Work/School When I feel a little bit better thanks to sleeping half of my day and reading books all day long, I get cocky and start doing things I’ve wanted to do, like playing games and hanging out with friends and stuff. There are major financial consequences to reducing your hours or leaving the workforce. When you plan your day and live your plan, your symptoms are likely to come under better control and you may be tempted to do more. Those who are minimally affected by CFS or fibromyalgia may be able to continue working full-time, accommodating to their illness by resting on weekends or reducing their social life. What a difference that makes! I have been resting in between activities, sometimes only for five minutes. For example, one person noticed that he often returns to a normal activity level too soon after a cold or flu. How to Succeed at Pacing I have a window between 8 and 11 in the morning that is best for most activity, both mental and physical. My sleep has been more refreshing and even my mood has improved. After a career as a corporate executive and management consultant, JoWynn Johns developed symptoms of CFS in 1991. Pacing offers an alternative to the repeated cycles of push and crash, a way to flatten out the chronic illness roller coaster. But she decided to experiment with studying in the afternoon. My symptoms and pain have decreased and I feel more "in control." Should you stay in your current job despite the suffering or should you make some kind of change? At the same time, you may want to be more active than usual or feel pressured by others to be more active, a second potential cause for a relapse. Over time, she significantly increased the percentage of good days in each month from about 35% in 1996 to 80% and more in 1999. Some people create a series of rules for specific circumstances. All seemed expensive to find one that was accurate and had an alarm. It can be tempting to skip the rest when you are feeling good. He used the hours freed up by his part-time schedule for self-care. I try resting but it's never enough it seems. At the beginning of our course, she was resting six hours during the day, taking two naps of three hours each. He also tried various alternative treatments, but concluded that none of "the remedies, medicines or food supplements I tried helped me one bit." This chapter, which is based on the idea that you can improve your life if you adjust to your limits, describes many different strategies for successful adaptation. For guidelines and sample daily and weekly schedules, see Chapter 7. The last chapter outlined several ways to define the limits imposed by your illness. None has made the slightest difference in my well-being. The same principle can be applied over longer periods of time. For a week or so before, I double my normal daily rest time. After studying her journal and notes, she concluded that she could have good days if she met six conditions: spending 12 hours a day in bed, getting seven hours of sleep, staying at home, restricting her daily activity, working on the computer no more than an hour at a time and having no visitors or long phone conversations. But doing too much intensifies their symptoms and they crash. For those items that you can't do or can't do in the same way as before, try thinking in terms of delegating, simplifying and eliminating. JoWynn was severely restricted by her illness, but improved over a period of years by living within her energy envelope. The 70% rule helpes me. Being off work can allow you to focus on healing and may help you clarify whether you can work and, if so, how much. On the other end, some people are so severely ill that they cannot work. Take a task like chopping vegetables. Some have developed home-based businesses, especially ones that allowed them flexible schedules to accommodate the ups and downs of their illness. Living by a set of personal rules means not having to think and also reduces the power of spontaneity to overwhelm good judgment. With pacing, you can live your life according to a plan, rather than in response to symptoms, so you have a sense of managing the illness, rather than the illness controlling you. It took me quite a while, but I finally realized the toll that travel and driving have on me. Work issues can be among the most difficult to sort out. Before the course, I only thought I was resting; now I know that rest means lying down with my eyes closed (without television or the telephone).". Integrating scheduled rest into your life is another way to control symptoms and to bring greater predictability. Patients with neurally mediated hypotension (NMH) are sensitive to standing, since they are subject to sudden drops in blood pressure that leave them feeling faint. When I start feeling worse, I've gone way too far. Later, she was able to expand her work periods from four to eight a day. A related approach is, quoting the title of an article on our website, to develop a set of overall "Personal Guidelines for Managing Chronic Illness." Learn to listen to your body. For a discussion of how one person resolved her dilemmas about work, read Kristin Scherger's article on our site titled Expanding My Envelope: How I Balanced Work and CFIDS." Also, you can use your health log as a positive motivator, providing proof that staying inside your limits makes a difference. In the first two years, a period that she calls "keeping on with my life," she continued to live a busy life "despite feeling awful." References For example, family members might share in meal preparation or grocery shopping, or a cleaning service could clean your house. § Pacing can work for … His final outcome differed as well; he was able to recover and return to full-time work, travel and an active social life. For more, see the Weekly Schedule section of Chapter 7. If I just go at it, I get all the symptoms and I am messed up for days.For me my eyes go a bit wonky, breathing is harder, before I get muscle weakness and the absolute need to lay down, if I keep going beyond that I have trouble speaking, moving at all, and breathing can be an absolute effort, it isn't automatic anymore. The rest I will discuss in this section is a preventive measure. With pacing, you can live your life according to a plan, rather than in response to symptoms, so you have a sense of managing your illness, rather than illness controlling you. Resting according to a fixed schedule, not just when you feel sick or tired, is part of a shift from living in response to symptoms to living a planned life. But, for some patients, mornings are the best times of day; for others, evenings. What is my rule for this situation? I think the obnoxious family/friends/have to tell lies to reduce stress still causes me stress and is very upsetting, but not sure this actually causes PEM by itself in my case, but maybe I need to track a bit better. I'll outline two, but you might feel more comfortable with another approach. I recommend that you establish time limits for each activity, because your body may not give you a signal at the time you have gone outside your limit. Kristin's attempts failed until she found a situation her body could tolerate. Over a period of two months, she reduced her total rest time by an hour and a half. Although he continued to be quite symptomatic, he was successful in working at that level while improving very gradually. You may be able to increase the amount you get done, without spending more time or intensifying your symptoms, by changing when you do things. Dean Anderson wrote that living successfully with Chronic Fatigue Syndrome required that he adhere to a strict regimen "without periodically lapsing." If that occurs, try using a relaxation technique or meditation practice during your rest. (Both wrote articles for the CFIDS Chronicle, the magazine of the CFIDS Association of America. We view them as activities. Some patients whose tolerance for standing is low, who are sensitive to sensory input or both find shopping easier if they use a scooter or motorized cart.