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. We do not consider such things as watching TV or reading to be rest. 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. Many large stores have such devices, which they make available for free. Pacing is incredibly frustrating and you'll get it wrong a lot and find yourself back at the beginning but you will find over time it gets easier. We call planned rests of this sort pre-emptive rest. Then, she gradually altered her life to fit within the limits she had discovered. This is a post I wrote especially for ProHealth’s Inspirational Corner and first appeared there about 2 months ago. He got out of the office for lunch and spent part of his lunch period resting. First, she began to listen to her body, asking what it needed. If you find your limits through experimentation, you can avoid crashing by limiting your activity to a length of time you have found to be safe. Dean Anderson wrote that living successfully with Chronic Fatigue Syndrome required that he adhere to a strict regimen "without periodically lapsing." She also lists putting the needs of others before her own. That use of rest is an effective strategy for recovering from relapses. § Pacing can work for … One person who tried this was a woman who became tired with almost any exertion. For another comprehensive treatment of pacing, see the. One student said, "Instead of having to ask whether something is or is not within my envelope, I have tried to stick to a schedule I know is safe." You may also make your special event easier if you delegate. But doing too much intensifies their symptoms and they crash. Remember that the goal is to have a consistent level of activity, rather than to push hard when feeling well, then crash when symptoms intensify. He used the hours freed up by his part-time schedule for self-care. She completed her translations in five months. Making sure I have a short break or two in the day where my body and mind are completely relaxed and at ease is really beneficial for increasing the amount of activity I can tolerate and how I feel. For us, rest means lying down with your eyes closed in a quiet place. Her switch to an administrative position enabled her to achieve stability and expand her energy envelope. Sources of help include family and friends, hiring someone, or using community resources, such as religious groups or service clubs. 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. The only things that make me feel better and keep me relatively stabilized and able to achieve my priorities are scheduled resting and pacing.". She rates herself at 60 most of the time and sometimes higher. A healthy person might get $100, but the average person with CFS or FM is likely to have something like $25. As described in the section on rest above, rest should be integrated into your day as a regular part of your schedule. 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. You will smooth out your life if you make rest consistent, setting aside certain times of day for rests of certain lengths of time. Finally, adjust your expectations. We feel good we do too much, then we crash for days. If you find large groups difficult, try getting together with only a few people. ", A central element was defining a safe level of work. I know some people say they crash immediately, or crash from mental stimulation, but for me it's usually physical activity, crash ~30 hours later & it's 1/10 or 1/20 of what I feel like I can do. Over time, she significantly increased the percentage of good days in each month from about 35% in 1996 to 80% and more in 1999. The same principle can be applied over longer periods of time. Delegating means finding someone else to do a task that you used to do. She began by asking herself what it would mean to have a "good day." She found that she had good mental stamina for several hours if she started the afternoon with a brief rest. I can say to myself, "I know you want to do this and people are pressuring you, but you decided before you came that this wouldn't fit into your envelope.". Here's how one student described her planning. Another strategy is to plan your trip in great detail. My sleep has been more refreshing and even my mood has improved. There is nothing in our once healthy previous lives that can prepare us for what’s involved in getting good at pacing. Develop Personal Rules. She makes sure that she doesn't take on any extra activities for a few days before and a few days after her trip. 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." Here's one student's description: Making a commitment to myself to stay within a safe activity level has helped me resist the temptation to do too much when on the road. He sought out assignments away from the home office of his company, so that he could have better control over his daily schedule. For it to end that is. He also tried various alternative treatments, but concluded that none of "the remedies, medicines or food supplements I tried helped me one bit." Press question mark to learn the rest of the keyboard shortcuts. At least in the way that the very limited energy of illnesses like ME/CFS, Fibromyalgia and Lyme disease demands. Through counseling, she recognized that she wasn't improving and that CFIDS was an ongoing, not a temporary, part of her life. I accommodated by adding more rest: before, during and after trips. More importantly, he developed a new attitude toward exercise. They found their limits by listening to their bodies, by experimenting with different activity levels, and by keeping detailed records. The site may not work properly if you don't, If you do not update your browser, we suggest you visit, Press J to jump to the feed. An example of the former is given in Eunice Beck's article, titled Making a NOT TO DO List. JoWynn was severely restricted by her illness, but improved over a period of years by living within her energy envelope. Deciding when to apply for disability is complicated. 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).". Third, decide what activities you will keep and which ones will be modified or dropped. Resting the Mind
Kristin's story illustrates two common experiences of patients' struggle to balance illness and work. Oh, and in case it helps anyone else. Second, add up the times and compare them with the limits you established by using the CFS & Fibromyalgia Rating Scale or the envelope exercise in the previous chapter. § I’m too busy to pace § How can I pace with kids to look after? A member of one of our groups gave an example. Consider staying in a hotel instead of with relatives for privacy and easier control over your activity level. Short Activity Periods & Spreading Activity
You may be able to get more done, avoid symptoms or both by using devices to help you. Pacing offers an alternative, a way to live a more stable and predictable life by knowing and staying within limits. Setting Limits
Bobbie Brown was able to do this, as described earlier in the chapter. They schedule only a certain number of the most taxing activities a day and make sure to switch frequently among different types. Some patients use this idea to move from one type of activity to another, for example switching between physical, mental and social activities. For me, having CFS is like having diabetes: it's a chronic condition that can be managed and that requires lifestyle adaptations. She also makes sure that she paces herself carefully during the trip, resting during her non-active times. 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. Take a task like chopping vegetables. I also wanted concrete evidence of the effects of staying inside my envelope. Instead of beating yourself up when you slip or circumstances overwhelm you, it's better just to ask, "What can I learn from this experience?" For more on setting up a daily plan, see the Daily Schedule section in Chapter 7. We have posted the articles in the Success Stories section of our website.). Use a chair to kneel on to do dishes.Use mobility scooter to walk the dog and go to the woods (Gotta pace on that, too!. She uses pacing techniques, such as taking regular, scheduled rests and living within limits. I would say you are very much a candidate for a heart rate monitoring watch with an alarm set at 60% max heart rate running for as much as the day as possible. One planning technique is the Special Event Worksheet, which is described in Chapter 7. According to the Americans with Disabilities Act, employers are obligated to make "reasonable accommodations" for people with disabilities. Two items in Bobbie's list refer to medications, but most of her strategies involve changes in her daily habits and routines. If she is going on a one-week vacation, she plans for a two-week period. As pacing is a way to manage activity in order to limit the severity and number of crashes you have, you are aiming to do as much as you can, but only within the limits of your available energy. Such accommodations may include making changes in work schedule (such as using flextime), getting an ergonomically appropriate chair or changing job responsibilities. He alternated aerobic exercise and strength training. I have a window between 8 and 11 in the morning that is best for most activity, both mental and physical. 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. If you don't decrease your activity level to match your temporarily smaller envelope, the event will intensify your symptoms. If we pace on good days, as well as the bad days, we can help prevent this cycle of boom and bust” – Chronic Illness & the Art of Pacing He wrote that he enjoyed a good relationship with his physician, but experienced no benefit from visits with a chiropractor, a homeopathic doctor and an acupuncturist. You might start by planning a day at a time. Many people with CFS and FM find themselves caught in repeating cycles of push and crash, swinging between overactivity and forced rest. 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.