Happy New Year!! May 2009 find all of us healthy, wealthy and wise! (Ain't that the truth.) I have been having a really rough past few days. Typically my right side becomes numb, but the last few days both arms and legs have been going numb. It is so weird and scary! I can barely get off the couch. I wanted to brush my teeth and shower yesterday. I felt that if I couldn't be productive, the least I could do was be clean! When I was attempting to come back down the stairs, I told Dave that normally when my legs feel weak, I go slowly and use my hands to brace myself. However, since they were numb too, I felt like I had no safety net...I felt like a floating torso! Anyways, so tired! I was a little foggy with my mom shopping last week. I kept misplacing things (only in my mind) but they were right next to me or actually in my hand. It is all still unnerving, but I am trying to come to grips with this CIS/MS...slowly, but surely. <>
My mom lent me a book she bought called "Women Living with Multiple Sclerosis" by Judith Lynn Nichols. It was really a great start for me to look at as I try and get some information. This book was actually created out of an online chat group of about 20 friends with MS. They all met in an info section of an MS website. They became friends and went off to form their own friendly support group. The author then compiled their emails to each other into different subjects and created this book. It is really a great tool because you get so many different prospectives and since no one's experience with MS is the same you are sure to find someone similar to yourself.<>
I highly recommend this book to anyone who is looking for answers or understanding about what they are going thru or what to possibly expect. I would like to quote a few sections I liked in this blog to share with all of you. First off I found it very interesting that several people are diagnosed with "possible/probable MS". That's me! Unfortunately, several of these woman have that label for 10-20 years. In my favor is part of the reason, for some of them, is there was no MRI before, but others are CIS like me.<>
My first indication that I would find comfort in this book was reading about a 28 year old woman who had finally been told she wasn't crazy and her neurological exam was abnormal. She and her husband were happy. This followed: "Is this possible? A young wife and mother suspects she has a catastrophic medical problem and she rejoices when a doctor tells her she's probably right? If (she) is experiencing the first signs and symptoms of (MS), it's not only possible, it's very likely. ...many of us have concluded that anything is better than those first days or months or years with (MS), when there are no answers to explain the strange happenings within our bodies."<>
They even helped with validation on the disorientation and the forgetfulness, they call them "flutters": "Set timers to remind ourselves that we have food in the oven, ... children to be picked up from school, ... or anything else that requires our attention at a particular moment. Then we have to write notes to remind ourselves why we set the timers." I can totally relate to that, I forget things almost instantly, especially when I'm really tired or pushing too hard.<>
Another chapter called "Tired of Being Tired" (love the title!) refers to just what you would think it would in this single MS symptom. (They refer to MS in this book as the MonSter.) One woman is venting about her frustrations over the littlest thing tiring her out, like getting dressed and needing a nap after. I like how she ends her post: "I will not let this MonSter conquer me (even if I am too tired to remember where I am or why I am there)." I am right there with her. I am not giving up, but still affected.<>
Lastly, one girl ended one of her posts with some advice for people newly diagnosed. "MS does not affect all people in the same way. Nor are the side effects of different medications or treatments the same for all of us." Another said, " I think the biggest help is to realize we are not alone in this, and to allow others to minister to us in all ways, just as we continue to give to others." I think that was the biggest thing I got out of this book. I am not alone. These women gave me definitions to what I was feeling, answers to my questions and validation to the symptoms I was expereincing. That was definitely a great read for me, and a wonderful meeting of the (MS) minds...