So I have been on the prowl for decent books relating to MS, but it was during an internet search on Dr. Stanley Cohan (my soon to be specialist) that I stumbled upon a book called MS and Your Feelings, published in 2007, which he wrote a foreword for. It turns out the author Allison Shadday is a patient of Dr. Cohan, and it just so happens that she's a licensed clinical social worker. After having been diagnosed, she quit working as a home health social worker, and opened up shop as a practicing counselor for those living with chronic illnesses. What I love about this is that not only does Allison know what it means and how it feels to live with MS, but she deals day in and day out with others who are part of the same club.
This book is specifically aimed at helping us deal with the emotional aspects that seem to crop up, sometimes suddenly, with this disease. Not only do the emotional issues come from simply dealing with our day to day symptoms or perhaps a current exacerbation, but a multitude of various factors play into our emotional well being. Shadday does well to include some of the less discussed issues that play into how we really "feel" as well as the biggies that aren't so uncommon among us, like anxiety and depression.
Shadday walks us through everything from coming to terms with a diagnosis, to recognizing and accepting the grieving process. Each chapter is designed to handle a specific issue which relates to how we feel. Along with delving into the various issues that cause our feelings to go haywire, she also includes a total of 13 journal exercises, some of which are more like questionnaires. You may not need to use all of them while you read the book, but it's nice to know they'll be there if you need them in the future. The exercises on our personal "MS experience" as well as the "grief questionnaire" were both super helpful for me. Getting all this stuff out was something that I really needed to do, and the questions she asks are spot on for helping us work through some bottled up junk.
If you are someone who finds the words of others dealing with MS comforting, or in hearing their fears/concerns, then there's a little of this in here for you as well. On top of this, there are also some tips for ways of managing stress and anxiety. Some of these I will pass on for now, such as biofeedback for example, although there was one little tip which proved helpful for me, especially after having been so recently diagnosed. In chapter six called Stress and MS: How to Soothe Yourself, Shadday examples one of her clients who had used the idea of thought containment. Although this may sound pretty simple, and in fact it is, she would use an imaginary box each night, to contain all of her thoughts which were swimming around as soon as her head hit the pillow. For me, the evenings were the absolute worst (and sometimes still are) following my diagnosis. I would lay in bed wanting nothing more than to just sleep, but instead my mind would begin racing with various "what if" scenarios. So I decided to try this whole visualizing/thought containment advice, and low and behold, it actually worked. I would envision this box, and then I would surround it with all the random thoughts I was having on that particular night, and imagine putting them all away. I would lock the box, and put my thoughts away until the next day. This way I could deal with them at a time when I wasn't attempting sweet slumber. So I haven't replaced my occasional evening vodka tonics with thought replacement, but on those nights when I'm particularly anxious, this is a tip I make good use of.
One of my favorite aspects of the book came in Chapter seven, called Identity Crisis: Building Self-Esteem. Shadday writes in regard to the saying "you are not your MS", "These words are meant to provide encouragement, but they can ring false. The truth is that MS can seriously erode one's sense of self. It forces us to question-sometimes daily, sometimes hourly-who we are and what we're capable of; the answer often varies." This was pretty awesome for me, because at times it seems like we can go around singing until the cows come home about how "we have MS, it doesn't have us", but seriously, just "having" MS makes us feel different, I know it does this to me. There have been times where I have thought about the day I found out I had MS, and I have wished I could just go back in time, to have one more day where I didn't know. The saying "ignorance is bliss" has taken on a whole new meaning to me. My sense of self has changed in the last three months. Going from working and taking full time classes just one year ago, to having days where a few hours of shopping leaves me feeling like a senior citizen trapped in "perfectly functional body" has made me question my worth at times. Cognitive issues have also left me feeling... well, dumb. Shadday does not fail to include both fatigue and cognitive issues as just a few that can leave our perhaps once positive, or at least not quite as faltering self-image, in the dust.
Another important aspect of this book came for me in chapter eight, called Good Grief: Recognizing the grieving process. Well, I had quite a few enlightening moments while reading this chapter, but one of the points that really hit home for me was in regards to us gaining something from our losses. Although we've been diagnosed with this disease that's going to plague us for the rest of our lives (a bit dramatic, yes) we are still able to sort of gain something from it. After discussing the ways in which a fellow MS'er had found the good in something bad, Shadday wrote, "This isn't to say that having a chronic disease makes everyone's life better. It makes it different and painful and difficult, but once we beat our chests and shed our tears over what we've lost, we must begin to actively search out what we might gain." Even though I don't always want to feel like I have to be "making the best of it", unfortunately, there isn't really any other option. I know that I don't want to be the "sick" person too busy wallowing in their own misery to do anything of importance on this planet.
The great thing about this book, is that it's information we can actually use. It isn't simply a bunch of doctor schpeel or new age mumbo jumbo (which I sometimes secretly love), but it's real, useful information. I am thankful I found this book when I did. Granted, I don't know how differently I'd be handling things had I not found it, but I know that it has proven useful to me in more ways than one. I could sing the praises of this book for days, but I will stop and simply say, READ IT. It's one of the good ones.
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