Helping yourself feel better

Discussion in 'Fibromyalgia Main Forum' started by teach6, Dec 23, 2002.

  1. teach6

    teach6 New Member

    I learned about Bruce Campbell through a message from my local support group announcing his course last January. After researching to be sure it was something legitimate I decided to sign up. Next year I will become a volunteer facilitator for a group.

    I learned so much from that course, and the others I have taken since then that I wanted to share these articles with those who are not familiar with his work. They were taken from The CFIDS Chronicle.

    There is a lot of information here, so you may want to print it out and read it a little at a time. If you want more info about his courses, which are for those with both CFS and FM you can do a google search for Bruce Campbell selfhelp and it's the fourth listing from the top.

    Barbara

    Self Help and CFIDS
    Part 1 of 2
    By Bruce Campbell, PhD
    Note: Shortly after I became ill with CFIDS, I read an article in The CFIDS Chronicle entitled, "Recovery from CFIDS." In it, Dean Anderson described his successful eight-year struggle with the illness. Turning away from medical treatments, he instead figured out what he could do to make himself better. Nearly five years have passed and I have improved greatly using a similar approach. I want to describe my own recovery in the hope that others may find encouragement in the power of self help. -BC
    When I was diagnosed with CFIDS in November 1997, I had been sick for four months with a flu-like illness. During that period I gradually reduced my time at work to 15 hours per week, then stopped working entirely. Neither strategy reduced my symptoms. I functioned at about 25 percent of my pre-illness level.
    Today I have returned to a nearly normal life. My improvement has been gradual but steady, about one or two percent a month. I now rate myself at about 90 percent. While I still have limits and experience mild symptoms at times, I have an activity level that is similar to others of my age. I don't know whether my improvement will last, but I am encouraged by the fact that my progress has been steady with no major setbacks.
    Building a self-management strategy
    Even before CFIDS, I had learned to ask myself two questions when facing a health problem: What help does the medical system offer? And how can I help myself? After getting my diagnosis, I read everything I could find about CFIDS. I learned that the medical resources were quite limited; there was no medical cure for CFIDS and no standard treatment. It seemed that the best a medical approach had to offer was modest symptom improvement, probably requiring a long period of experimentation.
    On the other hand, it appeared that some people had success with a self-management approach. I was attracted to this option in part because of my professional experience before becoming ill. I had been a consultant to self-help programs at the Stanford University Medical School and seen some impressive results from people's participation in self-help groups for other chronic illnesses. That experience convinced me that how one lives with chronic illness can change its effects and may even change the course of illness.
    Based on my research and my prior experience, I decided to forego experimenting with medical treatments and instead utilize exclusively a self-help approach. I felt confident that I could find many things that would help me improve.
    This decision was not a rejection of medicine in general or of my doctor. I checked in with him monthly by phone to keep him apprised of my progress, and continued to see him for other medical problems.
    Listing assets
    I believe that all patients have resources that can help them cope with their illness. The resources vary from person to person. These were some of mine:
    I was fortunate to have a moderate case of CFIDS. Though significantly limited by the illness, I was better off than the average patient in the severity of my symptoms.
    My life circumstances were favorable. I was in my early 50s, old enough to have created a financial cushion for myself. I was not stressed by the financial pressures that many CFIDS patients face. I received understanding and support from my family and closest friends. They accepted my illness as real and agreed with my decision to pursue a self-management approach. I also lived alone. Although it could be frightening on the days when I was too sick to get to the grocery store, living alone gave me the freedom to live my life as I thought necessary for my recovery;
    My personality and disposition lent themselves to a self-help approach. I enjoy solitude, and have often used discipline and patience to achieve my goals;
    I had cancer in the 1970s that was treated successfully, so my life already included an experience of recovery from serious illness.
    Accepting the illness
    For more than a year after becoming sick, I wondered whether I should make recovery my goal. That's a hard standard to live with. I found having the goal of recovery condemned me to an emotional roller coaster, in which I was encouraged by my progress but devastated by the inevitable setbacks.
    The dilemma helped me to understand the distinction between those things I could control and those I couldn't. I finally concluded that whether I recovered was out of my hands, but that there were many things I could do to improve my quality of life. By suspending expectations about recovery, I could focus on what I could do to make my life better.
    I found inspiration in Dean Anderson's description of how he combined acceptance of being ill with hope for a better life. He described acceptance not as resignation, but rather "an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life." I adopted his formula as my own approach to CFIDS.
    Coping strategies
