From the numerous posts here, I know that we all have days where we may feel depressed, overwhelmed, anxious, scared or just tired of having MAV (and this includes me.) This is not uncommon and is an area where we can support one another. However, for those of you who are interested in reading about ways of coping, I would like to suggest the following book. I am in no way trying to sell-promote it, but rather, have begun reading it (about 1/4 of the way in) and have found it to be not only interesting, but useful. The book deals with many types of chronic illnesses and provides suggestions on how to cope and deal with it (including your family members). There are examples/stories from people that I know some here will totally relate to (i.e.: no one understands because they can’t see my illness; I feel so helpless when I can’t live my normal life.) The authors themselves are psychologists who both have chronic illnesses - one with MS. While some of the illnesses are very different than MAV, many of issues and suggestions are applicable. The book first came out in the 90’s and a second edition in 2000. It is entitled, “Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness” by Paul J. Donoghue and Mary Elizabeth Siegel. You can find this book in libraries and in bookstores (such as amazon).
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While it may not have all the answers and be lacking in some areas, I do feel that some here may find this book beneficial. Just thought you might want to know. Best, Bonnie
PS> BTW, the one thing that should especially make you feel better is knowing that our condition (MAV) is likely to get better over time and is more treatable than some of the chronic illnesses noted in this book. I for one actually found myself saying, “Well at least I don’t have THAT” or “I’m glad I can still do…”
Here are some of the reviews about it:
An invaluable source of help and comfort to those who suffer from invisible chronic illness and to their caregivers and friends. – Katharina Dalton, M.D.
How many times have you said to yourself, ‘No one can understand how I feel unless they’ve experienced it themselves?’ Because the authors of this book each have experienced an ‘Invisible Chronic Illness’ or ICI, they are able to express feelings that you have more than likely experienced but have not been able to put into words. This book validates your emotions and then helps you to express them in constructive ways. – Network
One of the most helpful books about chronic illness that I ever run across…This book is captivating, informative, and sensitive. – Allergy Aware
This self-help book by two Ph.D. psychologists (one of whom suffers from multiple sclerosis) is not new, just new to me, and what a discovery! It is a moving explication of what it means to live with an invisible chronic illness–ICI. If you have patients, acquaintances or if you yourself suffer from an ICI you can find valuable advice and guidance in this book. – Ostomy/Wound Management