From First Signs, To Diagnosis, To Living With Chronic Illness.
What Multiple Sclerosis Is, How It Manifests Itself And What Can
And (Unfortunately) Cannot Be Done About It.
MS & ME
will be available late
& ME (What
Book is About)
My name is Paul
Lima. I have MS. I have had Multiple
since 1998, for over twenty years as of the writing of this book. There
have been years when it has pretty much knocked me on my butt. Years
when it has given me strange and bizarre symptoms. Years when it has
disappeared to wherever MS goes when those with Relapsing-Remitting MS
go into remission and, for the last four years, it has kept me from
doing all but walking my dog, teaching some online writing courses for
the University of Toronto School of Continuing Studies and mostly
sitting on my rear.
Currently, I have chronic headaches 24/7. They are relentless. Plus I
have some balance issues, weakness in my legs and some fatigue. But
much more on all of that later.
Don't get me wrong. I am glad I can do what I can do. I know people
with MS who are in better physical shape than I am, but they have
what brain fog (or what we call
brain farts when we find our sense
of humor, which we do on occasion) or cognitive issues. If more than
two people are talking, they find it difficult to focus. Other people
that I know with MS have to use walkers to get around. I use a cane,
but can walk without it, although I like the feeling of balance that it
gives me. And still others with MS are confined to wheelchairs and need
personal assistants to put them to bed and get them back into their
chairs in the mornings.
But again, more on all of that later.
I have been a freelance writer, author and writing
trainer for the last thirty years. (If
you want to know more about me, and what I do--or try to do as I deal
with my MS--go to my website, paullima.com.)
But this book isn't about who I am when I was (or am, or will
be--fingers crossed) a healthier version of me. It's about me and my
MS. From my first inklings of the illness, or of the fact that
something strange was going on, to the diagnosis, to a declaration of
health, to a re-diagnosis, to learning how to accept, understand and
live with this chronic disease known as MS. And it's about stuff beyond
me, that those of us who have MS in its many and
varied manifestations have to deal with.
I started this book because, quite frankly, I was bored. I've written a
dozen books on business, promotional and article writing and the
business of freelance writing (paullima.com/books)
and have written thousands of newspaper and magazine articles and
taught hundreds of writing classes and writing workshops. However, my
MS has limited my teaching and training to online sessions--no more
in-person training for me--and I have difficulty focusing on writing
tasks that are not of my own making. Then I joined several online MS
support forums. I was surprised, even shocked, at how naïve
of the questions were and how frightened many of the newly diagnosed
people asking them seemed to be. And then it occurred to me, after
twenty years of dealing with this disease, I was an MS veteran. Twenty
years ago, my questions were just as naive. I was just as frightened.
It's not that I now have all the answers. Not by a long shot. Nobody
seems to have them. Or that I am now a big, brave guy! Not at all. But
I am no longer new to MS, have a bit more understanding of this bizarre
disease, and am a little more laid back about it. Don't get me wrong.
MS still scares the crap out of me. I've just learned how to breathe
and remain calm in the face of my fear--most of the time.
While reading what those newly diagnosed with MS were
experiencing and asking, the project took on a whole new meaning and
are people, too many people, newly diagnosed with MS who are dazed and
confused by their diagnosis. They are rattled and depressed
by the diagnosis, as I was twenty years ago. (I was a freaking mess!
Just ask my wife.)
These people, and their families and friends, need information. Yes,
their doctors have information, but they can only dispense information
in twenty minute sessions once or twice a year. Unfortunately, much of
it, if you are newly diagnosed, goes in one ear and out the other and
leaves you with more questions than answers. Not the fault of the
doctors. It's difficult to absorb information when you've been given a
sentence (formally called a diagnosis) that you really don't understand
and that scares the crap out of you.
Yes, there is a lot of information online. And I encourage people with
MS, and their family members and caregivers, to read about MS on
legitimate sources (see my list of online resources at the end of this
book). I also encourage you to join in-person support groups (check
with local chapters of MS societies for information about support
groups in your area) and online support groups such as Facebook MS
support groups or myMSteam,
social network for those living with MS. At the same time, I suddenly
felt there was room, maybe even a need, for a book that cataloged one
person's twenty year struggle with MS.
While the disease is different for each of us with it, there is
something to be learned from reading about another person's coming to
terms with it. In addition to sharing my experiences, I will share some
common knowledge about MS and will share what I have learned from
many others who have MS.
With all of that in mind, I'd like to say enjoy the book,
but somehow that
feels disingenuous. I mean how can one enjoy a book about a sick person?
If you have MS, I hope that it is not severe and that this book gives
you some sense of how you might mentally cope with it. (I am not
qualified to help you medically cope with this disease but I will tell
you what some people are doing to deal with their disease and various
symptoms). And I hope that if you are caring for someone with MS, or
with someone with any chronic illness, you will learn that you are
caring for someone who is dealing as best they can with a misfortune
that is no fault of their own. I hope that you begin to understand that
in a world that seems to go out of its way to value so-called normal,
and too often is in denial about so-called abnormal, that illness--be
it physical, mental or emotional--is just as normal as the rising and
And what the heck, I hope you enjoy the book!
| Book availability
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notification when the book is available?
Send an email
with the subject line MS & ME
what's in the book?
Take a look at the book's contents:
(What this Book is About)
/ What Is &
Why Is MS (Things We Know; Things We Don't)
/ First Inklings
(I Feel Funny Oh So Funny)
/ Doctors &
Diagnosis (Your Guess Is As Good As Mine)
/ Symptoms and
Side Effects (Tastes Like Crap)
/ MS and Pain:
Physical & Emotional (It Hurts. It Really Freaking
/ You Don't Look
Sick (You Look Marvelous!)
/ To Medicate or
Not To Medicate (Grazing in the Grass. Is it a Gas?)
/ Diet &
Exercise (Chocolate & Dog Walking)
/ Family &
Friends (I Have Both; I'm Lucky That Way)
/ Life No Longer
As I Knew It (It May Not Have Been Perfect, But I
/ Final Thoughts
(MS is Not a Death Sentence)
/ Epilogue (The
Author Gets Kind of Existential)
/ Brief List of
Online MS Resources (Of Course You Can Always Just
Want to receive an email
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& ME book notice to firstname.lastname@example.org.
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