    Chronic illness touches many aspects of our lives: our ability to work, our moods, our relationships, our finances, our hopes and dreams, our sense of who we are. In response, I used a variety of self-management strategies. I will explain a couple of them in this article and then conclude with more in the next issue of the Chronicle.
    Keeping records.
    I was confident that making notes about my life would enable me to see patterns, to identify links between my actions and my symptoms. I experimented with a variety of journals or logs, most requiring only a few minutes a day to fill out. I was greatly rewarded by the effort.
    Record keeping enabled me to recognize fluctuations in symptoms by showing me that my CFIDS was worse in the morning and better in the evening, and that the effects of exertion were cumulative during a week. Also, logging showed me the connection between standing and symptoms, documented how much exercise was safe, and showed me my vulnerability to stress.
    Logging was also a good motivating tool. After noticing that some days were better than others, I focused on trying to find what I was doing that created good days so I could expand them. I also used my records to chart my progress over time. At the end of each month, I rated myself using a 0-to-100 rating scale. Seeing written evidence of improvement gave me hope, motivating me to continue my self-management program.
    Perhaps the most dramatic benefit of logging was the two hours I spent at the end of 1998 trying to understand the relapses I had experienced that year. Reviewing my daily logs, I found eight instances in which my symptoms had been so intense that I had spent at least one day in bed. Looking for common causes, I found that almost all of the relapses were associated either with travel or with having a secondary illness. I then developed strategies to minimize the effects of travel and other illnesses, including taking more rest at those times than usual. I believe the strategies were successful, as I have had no relapses since.
    Minding the energy envelope.
    To give my body a chance to recover, I had to accept living within the limits imposed by the illness. I was helped by the concept of the energy envelope. This is the idea that people with CFIDS have less energy than those who are healthy and that they can improve their quality of life by staying within the limits of their available energy.
    For some time, I used this idea in a very general way. I would ask myself whether doing something would take me "outside the envelope" or whether I was living "inside the envelope." By reminding me of my limits, the concept of the envelope helped me gain some control over symptoms.
    Then I decided to look at my limits in different areas of my life. I wondered how much sleep I needed at night, how much daytime rest, how much time I could safely spend on the computer, how long could I stand at one time before triggering symptoms, how far could I walk. Thinking of my energy envelope in terms of different aspects of my life led to a detailed understanding of my limits. I ended up with a list of about fifteen items. In addition to those just mentioned, I included activity limits (how long I could do various activities like driving, standing, housework, reading and spending time with people), stressors in my life, food sensitivities, sensitivity to light and noise and emotions. It took me at least a year to develop this more detailed understanding, but I felt rewarded all along the way because every insight I had helped me gain more control.
    Self Help and CFIDS
    Part 1 of 2
    By Bruce Campbell, PhD
    Note: Shortly after I became ill with CFIDS, I read an article in The CFIDS Chronicle entitled, "Recovery from CFIDS." In it, Dean Anderson described his successful eight-year struggle with the illness. Turning away from medical treatments, he instead figured out what he could do to make himself better. Nearly five years have passed and I have improved greatly using a similar approach. I want to describe my own recovery in the hope that others may find encouragement in the power of self help. -BC
    When I was diagnosed with CFIDS in November 1997, I had been sick for four months with a flu-like illness. During that period I gradually reduced my time at work to 15 hours per week, then stopped working entirely. Neither strategy reduced my symptoms. I functioned at about 25 percent of my pre-illness level.
    Today I have returned to a nearly normal life. My improvement has been gradual but steady, about one or two percent a month. I now rate myself at about 90 percent. While I still have limits and experience mild symptoms at times, I have an activity level that is similar to others of my age. I don't know whether my improvement will last, but I am encouraged by the fact that my progress has been steady with no major setbacks.
    Building a self-management strategy
    Even before CFIDS, I had learned to ask myself two questions when facing a health problem: What help does the medical system offer? And how can I help myself? After getting my diagnosis, I read everything I could find about CFIDS. I learned that the medical resources were quite limited; there was no medical cure for CFIDS and no standard treatment. It seemed that the best a medical approach had to offer was modest symptom improvement, probably requiring a long period of experimentation.
    On the other hand, it appeared that some people had success with a self-management approach. I was attracted to this option in part because of my professional experience before becoming ill. I had been a consultant to self-help programs at the Stanford University Medical School and seen some impressive results from people's participation in self-help groups for other chronic illnesses. That experience convinced me that how one lives with chronic illness can change its effects and may even change the course of illness.
    Based on my research and my prior experience, I decided to forego experimenting with medical treatments and instead utilize exclusively a self-help approach. I felt confident that I could find many things that would help me improve.
