Dealing with Disability

Victoria Cairns

Description

Dealing with Disability provides invaluable advice for dealing with the troubles of life and gaining acceptance of what cannot be changed. It is written primarily for people who have recently become disabled and their relatives to help them gain confidence and do their best in dealing with their change in circumstances.This inspiring book is based on the author's experience in becoming disabled herself as a result of complications following a heart operation. It focuses on developing the right mental attitude towards handicap and still have a good life. It discusses avoiding negative thoughts and developing perseverance, and how to move on from trauma and let go of anger, blame and regret.Inside this book is a mix of psychological information and practical advice, while providing the supportive, scientific background for the information given, and the sources of evidence. It mentions useful strategies, exercises, treatments and devices. It also contains encouraging quotations from well-known people with physical disabilities.

Informations

• Publié par: Troubador Publishing Ltd
• Date de parution: 21 mars 2019
• Nombre de lectures: 0
• EAN13: 9781838598761
• Langue: English
• Poids de l'ouvrage: 1 Mo

Extrait

Copyright © 2019 Victoria Cairns

The moral right of the author has been asserted.


Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may only be reproduced, stored or transmitted, in any form or by any means, with the prior permission in writing of the publishers, or in the case of reprographic reproduction in accordance with the terms of licences issued by the Copyright Licensing Agency. Enquiries concerning reproduction outside those terms should be sent to the publishers.


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ISBN 978 1838598 761

British Library Cataloguing in Publication Data.
A catalogue record for this book is available from the British Library.


Matador is an imprint of Troubador Publishing Ltd
Contents
PART I
My Story

1. Introduction
2. The cause of my spinal cord injury

PART II
Mental Attitude

3. Brain recovery
4. Perseverance
5. Avoiding negative thoughts
6. Vulnerability and hypersensitivity
7. Moving on from trauma
8. Adjusting my expectations and my aims
9. Letting go of anger, blame and regret

PART III
Exercises, Treatments And Activities

10. The importance of exercise
11. Getting back to a fairly normal life
12. Imagining sport and movement
13. Other possible treatments and exercises

PART IV
Postscript

14. Some admirable people with physical disabilities
15. A brief history of my life before the operation, with some factors helping me to develop a positive attitude in the face of obstacles
16. Writing this book

Appendix

References
Organisations providing support and advice
Disability equipment
PART I
My Story
chapter one
Introduction
October 20 th 2017 . Last night I dreamt I was standing and that I took three little steps shuffling forwards. That told me that my brain has not forgotten that I used to walk, and that I hope that I may be able to manoeuvre myself about moderately well using my arms somehow one day in the future.

Apparently I was told several times in my first months in hospital that I may never walk again, but I do not remember as I was probably too ill to hear and comprehend what people were saying. Later a physiotherapist told me that I should not assume that I would be able to walk again, but that I should remain optimistic. This was followed by: “You can have a good life in a wheelchair.” Of course I cried, but, despite the first shock, this encouraged me, particularly when I thought of my two relatives in wheelchairs who have good lives and do enjoy themselves. My husband said that I can continue to do many of the things I have always enjoyed, such as chatting with friends, reading and watching films.

I was encouraged by the book The Healing Power of Mind by Tulku Thondup, which contains ideas in common with recent discoveries in neurology about brain regrowth and healing. This overlap with Eastern traditions is recognised in the preface of the book, The Brain’s Way of Healing , by Norman Doidge. It inspired me to fight on, and I realised that to some extent much will depend on my attitude and how hard I work on exercises to rebuild certain abilities.

Certainly it is a struggle, and inevitably I have sometimes felt downhearted. One time when I was in a lot of pain that never seemed to stop, a nurse in the neurology ward said very gently, “Don’t cry, it makes me sad if you cry.” And another time, when I was with an occupational therapist, I said, “I am having a bad day,” and then sobbed, “I hate being a cripple.” I will never forget her comforting me and giving me a hug. I could often hear the nurses near me in the neurology ward talking to very distressed patients: “Don’t worry, sweetheart, I am here next to you, and you are quite safe.” The comfort that so many of us have received is never forgotten.

My cousin Eva has said to me that I should say “Thank you”. Being a nurse, she knows what it means to the recipient. I had assumed it was obvious that I was grateful for any help, but I now see that it is important to show how much you appreciate what others are doing for you. They will feel better to know they are acknowledged and valued.

