A Day in A Life

By Janet Andrews

Janet Andrews has enjoyed a happy and fulfilled life, as packed with adventure and drama, love and laughter as she could have wished. But it has not been a carefree one. As a young woman she developed an acute form of multiple sclerosis, which has progressed until Janet, now in her sixties, is largely paralysed with the exception of partial movement in one arm and hand. It has progressed to the point where she cannot get up or go to bed without the assistance of carers and a mechanical hoist. Yet her remarkable sense of humour and her love for her family and the world around her shine on undiminished. Funny, moving and inspirational, A Day In A Life is Janet’s story.

• Language: English
• Publisher: Mereo Books
• Release date: Oct 13, 2012
• ISBN: 9781909020498

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A Day in a Life is Janet’s Story

By Janet Andrew

Smashwords Edition

Copyright ©Janet Andrews, September 2012

First published in England, September 2012

Published by Memoirs

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Book jacket design Ray Lipscombe

ISBN 978-1-909020-49-8

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No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise without the prior permission of Memoirs.

Although the author and publisher have made every effort to ensure that the information in this book was correct when going to press, we do not assume and hereby disclaim any liability to any party for any loss, damage, or disruption caused by errors or omissions, whether such errors or omissions result from negligence, accident, or any other cause. The views expressed in this book are purely the author’s.

To my family, my constant inspiration

Contents

Chapter 1. Time for a storm

Chapter 2. African diary, part 1

Chapter 3. African diary, part 2

Chapter 4. A child of the fifties

Chapter 5. Musical memories

Photo Pages

Chapter 6. Growing up in the sixties

Chapter 7. Time to reflect, and how it all began

Chapter 8. Things can go wrong

Chapter 9. Saving the best until last

Chapter 10. The end of the day

Chapter 1

Time for a storm

May 2011

The swifts are back. Scything through the air on outstretched wings they cross the heavens, oblivious of us, earthbound so far beneath. They bring the summer with them. I feel their energy, I am amazed by their innate skill, their beauty. Oh to be up there with them, looking down on our ordinary lives!

* * *

It’s been a difficult week. Sometimes things can go so wrong, and then the frustration sets in. It doesn’t happen often. Most of the time I just get on with the day, or the night, and fill my mind with other things. But just lately I feel swamped by it, suddenly overwhelmed by the sad realisation that now I am almost totally paralysed.

Maybe I do need to talk about it. After all I have lived with multiple sclerosis for 26 years, so perhaps the time is right. A storm to clear the air could help my mind to readjust. Thirteen of those years have been spent in a wheelchair, and like most people who live with this debilitating disease, I feel the experience shouldn’t be allowed to slip away unnoticed, untold, to be worthy of a mention in someone else’s life only by chance.

It is a shared journey, but in retracing it, I think I will find much humour amidst the disruption that it has brought to all our lives. Sad moments, of course, but also many funny ones. It would be neglectful of me to keep them to myself. But then, I’m certainly not the type to moan about how difficult my life has become. How insensitive that would be in a world where so many people live with devastating illnesses, where so many exist in such dire poverty and hunger, and so many children die before their first birthday. How could I wail about my predicament when my own little daughter became diabetic at the age of seven?

No, I was lucky enough to be a healthy, active specimen of the human race and to stay that way for over thirty years. Born in a country where good health is almost taken for granted and long life is regarded as the norm, I had a career, a happy marriage and two lovely healthy children before the ship started to run aground. How fortunate to have achieved all of that.

Thank goodness I’m an optimist. It’s so important to feel positive, to plan ahead, to find a way round the hundred and one problems which crop up every day. Technology comes to the rescue so much with computers, voice recognition software, even wheelchairs that can climb stairs. It really is amazing how much is out there. But nevertheless, it can still be a tremendous struggle trying to live with a degree of normality, and of course, leading as normal a life as possible is the ultimate goal. I am continually finding ways to cope with gradual decline, so that at least something can be achieved in the course of a day. Perhaps by having a catharsis on paper I can clear away this build up of frustration that circulates like some vast weather system in my mind. I need to have a storm to clear the air!

How can I give these feelings voice? But that would only give them form and shape and make them more real. Perhaps I shouldn’t even do this. Will it make me feel better? I think it will.

I need to describe what life is like now. That would be a good place to start. Intermingled, I think, with some recollections about time spent in London in the late sixties. Oh, and that would lead on to an interesting episode when I went to visit my sister Frances and her husband Paul while they were living in Uganda. Now that is worth writing about!

I know I can’t do this without going back to the fifties and sixties to recall so much about my childhood and events which affected my life. In doing so I can recollect the all-too-short time I had with my dear mum. My thorny association with MS began in the mid eighties when I was 35 years old, so perhaps I will leave the details of that until later. It has inevitably intruded more and more into my life and has meant lots of changes for us all. Family life had to adapt, but by writing about the ups and downs I hope to clear my mind and inject some fresh optimism. There’s always a chance. It helps to have a fresh definition of one’s life. So, with much trepidation, I will begin.

