Both JoWynn and Dean used similar strategies in responding to Chronic Fatigue Syndrome. One person who tried this was a woman who became tired with almost any exertion. 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. Many patients find they have better and worse times of the day. Although he continued to be quite symptomatic, he was successful in working at that level while improving very gradually. At least in the way that the very limited energy of illnesses like ME/CFS, Fibromyalgia and Lyme disease demands. Your ability to do this depends on your developing a detailed understanding of your limits and then creating a schedule of activity and rest that honors those limits. For those in between, here are four options to consider. The rest I will discuss in this section is a preventive measure. If you are in that situation, what can you do to increase your consistency in living within your limits? Resting with eyes closed is completely different and, I found, very helpful. No one stays in her envelope all of the time. While most people understand that staying within their energy envelope would bring a higher quality of life, many find it difficult to do. Also, life has its ups and downs; some times are more stressful than others. Every evening I list my appointments and possible other activities for the following day. Kristin's story illustrates two common experiences of patients' struggle to balance illness and work. And I've noticed the graph of my days doesn't dip and rise so steeply. My sleep has been more refreshing and even my mood has improved. 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. The idea is to rest by plan, rather than in response to symptoms. Dr. Lapp talks about a person having a certain number of "energy dollars" to spend each day. It also helps you hold yourself accountable for your actions, by showing you the effects of your decisions. Sitting down while chopping things in the kitchen (on a good day), sitting down getting ready in the bathroom, moving around as little as possible. If you develop specific rules for yourself, you can simplify your illness management program into asking yourself two questions: What situation am I in right now? Many large stores have such devices, which they make available for free. If the items on your list take more time than your limits allow (for example, you would like to have six hours a day of activity, but your body allows four), you will have to make some adjustments in order to stay inside your energy envelope. It is the discipline to recognize and adhere to one's known limitations and to follow a strict regimen without periodically lapsing. Also, she reiterated her belief in the value of a self-management approach, saying "Over the years I've experimented with various treatments, remedies, regimens, supplements, and even, briefly and with bad results, some medications. Pre-emptive rest means resting daily according to a planned schedule. Another student was bothered by the effects of brain fog on her ability to read and retain information. His starting point was higher; he functioned at about 60 percent of normal in the early years of his illness. How can you respond to this dilemma in a way that allows you to enjoy the event without paying too heavy a price? For me, having CFS is like having diabetes: it's a chronic condition that can be managed and that requires lifestyle adaptations. Deciding when to apply for disability is complicated. I tell myself to inhale deeply and calm diwn and be in the state of rest and digest before browsing the internet and exercise and all these exhausting activities etc and also not to worry about people doubting me faking cfs or not becoming a let down, yes that person who ruins the party. It is the will to protect oneself, to not over-do and to find ways to be productive and find fulfillment under unfamiliar and difficult circumstances. The discipline required is exactly the opposite of the discipline so valued in the scholar, professional or athlete. 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.". Pre-Emptive Rest Yeah, yeah, I know I should be pacing! Dean Anderson's experience was different from JoWynn's in some respects, but similar in others. Should I be resting?Sometimes I am absolutely ok to start an activity and other times I am only doing it because I am motivated and want to be active. For more, see the Weekly Schedule section of Chapter 7. Two items in Bobbie's list refer to medications, but most of her strategies involve changes in her daily habits and routines. They may require less energy than housework, errands, or paid work, but they are activities nonetheless. While pacing may seem daunting at first, it can become second nature over time as one's daily habits are altered. I stop and go rest for at least 15 mins. Also, I have had good success in reducing the effects of driving if I stop every two hours, tilt the seat back and snooze for 10 to 15 minutes. Take a task like chopping vegetables. Since I've been forcing myself to rest every day, I have found I have more stamina. He made a rule to take extra daily rest for at least a week after symptoms from the secondary illness had ended. You may feel fine right after going outside your envelope, experiencing increased symptoms only later. am I an asshole?” etc cuz just mere thoughts can exert you too. First, she began to listen to her body, asking what it needed. Resting the Mind Like reducing hours, changing positions can free energy for other purposes, although such a change requires some emotional, as well as financial, adjustments. People in our program have made changes to positions with less responsibility, to jobs that were less taxing emotionally and to work that was less physically demanding. For a week or so before, I double my normal daily rest time. (Her limits were quite restrictive, corresponding to a score around 20 on our Rating Scale. I have a window between 8 and 11 in the morning that is best for most activity, both mental and physical. Staying within them offered her a way to feel "as good as possible." To explain the former, he wrote that his approach to CFS had changed over time. She rates herself at 60 most of the time and sometimes higher. I strongly recommend keeping written records. First, finding a long-term solution often takes some time. If not, identify items that can be postponed, delegated or eliminated. She found that she had good mental stamina for several hours if she started the afternoon with a brief rest. She also makes sure that she paces herself carefully during the trip, resting during her non-active times. Over time, she significantly increased the percentage of good days in each month from about 35% in 1996 to 80% and more in 1999. For example, you may be able to understand what you read better if you turn off the TV while reading or move to a quieter place. At such times, it may be helpful to remind yourself that, by resting now, you are avoiding symptoms, and more rest, in the future. Here are several techniques our students have found useful. 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. On the other end, some people are so severely ill that they cannot work. She makes sure that she doesn't take on any extra activities for a few days before and a few days after her trip. Letting go of the idea of recovery, she decided to focus on feeling better. § I can’t pace at work § Nobody said it was easy!! Glad you have gotten out of it, how long does it take for you? Delegating means finding someone else to do a task that you used to do. ME/CFS Diary App • Helps calculate baselines • Produces graphs and reports . By resting in small blocks, she added three hours of activity time to her day without increasing her symptoms. Over time, you can extend pacing to your whole life, living your life according to a schedule in which activity and rest are consistent and planned.

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