It may be hard for others to imagine that when we are so very vulnerable and weak as patients, the comfort that is given makes such a difference. Encouragement also is a huge help, as it so easy to become low and discouraged. This is a time to develop some inner strength, and it does help to have support.
chapter two
The cause of my spinal cord injury
In 2016 I suffered from increasingly disturbing episodes of a disorder known as atrial fibrillation, which is a form of irregular heart rhythm. As mentioned in Chapter 15, it is possible that my atrial fibrillation was a long-term result of having had Lyme disease, a bacterial infection caught from a tick. Atrial fibrillation can lead to a blood clot forming inside the chambers of the heart, which may result in having a stroke. I was therefore taking the drug apixaban, a blood-thinner to prevent a blood clot forming, but it led to my having some troublesome side-effects, including dizziness and weakness. It was becoming a burden, and I was often woken in the night by feeling my heart beating strangely. At the time, a friend said she had noticed that I was really not looking well. I bought a heart monitor so that I could record what was happening. In December, after two episodes, each lasting more than 12 hours and leaving me feeling very weak, I decided to go ahead with having an operation to solve the problem. I did not want to continue with the medication and thought an operation was the preferred alternative. The procedure, which is called ablation, involves inserting a thin, flexible wire called a catheter into the heart, and then using heat or cold to destroy the area of the heart muscle that is triggering the arrhythmias. I knew that this keyhole surgery carried a slight risk and that ablation can sometimes cause a little bleeding where the catheter was inserted.

In January 2017, I had the operation to deal with the area of my heart that was causing the abnormal heart rhythms. Unfortunately it resulted in a perforation of my heart. This is a known potential complication that occurs in about 1 percent of cases, around half of which then require heart surgery. The perforation led to significant bleeding around my heart which compressed it and stopped it from beating properly. The cardiologist inserted an emergency tube into the space around my heart to drain the blood but then, unfortunately, the blood at the back of the heart clotted and this pressed on the veins draining from my lungs into the heart, which resulted in a cardiac arrest. It was my bad luck that the only nearby operating theatres were occupied by two emergency patients, so I required a prolonged resuscitation for 90 minutes before I could have the open-heart surgery that I needed to remove the blood clot and fix the bleeding area. The prolonged resuscitation led to reduced output of blood from my heart and low blood pressure, which resulted in damage to my spinal cord and, to a lesser extent, to my brain. I also had a series of brain seizures, probably because my body was receiving such a shock. This has left me with a spinal cord injury, known as T8 incomplete, and slight brain damage. I am unable to walk or move my legs normally, and I have some difficulties focusing on images, thinking mathematically and remembering things. Such prolonged resuscitation often results in severe brain damage, or even death. My survival and minimal brain injury are a tribute to the skill of the resuscitation team.

I remained in a coma for nine days and in intensive care for a month. My husband, parents, brothers and Eva came to see me while I was in intensive care. Despite not actually remembering it, I have recently had the feeling that a wave of comfort ran through me whenever one of them said they were there right next to me. Around that time Eva told her mother that she should come and sing to me a song from my childhood, so she came and sang “Waltzing Matilda”. I started to join in by mouthing the words, and this was the first sign that I could hear and understand what was going on around me. Until then I had only occasionally and very briefly opened one eye. Music and of course talk can be very helpful for patients in a semi-conscious state.

I then spent over three months in the John Radcliffe Hospital in Oxford and four months in the Oxford Centre for Enablement. So altogether I spent nearly eight months in hospital, but was then able to come home in August.
In the month before I came home my husband had our house converted to be wheelchair-friendly. Luckily our house has one main floor downstairs, and it is small and suitable for conversion. The dining-room was changed into my bedroom and the nearby utility room was converted into a shower and bathroom with wheelchair access. The floor of the new bedroom was lifted to be at the level of the living room, and two doors were widened so I that I can wheel myself about on the ground floor. I cannot go up to the bedroom upstairs, but a ramp was built next to the living-room so that I can wheel myself outside. We also now have a video door entry kit so that I can see who is outside the front door, speak to them and press a button to let them in.

I was very worried at first about coming home as I still nee