I wake at about 4.30, usually from a dream which has had me running, cycling or climbing to rescue one or other of my daughters from some terrible fate. It’s part of the timewarp my unconscious mind seems to be anchored in. Longing to be an effective human being again with a functioning body, I dream of them at their most vulnerable, as babies or small children. Seeing them caught by a rising tide or stumbling down a rocky cliff, I spring into action and dash to their rescue like some female Lone Ranger. I snatch them from danger at the last minute.

Strange, isn’t it? The reason for waking then becomes clear. It’s time for a total body spasm. ‘Oh no, not one of those!’ I cry. My paralysed muscles, forever still and asleep, are suddenly urged by an incompetent nervous system to move. Rather like a drunk conductor trying to motivate an orchestra that has completely forgotten how to play – he struggles to do his job but fails hopelessly. The result is a pathetic attempt to move a body that has been switched off and disconnected for many years.

Here we go… it’s as I would imagine a tetanus spasm to be. Arched back, rigid limbs. Very painful. When it’s over and all body parts return to their original position as laid out by two carers the previous evening, I gaze up at the familiar icy landscape of my artexed ceiling. If it’s daylight, my sleepy eyes drift over photos and paintings on desk and cupboard; familiar moments in time caught by lens and brush. How we have all changed, and how I want to cling on to those moments when my children were so young. Such a time of innocence.

Early morning is a bad time to cruise the memory archives. The girls have grown up and left home and now live their own lives, but I am triggered into thoughts and recollections which may hopefully send me back to sleep – if that damned conductor doesn’t come back for another rehearsal!

It’s nearly 8.30 now, almost time for carers to descend and begin the daily round of moving me from bed to shower, but before they do I need to explain some details to you. This is in no way self- indulgent or meant to elicit pity in any way. Definitely not. This is just what I need to do right now – to mark it out, get things straight in my mind so I know where the openings and boundaries are. It’s the only way I can go forward.

Anyway, there isn’t much left in the way of a functioning me. The whole of my left side from my toes to the top of my head is paralysed, and that means neck and trunk muscles. The right side isn’t much better, but the good fairy did leave me with a partially- functioning right arm and hand. Unfortunately my fingers are now rapidly turning traitorous and are ceasing to function. There is little grip or manipulation remaining, but I can still just wield a toothbrush and a fork, and (thank goodness) hold a glass of wine. I do need a straw to transfer the contents to my mouth, but that is a minor drawback! Turning the pages of a book is very difficult now and I’ve had to give up playing darts (joke).

However, the real pain in all this is not the paralysis, it’s the fact that the two halves of my body are affected in different ways. The muscles on the left side of my trunk and neck are extended and rigid, while those on my right are contracted and rigid. It means that I can’t move my head now, and also that my body is being pushed right over to one side. My lungs are slightly compressed, and my head has been pushed over towards my right shoulder. What a look!

But despite all that, bad as it sounds, there is much that still functions well and much to be positive about. I can still talk. My vision is unaffected, which is unusual for someone with MS. In fact I don’t need glasses at all. I have a healthy appetite, and thank goodness my mind is intact. Most internal organs are functioning normally, so all in all there is much to be grateful for, especially when I see the daily dilemmas diabetes has brought to my daughter Rachel’s life. It is a great gift to have a perfectly functioning body.

I enjoy the last few minutes before the day officially begins. It’s an interesting experience being hoisted out of bed. Legs are moved first, to loosen the muscles, and then the body rolled to allow a sling to be placed underneath me. Conversation ranges spectacularly, from personal dilemmas to the latest upset in the caring profession. I join in if I can, as I am rolled from one side of the bed to the other, catching a glimpse of a bent foot lodged under a bar perhaps. ‘Heck, will they notice? Yes… no!’ Too late. The foot follows the rest of me anyway as the sling cradles me and I rise majestically from my bed. Hovering in mid-air, I am swung into position above my next destination and begin a controlled descent on to a shower chair.

I admire my carers so much. Where would I be (and thousands like me) if it wasn’t for them? Underpaid and working all hours, they go from house to house, hoisting, washing and dressing us so that we can live relatively normal lives. Most importantly, in our own homes. I can’t thank them enough. Who knows what illnesses lie in wait to alter so drastically the path through life that we planned?

I did a nursing course at St Thomas’ Hospital in London at the end of the sixties. Never for one moment did I think that I would become a patient, although the experience I gained has helped me to cope with all the pitfalls of a chronic condition. Unusual neurological diseases filled the medical wards. I remember the sufferers by their faces. Sometimes, when on night shift and struggling to stay awake, I would do sketches of them to focus my mind. The worst period was between two and three in the morning, when the stillness in the ward could be soporific.

