Published on July 23, 2015
There has been a healthy discussion following my most recent blog entry, and, once again, we have learned much from each other. It's important to remember, first of all, how much we have in common as we progress with our treatments. We are not alone.
As I noted in my previous blog, we are often dealing with a nebulous set of symptoms (fatigue, sweats, and decreased endurance) that lead to frustration over what we can no longer accomplish. One of our commenters referred to fatigue in particular as a "life-stealer,” which is the best description I've heard.
Can we take something away from this shared experience that we can use to help us cope with this wreckage? I believe we can.
First, we need to understand what symptoms really are: your body informing you that something is up. There is a real utility in this mechanism, for example, when pain occurs after you have broken your leg. Acutely, it tells you to avoid further injury and to seek stabilization of the fracture. Ongoing pain for weeks after the fracture reminds you to keep it immobilized so that it can heal. Unfortunately, once it has been definitively placed in fixation, the pain is no longer as helpful. In fact, pain can lead to excessive disability, preventing us from enjoying life, and necessitating the use of powerful medications that have their own nasty side effects. Symptoms are both useful and detrimental.
Looking at fatigue the same way, there are benefits and risks to ongoing fatigue. Certainly, fatigue can help you by reminding you to pace yourself and not place further demands on your taxed body. However, fatigue can rob you of a great deal of joy in your life. I have noted how frustrating and dismaying it is to simply not be able to perform. Some of our blog responders have said the same thing. There is a sense of guilt over the impact of this disease on the patient’s family, particularly children. How to tell your son that you just don’t have the energy to get to the park?
Everyone has their way of coping that may work for them. Some days, I haven’t the juice to read the mail. But I have found some solace from an unexpected source—I exercise. Some responders have noted that exercising on one day can really make their subsequent days even worse. My own experience has been that exercise often increases my energy level that day and makes my subsequent day no worse than I believe it would have been. When I exercise it reminds me of what I can do, and makes me feel less like a victim. I often sleep better that night, sweats or not.
Of course, one person's exercise is another person's heart attack. What I mean by exercise can mean a walk around the block or going to the mall for essentials, like chocolate and new slippers. If at the end of a session you find yourself asking, "I did little. What have I accomplished?" The answer is: more than you would have done if you had not done anything. There is no downside here, especially if you're already fatigued. Whatever you choose to do should be something you enjoy. One of my buds at the clinic has a regular gig of driving his car down to the beach and surf fishing for an hour or two. It may not sound like much, but he gets out, has to carry some light tackle a few hundred yards, and sit on a campstool for a while. Not exactly a triathlon but plenty for him. As an added bonus, when he recently got a sinus infection he knew immediately, because he was really struggling with what had become his new routine. He got into the clinic and got help immediately.
A major concern with pushing past your symptoms is that you may hurt yourself or further your disease by exercising. Everyone's disease is different, and so it is impossible to say one way or the other. Between your ears, however, where your perceptions are formed, you have a major opportunity. Stress is often linked to our ability to control our environment, and in the case of disease, to find a way to turn a setback into an opportunity. If you look back upon an event in your life and see nothing but uncontrolled loss, you're not doing yourself any favors. Find a way to take your victimhood and turn it into a struggle and then an opportunity. You may find yourself eating better, exercising more—and appreciating life more—after your diagnosis than before.
I am no Pollyanna here. Loss is a part of life, but we can control how that loss affects us and how that, in turn, affects the ones we love. These symptoms can rob us of our joy for life if we permit them to. Exercise in even a small amount has great benefits. Next time, we can elaborate on this and talk about other coping strategies.
What are your CLL symptoms? Let me know in the comments section what steps you take to manage your symptoms, and how you have met the challenge and found new opportunities.
Until then, be well!
Randall Goskowicz, MD, CLL Patient
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