-old daughter coughing and looking lethargic and poorly. Mum kept the coal fire burning all night and stayed up nursing me. The next day, Mum took me with her to the hairdresser. I was kneeling on the floor with my head resting on the seat of a chair. My mum’s hairdresser took one look at me and informed my mum that she needed to get help urgently.

My mum took me straight home and called the doctor for a home visit, as she was now really concerned due to somebody else expressing her concerns and realising that she was not being paranoid after all. A doctor arrived, and within half an hour, I was rushed into the Leicester Royal Infirmary with pneumonia and whooping cough, where I stayed for nine days until I recovered. As soon as I arrived in the hospital, they put me next to the window to help reduce my body temperature. I became the star of the hospital ward, so my mum says, with my blonde hair, blue eyes, and cheeky smile. When it was time to go home, apparently I ran to the toys and sat down, as I did not want to leave.

1.%20Debbie%20Aged%2011%20months.jpg

Debbie Aged 11 months

2.%20Butter%20would%20not%20melt%20-%20aged%203%20years%20ol..jpg

As if butter would not melt – aged 3 years old.

An ear, nose, and throat specialist thought I was 90 per cent deaf when I was around six or seven. I do remember sitting on a huge chair with silly massive earphones balanced on top of my head. In front of me was what looked like a music production deck – all knobs, buttons, and colours. I was given what appeared to be a large wooden lollipop stick and told that when I heard a noise, I was to tap the stick on the desk. After my hearing test, they grabbed a huge syringe full of warm water and held a kidney-shaped container against my ear, squirting the warm water in. It tickled inside my ear, and the water ran down my neck. I will always recall walking out of the specialist’s office and being able to hear clearly. I noticed how loud the double-decker red buses were when they drove past and how nice it was to listen to the birds singing in the trees. This continued for some time until they discharged me. I believe my hearing is OK now – I just have the normal selective hearing when required!

At the age of seven, due to numerous amounts of throat infections and tonsillitis, I had my tonsils removed. I remember being off school after having my tonsils out and having lots of ice cream and jelly. I remember the day I was released out of hospital and my mum bought me a packet of my favourite sweets, fruit pastels. Lying on the sofa watching TV, feeling cosy and warm and about to eat my fruit pastels, I discovered that our little Yorkshire terrier, Shanie, had eaten them all. She was lying on the floor with an empty sweet packet by her paws, smacking her lips. I was devastated.

Apart from all that, I was a normal child who enjoyed clip-clopping around in my mum’s high-heeled shoes, driving everyone mad with the noise, as well as dressing up in anything that was too big for me, such as my mum’s dresses. I remember starting ballet classes with my sister Kerrie. I used to love packing up my little green heart-shaped ballet case on a Saturday morning to join the group. We were on stage a couple of times when I was around seven, but I did not make a great angelic ballet dancer. Even at a young age, I would colour and draw for hours and hours, something I still enjoy doing now. I remember when I was a little older playing my mum’s forty-fives on the record player, dancing around in the bedroom. ‘Crocodile Rock’ and ‘Billy Don’t Be a Hero’ were my favourites at the time, along with the Bee Gees and anything by ABBA.

There was one family holiday – Mum, Dad, Karen, Kerrie, and I (Louise was not yet born) – when we all stayed in a caravan in Great Yarmouth. I was about seven and will always remember seeing the sea for the first time and thinking how far out the water was. Kerrie and I had a passion for strawberries, and we ate so many one day that we each ended up with a stomach ache.

When we were young, I spent more time with Kerrie, who is less than a year younger than I am. We lived on a street full of terraced houses. Actually, my dad still lives in the same house in which we were raised. We learnt to ride our bikes by going round the block holding on to the wall for balance. When a gap or door appeared, we would let go and learn how to balance and pedal alone. Eventually, I gained the confidence to let go for longer and longer and was then able to ride my bike.

Kerrie and I use to run and race each other for a distance of about ten metres. There was a groove in the pathway where a drainpipe allowed the water to drain from the gutter just outside our house – the starting line – and then there was the same groove about 10 metres up the road. This was our finishing line. We spent hours racing each other; before long, the kids in the neighbourhood began to join us. I became obsessed with it and soon started to increase the finish line so

Reviews for Life Is Bliss

[danielstj · Rating: 4 out of 5 stars]

The dramas were the only letdown in this book. Exquisite language poised with romanticism and lyricism. Byron lived a wild life and his poetry reflects it. A cosmopolitan, adventurous yet gentle heart beats underneath his words.

Well worth the read. Recommended.