I found a book called “Women Living with Multiple Sclerosis”. It’s written by Judith Lynn Nichols and her Online Group of MS Sisters.
The group met in an information area of the internet and evolved into a consistent group of twenty-plus women, of varying ages and lifestyles, but all with one thing in common, they all have Multiple Sclerosis.
They communicated online, and talk about everything related to coping with MS, a chronic and progressive disease. Each chapter of the book picks a specific aspect of living with MS and is drawn from the message-board conversations and other E-mail responses to the author’s request for information.
What I like about the book was the stark honesty of the women. There is much about this disease that is personal, and embarrassing, and the talk in the book is frank and open. I found comments in the book that verified some strange feelings I’d experienced and I found comfort in knowing it was related to my disease, that others shared the same symptoms.
The section on finding the correct neurologist was interesting, as doctors often overlook or disregard your feelings, or your struggle to get through the day. The foreword, by a neurologist was particularly enlightening, as he admits to being more understanding of his patients’ struggles after reading the book.
The book’s description of the symptoms is much better than the list of words you commonly see. I found the confirmation and the descriptions helped me to communicate with my own doctor.
I read the book once, then read it again and highlighted all the symptoms in the book that I experienced. Inside the cover I wrote the date, and highlighted it. Then a couple of years later I read it again, highlighting any new symptoms in another colour, again dating it in the inside cover. I used the words of these other women to document my own journey.
There’s a second book, published in 2000, “Living Beyond Multiple Sclerosis-A Women’s Guide”. I have read it also and added it to my MS library.
The books are an excellent read, written in the words of women just like me. Women struggling to come to terms with their disease and the changes it has made in their lives.