I remember Victor, almost completely paralysed, unable to talk or breathe properly. His expression was one of grim determination as he struggled to cope with motor neurone disease. Then there was Frank, a permanent grimace on his face even in sleep as he endured the final ravages of Huntington’s Disease. Also, how could I forget Billy Baxter, a dear little man whose agitated, trembling limbs, so afflicted by Parkinson’s, were finally stilled by sleep. Memories of them come flooding back. There’s so much time to reminisce.

It’s strange that the one disease I really dreaded was the one that came out of the blue to flood into my body. Multiple sclerosis filled many beds, mainly with young women who were severely disabled, often in their early thirties. The cases I saw were mostly progressive and aggressive from the start, which is why they came to St Thomas’ in the first place.

Scrutinized by gawky medical students and groups of nervous, fidgety student nurses in creaking starched aprons, we would crowd round the bed of some poor unsuspecting patient. The bizarre symptoms were pointed out and demonstrated with cold-hearted detachment – everything from flickering, uncoordinated eyes to legs which would judder uncontrollably when the consultant pulled on a foot. A good example, he would say, of ‘clonus’.

‘Rapidly flexing the foot upwards,’ he says full of authority, a movement known as dorsiflexion (as if we didn’t know!) produces this diagnostic symptom.’ He goes on to impress us further, saying that clonus comes from a Greek word meaning violent, confused motion. A confused patient would usually wonder what on Earth was happening to them as their feet juddered around the bed. If the patient could walk, they were often asked to do so, just to demonstrate the type of gait that typified the illness they had, or more often didn’t know they had (it was a teaching hospital, after all).

We helped them stumble, hobble, limp and stagger round their beds and made mental notes as they rolled back under the safety of their hospital sheets, so glad to be away from our penetrating gazes. Our appearance, however, belied our thoughts. Efficient, caring and studious we might have looked, but underneath we were usually just plain hungry and losing concentration fast. Must be time for lunch soon! Wonder what it is? Wonder who’s going out tonight? Gosh I’m hungry!

Hunger, the great driving force of all student nurses! Well it was for me. We all needed huge quantities of food to keep us going, three cooked meals a day plus piles of bread and jam in between. It was a life of constant activity, coupled with huge amounts of stress. The more senior the nurse, the greater the stress. Sick people require constant monitoring and frequent attention. With at least 30 in a ward, it was demanding work.

Surgical wards were the most intensive. Drips and transfusions to monitor, dressings and douches to do, blood pressures to check, liquids to pour down naso-gastric tubes, orifices to wash out. The list was endless. No wonder I had to lie down in a dark room at the end of every shift!

There was a social life to consider – this was the Swinging Sixties after all, although it wasn’t called that until well after the decade had ended. Those who had a swinging time decided in a collective sort of way to elevate the decade to a cultural high point, a time of sexual freedom and a united feeling of living for the moment. How peeved some of us were to realise that everyone else was having a whale of a time while we were too busy getting on with life of a slightly different sort! That was how it felt looking back from the more sombre nineties anyway.

But how could you live where I did and not realise that something ‘cool’ was happening? Our Nightingale Nurses’ Home was on Chelsea Embankment, not a stone’s throw away from the King’s Road. This long stretch of urban sprawl was apparently the painted face, the stylish scene of this chic time. It was the centre of the sixties universe. I didn’t know that Mick Jagger was living a life of luxury less than a hundred yards away from me in the swanky affluence of Cheyne Walk. I just thought I had the good fortune to live in a lovely part of London, right beside the river and near to some great coffee bars.

I knew that it was a wealthy part of the city. A walk to Sloane Square would take you past several E-Type Jaguars occupied by ‘guys and dolls’ who were presumably into that mad, liberated free-love scene. They did look care-free and very different to the way I felt. The prerequisite for their lifestyle was either having wealthy parents or being old enough to have a job in the city. Nursing just couldn’t aspire to those heights. We had chosen the path of dedication, the starched aprons and frilled hats, as dictated by the Florence Nightingale manual of nursing etiquette. But looking back on it all now, it was worth all the stress and hard work. It was an amazing experience. Eventually, after completing two other courses, in midwifery and health visiting, I ended up, for as long as I was able to work, with an interesting and rewarding career.

During much of my time as a student, I was scared by the responsibility hands-on nursing brings. So often there could be a lecture on a devastating disease or condition, a demonstration of how to cope if patients bleed, obstruct or generally fall apart, and then hey presto, this terrible event happens on your first day on Ward Disaster Awaits. You realise nothing has been exaggerated and you get ready to panic full time.

It was always such a relief to find the laundry room full of boxes of chocolates, vital sustenance left by grateful departing patients who knew we needed comfort and reward for helping them survive. The beds could be full of blue-tinged patients waiting for their next coronary to happen, or perhaps with paper thin aneurysms waiting to burst. Maybe they were harbouring huge blood clots which were about to get pumped to unsuspecting lungs. Or why not a stomach ulcer, just about to erupt before suppers are served out – all on my shift!