Classic Pacing for a Better Life with ME

Description

Classic Pacing for a Better Life with ME is a self-help book which explains pacing and how it can be applied to daily life. Although aimed at patients, the book can also be of interest to professionals. Pacing is a coping strategy used in illnesses that cause low energy levels. It consists of splitting activities into small chunks so that symptoms are not worsened, as well as alternating activity and rest to maintain energy levels throughout the day. Pacing can be done in a variety of ways, and there are several different tools which can be of help. Classic Pacing for a Better Life with ME presents a full range of strategies to enable the reader to find the ones that suit their situation. It covers all degrees of illness severity and there is a special chapter on how to pace education, making the book useful to young readers. The first part of the book covers basic pacing, and is well suited to beginners, whereas the second part covers advanced pacing, which is relevant to patients who have been ill for a long time and have tried many ways to improve their situation. The third part of the book consists of chapters on different themes, such as how to pace social activities and big events. Great care has been taken to ensure that the book is as easy to read as possible. All the chapters begin with a summary. This means that even people who can only read very small amounts of text can still benefit from the book. In addition, all the basics are covered in Chapter One, which means that the reader can get going straight away without having to read the entire book first. Each chapter can be read on its own like an article. The detailed table of contents makes it easy to find the sections that are most relevant to the reader's needs. The language of the book is reader friendly with everyday words and short sentences. Although the book is geared particularly towards people with ME, much of the content is general enough to also be relevant to people with other illnesses that cause low levels of energy. Foreword Foreword From Norwegian Edition Introduction: How To Use This Book Why Try Something That Is Not A Cure? About ME Part 1 Basic Pacing Chapter 1: Living on a Tight Budget ME – Living On A Tight BudgetUnderstanding Energy Warning SignsConscious Experiments Rest RelaxationSwitching Enjoying YourselfOther Factors That Affect Your Illness Who Can Help With Pacing? Others Cannot Pace For YouThe Advantages of Pacing Tasks Patient Experiences: Karina, 30 Years Old Chapter 2: Energy Conservation IntroductionThe Main Principles of Energy Conservation Energy Saving Tips Finding the Right Equipment AssistanceSubstantial Assistance Needs Tasks Chapter 3: Cognitive Activities IntroductionPacing of Mental Activities Split Up Mental Activities Make Sure you Vary the Activities Do One Thing at a Time Mental OverstimulationHow Cognitive Problems Can Make Pacing Difficult Strategies you can use when Cognitive Problems get in the Way of Pacing Remembering the Activity Diary Tasks Chapter 4: The Activity diary – An Important Tool IntroductionIs it Necessary to Keep an Activity Diary? Simple Diary Detailed DiaryElectronic Diary Other DiariesA Bit about Interpreting a Simple Diary A Bit about Interpreting a Detailed Diary Using a Diary in the Long Term Tasks Chapter 5: Main Activities and Priorities IntroductionMain Activities Example 2: Peter’s Main Activities Example 3: Hanna’s Main Activities Undemanding Activities Example 4: Geir’s Distribution of Activities When the Main Activities are too Strenuous Planned Overexertion Conclusion Tasks Chapter 6: A Flexible Routine IntroductionAdvantages of a Flexible Routine Preparations for Making a Routine First Step: Spread the Activities Example 1: Neha’s Routine Second Step: The Length of Activities Third Step: Add Rest BreaksFourth Step: Consider the Less Demanding Activities Fifth Step: Plan Possibilities for Variation Sixth Step: Try out the Plan Tasks Patient Experiences: Heidi, 26 Years Old Chapter 7: Improvement and Increasing Activity IntroductionWarning Signs When is it Safe to Increase your Activity Level? How often can you Increase the Activity Level? Which Activities should you Increase? Different Strategies for Increasing Activity Unfamiliar ActivitiesDividing up New Activities Avoid One Step Forward and Two Back Avoid Setting Fixed Goals Beware of Warning SignsMasking A Time of Great ChallengesWhen does the Process of Improvement Stop? Tasks Chapter 8: Relapses Introduction Emotional Stress Other InfectionsVaccinations Warning Signs How to Minimise an Approaching Relapse Tasks Part 2 Advanced Pacing Chapter 9: Pacing in the Short and Long Term IntroductionThe Base Level of Activity Three ExamplesLow Symptom Level is a Relative Concept Challenges at Different Activity Levels