    This decision was not a rejection of medicine in general or of my doctor. I checked in with him monthly by phone to keep him apprised of my progress, and continued to see him for other medical problems.
    Listing assets
    I believe that all patients have resources that can help them cope with their illness. The resources vary from person to person. These were some of mine:
    I was fortunate to have a moderate case of CFIDS. Though significantly limited by the illness, I was better off than the average patient in the severity of my symptoms.
    My life circumstances were favorable. I was in my early 50s, old enough to have created a financial cushion for myself. I was not stressed by the financial pressures that many CFIDS patients face. I received understanding and support from my family and closest friends. They accepted my illness as real and agreed with my decision to pursue a self-management approach. I also lived alone. Although it could be frightening on the days when I was too sick to get to the grocery store, living alone gave me the freedom to live my life as I thought necessary for my recovery;
    My personality and disposition lent themselves to a self-help approach. I enjoy solitude, and have often used discipline and patience to achieve my goals;
    I had cancer in the 1970s that was treated successfully, so my life already included an experience of recovery from serious illness.
    Accepting the illness
    For more than a year after becoming sick, I wondered whether I should make recovery my goal. That's a hard standard to live with. I found having the goal of recovery condemned me to an emotional roller coaster, in which I was encouraged by my progress but devastated by the inevitable setbacks.
    The dilemma helped me to understand the distinction between those things I could control and those I couldn't. I finally concluded that whether I recovered was out of my hands, but that there were many things I could do to improve my quality of life. By suspending expectations about recovery, I could focus on what I could do to make my life better.
    I found inspiration in Dean Anderson's description of how he combined acceptance of being ill with hope for a better life. He described acceptance not as resignation, but rather "an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life." I adopted his formula as my own approach to CFIDS.
    Coping strategies
    Chronic illness touches many aspects of our lives: our ability to work, our moods, our relationships, our finances, our hopes and dreams, our sense of who we are. In response, I used a variety of self-management strategies. I will explain a couple of them in this article and then conclude with more in the next issue of the Chronicle.
    Keeping records.
    I was confident that making notes about my life would enable me to see patterns, to identify links between my actions and my symptoms. I experimented with a variety of journals or logs, most requiring only a few minutes a day to fill out. I was greatly rewarded by the effort.
    Record keeping enabled me to recognize fluctuations in symptoms by showing me that my CFIDS was worse in the morning and better in the evening, and that the effects of exertion were cumulative during a week. Also, logging showed me the connection between standing and symptoms, documented how much exercise was safe, and showed me my vulnerability to stress.
    Logging was also a good motivating tool. After noticing that some days were better than others, I focused on trying to find what I was doing that created good days so I could expand them. I also used my records to chart my progress over time. At the end of each month, I rated myself using a 0-to-100 rating scale. Seeing written evidence of improvement gave me hope, motivating me to continue my self-management program.
    Perhaps the most dramatic benefit of logging was the two hours I spent at the end of 1998 trying to understand the relapses I had experienced that year. Reviewing my daily logs, I found eight instances in which my symptoms had been so intense that I had spent at least one day in bed. Looking for common causes, I found that almost all of the relapses were associated either with travel or with having a secondary illness. I then developed strategies to minimize the effects of travel and other illnesses, including taking more rest at those times than usual. I believe the strategies were successful, as I have had no relapses since.
    Minding the energy envelope.
    To give my body a chance to recover, I had to accept living within the limits imposed by the illness. I was helped by the concept of the energy envelope. This is the idea that people with CFIDS have less energy than those who are healthy and that they can improve their quality of life by staying within the limits of their available energy.
    For some time, I used this idea in a very general way. I would ask myself whether doing something would take me "outside the envelope" or whether I was living "inside the envelope." By reminding me of my limits, the concept of the envelope helped me gain some control over symptoms.
    Then I decided to look at my limits in different areas of my life. I wondered how much sleep I needed at night, how much daytime rest, how much time I could safely spend on the computer, how long could I stand at one time before triggering symptoms, how far could I walk. Thinking of my energy envelope in terms of different aspects of my life led to a detailed understanding of my limits. I ended up with a list of about fifteen items. In addition to those just mentioned, I included activity limits (how long I could do various activities like driving, standing, housework, reading and spending time with people), stressors in my life, food sensitivities, sensitivity to light and noise and emotions. It took me at least a year to develop this more detailed understanding, but I felt rewarded all along the way because every insight I had helped me gain more control.

