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Eunice Beck, RN, on Coping with Flares and Mental "Hot Buttons"

  [ 280 votes ]   [ Discuss This Article ] • July 7, 2004

Dear Friends,

I’m having an invisible spell again, or at least my disease is. Let me try to explain. In the first place, I’m in a major flare, which isn’t helping my mental health, as we try to get my meds adjusted to give me at least some control over my life. Because of my increased pain level, more friends and family have heard my expressions of discomfort or seen my difficulty getting around. Because I get exactly the type of response I’m talking about, I generally try not say too much unless it is to close family and friends who I think have some grasp what it is like having this disease. Even one of them will surprise me once in a while, showing me how little they really understand.

The helpfulness I am hearing right now is something I have heard off and on throughout my life, just in a newer form. You see, I have been blessed with being a “big” person for my entire life. The only time I met the “standards” for weight was the day I was born. Oh, yeah, and the time I was 7 (50+ years ago!) and my Mom, trying to do what was best for me, took me to a “diet” doctor, who fed me lots of little pills and very little food. The weight I lost was actually only hiding, and was easily found as soon as we stopped seeing that doctor. I’m sure some of you can sympathize. So, needless to say, I have, on my own, and due to the suggestion (read that pressure) of friends or family, been on every diet and healthy eating plan that’s out there, including those in which you are allowed to participate after you spend a substantial amount of your monthly income. I’m not saying none of them have been successful, at least for the duration of my involvement with them, and sometimes a bit longer. But as when I was 7 years old, the weight was only hiding, and sometimes brought friends when it came back. Please excuse all the jokes and smart aleck responses. I have learned to use them and others to protect myself from all my well meaning and concerned “helpers.”

It took me many years to make peace with myself on this subject. It helped me learn to let all the comments roll off like water off a duck. It did my mental health a world of good. However, my inner peace was not to be long lived. About the time I was finally dealing with this “devil” in my life (I’m sure you have your “devils” too, just different ones), along came the surgical procedures for weight loss, from the early major surgery of gastric bypass, to the less invasive procedures which are done now. I have had a number of friends and some family who have had the procedure with varying levels of success, usually dependent of their behavior and following the diet/exercise requirements. (Gee, I think diet changes and exercise are what have always been recommended for weight loss?!) And there can be problems.

My brother, who has also fought off the pounds for most of his life, chose to have the procedure as “maintenance,” based on the fact of our father’s early death from heart disease. Instead, my brother developed blood clots in his lungs, a side effect which is not unusual. He almost died from the complication. While he is happy with the weight loss, he recognizes it almost took his life early, in the process of trying to lengthen his life. Our country is so oriented to a “quick fix” for everything. We don’t have “time” to do all those things that are necessary in our lives. And the weight loss surgery has been sold to society as a “quick fix.” I am back to all my helpful friends, and family members, encouraging me to have the surgery. They are just sure that all my symptoms and pain will go away if I “just lose some weight.” While I’m sure that their comments are made out of concern for me, they are proof to me that they don’t understand Fibromyalgia.

Unfortunately, their helpful suggestions are painful for me in two ways. First, it brings up all the painful experiences I had in my life dealing with my weight issues, and there are many. Secondly, I know that the basis of the disease is not my weight, but changes in my nervous and immune system. A major surgery, even at the less invasive level that it requires today, is a major upset, and threat to both of those systems. A threat which includes the possibility that the Fibromyalgia will get worse instead of better. Thankfully, my primary doctor understands this, and has never suggested this “fix,” although losing some weight would be helpful for FM and some other problems I have. He knows I am bright enough to have figured this out for myself. In fact, I’m relatively certain he would discourage consideration of this surgery. While there is a chance it might help, there is just as great a chance for me that it would do harm.

My mental health button is my weight. I’m sure others of you have other “buttons” that well meaning members of your life manage to push every so often. I hope that you understand your disease and how to take care of yourself well enough that you can do what is best for you in spite of all the loving advice you may get. I’m having a bit of difficulty doing that right now, and I thank you, my readers for allowing me to vent. We all need it once in a while. Feel free to return the favor via my email address! And, I am going to do something else I know I need to do to take care of me. My flare is beginning to turn around, and my partner is better for the time being so we have given ourselves the wonderful experience of a cruise and train adventure to Alaska. So I am going to thank you in advance for the fact that there will be no more columns for a couple of months. I know how crazy the planning side is becoming already, and I will definitely need some recovery time even though it is a cruise. I’m looking forward to it, and yet I’m scared of how I will be able to manage it. But I know I will and it will be an experience we will both always remember. So, I’m taking the summer off, but I will be back in the fall, hopefully refreshed and full of new things to talk about.

Take care and be well. Yours in health, Eunice

I welcome your comments and questions at: My articles and email responses are not being offered as those of a health care provider. The information and opinions included are intended to give you some information about your disease. It is very important that you empower yourself with knowledge and participate in your own search for care. Any advice given is not intended to take the place of advice of your physician or mental health care provider. Always follow your physician's advice, even if contradicted by something written here. You and your physician know your situation far better than I do. Thank you and be well. Eunice

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