The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Recommended book to help you deal with MAV/chronic illness


#1

Hi all,

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).

(NB from admin: this image links to a product this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)

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:

Review
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


#2

Bonnie - thank you so much. I will definitely look into getting that book. I need all the help coping that I could get. I had a terrible day. I was in a car for over 2 hrs to travel from NY to Connecticut to look at houses (I am moving in a few months). I feel so much better in a car, but the car ride makes my symptoms even worse as soon as I get out of the car. AT the end of the day, I went out for dinner with my husband and parents (which I hardly ever do). It was dreadful. The person who seated us must have thought something was seriously wrong with me. It took my husband and mother to hold me up to get to our seat. I always feel like i’m on a boat when walking, but the “boat” was moving more vigorously than ever. By the end of the meal, on my trip to the restroom, I was in tears. I went to this same restaurant over 2 years ago when I was “normal,” and miss that time. I think the steroids have made me feel ever worst. I am stopping them today. I am sorry to ramble. Just been such a tough day. I thank you for the book recommendation.
Lisa


#3

Hi Lisa,

It really seems like a lot of us are getting smashed this weekend. I’ve been getting raked over the coals since Friday night. Dizzy all day yesterday and this feeling of doom all the time. Another lousy night’s sleep and more dizziness now and more doom. I just cancelled my mountain getaway because of it. I have to drive a car now for a little bit but dread the fallout from that. Luckily we’re only going south about 25 km. I’ll get my GF to drive most of it. It’s so bloody incapacitating when it’s all on. What is it with this weekend? :frowning:

BC - thanks for the book info. I’ll definitely check it out too; it looks really good. Promise to get an email off to you tonight …

Scott


#4

Not sure the connection is with this weekend , Friday was a bad day for me but I thought it was due to the storms , really bad ones we had in the area. Yesterday was better it was only overcast and cloudy. But I wonder if it could be spring coming in and things that are blooming that are making the symptoms worse. :roll:

Or just a change in the atmosphere somehow that is affecting us all. Today it is supposed to be cloudy so we will see how it goes.

I am supposed to go across town to pick up something this afternoon, I think I will have my husband go with me …

I hope we all have a better week ahead. And if anyone figures this out …let us know.


#5

I think for me, my worsening symptoms were from the trial of steroids, which I stopped today. I am always so sick - I couldn’t believe that things could get worse. But, they did today. On top of the usual dizziness, I woke up today with spinning vertigo and extreme lightheadedness. I do not usual suffer from any spinning. I am praying that it is just from the steroids, and not a further regression. It is so hard for me to look at the computer, but wanted to check in quickly. I really hope we all get better soon.


#6

Ordered it. Looking forward to reading it.