    Self Help and CFIDS
    Part 2 of 2
    By Bruce Campbell, PhD
    In the spring issue of the Chronicle, Bruce Campbell, a person with CFIDS, described part of his self-help recovery program. He became ill with CFIDS in 1997, but today estimates that he has regained nearly 90 percent of his former energy levels.
    I found that CFIDS touched all aspects of my life, affecting how much I could do, my ability to work, my moods, my relationships, my finances, my hopes and dreams. In response, I used a variety of self-management strategies. I described several in Part 1 of this article and will outline several more here.
    In my first several months with CFIDS, I was on a roller coaster. I rested when my symptoms were intense, then was overactive when the symptoms declined. Doing too much led to high symptoms again and the demoralizing cycle started over.
    I was living in response to my symptoms, which left me feeling my life was out of control. The idea of pacing offered an alternative. Pacing meant finding the right balance of activity and rest, and applying that balance on an everyday basis.
    The key was to live a life that was planned, with a similar amount of activity and rest every day. Having a consistent level of activity made sense, but I resisted the idea of scheduling rest every day. It was hard to accept the idea that I needed to lie down voluntarily regardless of how I felt.
    I decided to try it by having a 15-minute rest every afternoon. Much to my surprise, the rest helped, reducing my symptoms and making my life more stable. After a while I added a morning rest as well. I also experimented with how I structured my rests, finally defining rest as “lying down in a quiet place with my eyes closed.”
    I found that taking these “pre-emptive rests,” as a friend called them, enabled me to reduce the time I spent in “recuperative rest” or resting in response to symptoms. The result was that my total rest time was reduced. Looking back, I think the two daily rests were the most important thing I did to aid my recovery. Resting on a planned schedule greatly stabilized my life.
    Getting support — and helping others
    Within weeks of receiving my diagnosis, I joined two local support groups. The experience was especially useful because of the friends I made. I found there is something powerfully healing about feeling understood, all the more so for a stigmatized disease that some don’t believe is real. Illness is isolating; feeling connected to others gave me a sense of belonging. Also, fellow patients were tremendous sources of information and perspective.
    Because I stopped working and dropped out of my volunteer commitments shortly after becoming ill, fellow patients became perhaps my most important community. I think that served me well. I took CFIDS patients to be my peers, not healthy people. That meant that I measured myself in comparison to them, not to my peers from work. That comparison took a lot of pressure off.
    A few months after receiving my diagnosis, I started a self-help class for myself and other patients I had met. Over time it has become the CFIDS/Fibromyalgia Self-Help program (see note at end of story). Even though I didn’t realize it at the time, leading the class helped me deal with one of the greatest challenges of chronic illness: finding new meaning in response to massive loss. By developing new goals and focusing on what I was still able to do, I found a way to feel useful even when previous roles had fallen away.
    Controlling stress
    I was surprised at how easily I was upset by stress. Even modest amounts of stress greatly intensified my symptoms, creating a feedback loop in which my symptoms and my response to them intensified one another. Once I realized how vulnerable to stress I had become, I decided that dealing with stress sensitivity had to be a big part of my effort to manage CFIDS.
    My first reaction was to try various strategies for stress reduction. The most helpful proved to be a regular relaxation/meditation practice, which I included in my daily rests.
    Stress avoidance proved to be even more helpful. I learned that I could prevent stress by avoiding those things that caused it. The most useful strategy in that regard was routine, living my life as much as I could according to a plan. Having a daily schedule of activity, rest, exercise and socializing at set times gave structure and predictability to my life.
    I also learned to identify and avoid stress triggers, those situations and even specific people that set off symptoms. I learned, for example, that I was vulnerable to sensory overload after observing how noisy situations quickly led to intense symptoms.
    Managing emotions
    I knew from my work at Stanford that strong emotions are normal reactions to having a chronic illness. Serious illness turns people’s lives upside down, upsetting their hopes and goals, and creating frustration and uncertainty. So I knew intellectually that managing emotions could be just as challenging as managing the physical aspects of the illness.
    I don’t think this background prepared me, however, for the strength of the feelings associated with CFIDS and their apparent connection with the physiology of the illness. I felt less in control of my emotions than at almost any time in my life.
    I developed a number of strategies in response, all based on recognition that I was much more emotionally vulnerable than usual. First, I observed that the strength of my emotions was often associated with the strength of my physical symptoms, and that the strategies used to control symptoms also helped moderate my emotions.
    Second, I observed that I had an exaggerated initial reaction to relapses, often seeing them as evidence I would never improve. So I learned to talk in reassuring tones to myself. I consoled myself by saying things like “you’ve always bounced back from other setbacks” or “remember how life looks better after you’ve rested.”
    Third, I trained myself to mute my emotions after observing the toll that strong emotions took on me, whether positive or negative. It seemed that experiences that triggered the release of adrenalin led to an increase in symptoms. As a way to avoid symptoms, I tried to cultivate a Zen-like calmness and to construct a life that emphasized routine.
    Tapping the power of self-help
    My self-help approach began with an acceptance that my life had changed, perhaps forever and certainly for an extended period. I also acknowledged that my illness imposed limits on me, and decided that living a disciplined life consistent with those limits offered the best chance of controlling symptoms and improving my quality of life. Finally, I had confidence that I could find things that would help me get better and committed myself to experimenting to find what worked.
    My approach of using self-help exclusively was different from that taken by most patients. Under different circumstances, I might have combined a self-management approach with a medical one. But self-help served me well, enabling me to regain most of my lost health gradually over a period of four years, using techniques I believed were safe and prudent, focusing as they did on living within limits and extending those limits very gradually as allowed by the illness. I hope my experience will suggest to other patients that attitude and behavior can have powerful effects on health.