Does a Lower Base Level Result in Improvement? Do you Actually have a Choice?Pacing in the Long Run Changes can be Necessary Slow DeteriorationNeeds Change over Time Final Thoughts Tasks Chapter 10: Two Kinds of Rest Introduction Repairing Rest Healing RestThe Difficulties Connected with Healing Rest Healing Rest as Active Rehabilitation Is it Possible to do too Little? Tasks Patient Experiences: Woman, 27 Years of Age Chapter 11: Three Stages – Three Management Strategies Introduction First Stage – The Unstable Stage The Second Stage – The Stabilising Stage The Third Stage – The Remission Stage Tasks Chapter 12: Challenges in Pacing IntroductionMental Overstimulation Reduced Feeling of Exhaustion Local Loss of Functioning Conclusion Tasks Chapter 13: Underactivity IntroductionWorsening of Symptoms while Resting Repairing RestHealing Rest Symptoms of Muscular Underactivity ContracturesLoss of Muscle Mass General Underactivity When the Body’s Signals are Distorted Symptoms of Recovery Tasks Part 3: Theme Chapters Chapter 14: Accepting Pacing IntroductionGetting Started Stopping Before you Crash Not a Quick FixAdjusting Activities Tackling Rest Frustration UncertaintyOther People Using Aids and Assistance It is not your Fault Managing Guilt Overactivity can give Emotional Instability Depression, Grief and Unstable Moods Pacing when you Feel Life is Tough Taking Care of yourself Emotionally Don’t Give Up! Reward YourselfYou are not the Illness Tasks Patient Experiences: Donna Hopkins, 48 Years Old Chapter 15: Learn to Interpret the Activity Diary IntroductionMicro-Level Interpretation Before the ActivityDuring the Activity Interpreting at the Intermediate Level Ida – Greater Variation Martin – Variation in Intensity Peter – Shorter Activity Periods Lena – Short and Long Rest Breaks Hanna Macro Level Pacing Tasks Chapter 16: Macro Level Interpretation IntroductionMaking a Graph Interpreting the Graph Overview of Unfortunate Patterns Unstable Activity Level Rollercoaster Pattern High Symptom LevelIncreasing Symptom Level, Unstable Activity Level A Decreasing Activity LevelFalse Improvement Sudden Increase High Peaks Overview of Good PatternsStabilising Improving SymptomsIncreasing Activity with Declining Symptom Level Increasing Activity with Stable Symptom Level Ideal Improvement Curve Tasks Chapter 17: Learning, School and Studies Introduction RightsTeaching must be Paced Find the Right Amount of Time for LessonsPlanning Think Energy ConservationSpecific Learning Difficulties Reading Difficulties Difficulties with Writing Difficulties with Mathematics Home Tuition Going to School Part-Time Energy Conservation at School ExamsOnline Studies Massive Open Online Courses Higher Education Tasks Chapter 18: Severe ME IntroductionGrasp the Severity – Be Drastic Mental Rest Very Narrow Limits Stabilising The First Signs of ImprovementMotivation Increases When the Process of Improvement is Well Under Way Communication with Professionals Do not give up Hope of Getting Better Tasks Chapter 19: Social Activities IntroductionCommunication Long-Distance Communication Telephone Conversations Visits Visiting OthersTrips out of the House Tasks Chapter 20: Big Events IntroductionAttitude Your Own Events When you are too Ill to take Part If you can Join the Event Tasks Chapter 21: Pacing of Movement Introduction Why People with ME cannot Exercise NormallyVery Restricted Limits Which ME Patients can do Exercises? How do you Plan for Exercise? Progressive Muscle Relaxation as Movement Which other Types of Movement are Suitable for People with ME? Group Training MassagePhysiotherapy Warning Signs Tasks Chapter 22: Background and Discussion Confusion of TermsDifferent Criteria Define Different Patient Groups Classic Pacing Books on Classic PacingClassic Pacing in Different Countries Classic Pacing in Norway The First Hybrid More about the Hybrids Is Vercoulen’s Model Correct? Discussion of Pacing Discussion of CBT And GET Type B CBT Discussion of Hybrid Programmes Conclusion Chapter 23: Tips for Energy Conservation ShoppingCleaning Meals Bathroom Freedom of MovementReading, Writing and Communication Sensory Sensitivity Appendix Relaxation Resources Downloads and PodcastsSmartphone Apps Pathfinder to Movement Resources for People with ME Qigong Basic Body Awareness TherapyThe Alexander Technique References Sources of Patient Quotes Worksheets 1-10 Worksheet 1 – Experimentation Sheet Worksheet 2 – Activity Scale for Simple Activity Diary Worksheet 3 – Simple Activity Diary Worksheet 4 – Detailed Activity Diary Worksheet 5 – Graph Sheet for Simple Activity Diary Worksheet 6 – Analysis Sheet Worksheet 7 – Priority Sheet Worksheet 8 – How to Make a Graph from a Detailed Activity Diary Worksheet 9 – Graph Sheet for Detailed Activity Diary Worksheet 10 – Example of an Invitation to a Virtual Party