    Bruce Campbell, PhD, created and directs the CFIDS/Fibromyalgia Self-Help program, which offers low-cost self-help courses over the Internet and other resources for people with CFIDS and FM. . Prior to becoming ill, Campbell worked on self-help programs at the Stanford University Medical School.


    [This Message was Edited on 12/23/2002]
  2. Phoenixbard

    Phoenixbard New Member

    Barbara, thank you for posting this. It was really uplifting and inspirational. One of the first things that my Dr. told me when I was dx'd was not to look for Dr's to solve this for me.

    Slowly I am learning how to re-create my life. Before this DD I had my whole future planned out (well, except illness)but hey if this disease has done nothing else, it has made me truely look within myself, and that (as scary as it is) has helped me greatly. Thanks, again and Merry Christmas.
    Phx
  3. teach6

    teach6 New Member

    So others may read this.

    Barbara
  4. CelticLadee

    CelticLadee New Member

    I scan read it and saw the value in it for me is great. I will print it and study it. He verbalizes somethings I have done instinctively and other strong points I need to consider applying. I am a newbie with CFIDS and I am trying to keep a positive, informed & active approach towards my healing. I appreciate you taking time to share this informative article. Thank you again.
    CelticLadee
  5. Mikie

    Mikie Moderator

    Everything we can do to help ourselves works together for healing. We simply cannot depend on our docs alone to help us.

    For me, it is a mixture of traditional medicine, therapy, diet, exercise, and trying to learn to pace myself.

    Love, Mikie
  6. selma

    selma New Member

    Thank-You. Love, Selma
  7. LisaMay

    LisaMay New Member

    What a great post! Even though I read the entire thing, I still printed it out so I could share it with my husband. I believe that we have to participate in our healing process. Whatever that may mean to you is a personal choice. My choice is to manage my life in a semi-normal fashion. I realize that it all can't be done "today" (even though I still try and pay later) and I must pace myself.

    Hooray for all of us! Lisa