When I developed Chronic Fatigue Syndrome in May of 2012, I certainly fit the classic description. I had been chronically stressed for years: actually decades (I was 62 at the time, widowed, retired and living alone). I’d been a high school teacher, raised a large family, nursed my husband during his final illness, and then in “retirement” immersed myself as an over-achieving helper in increasingly stressful volunteer work that involved toxic relationships. But I felt that if I quit that work, I would lose my life purpose. Just at a crisis point, when I felt I couldn’t continue, I came down with a virus that was going around. For my friends and neighbors, it was ten days of headaches, low-grade fever and body aches, but for me it didn’t end.
I tried pushing through for several months on the assumption that whatever the virus was, it would pass any day now. Meanwhile, I had a battery of blood tests done, which, as usual with CFS, turned up nothing. I was due to fly to Chicago (I live in Jamaica) that summer, and went ahead with those plans. While in Chicago, trying to keep up a normal schedule of visiting friends and relatives, I developed more symptoms. Everything was hurting; I had bladder and abdominal symptoms as well as severe headaches, severe fatigue, body aches, etc., etc. I did another battery of tests: again, nothing.
Then I continued my summer plans, flying to Nova Scotia to join my elderly mother. The strain of taking care of her as well as myself made me crash even further. A friend who was a nurse jumped in to help. She saw me struggling to help with normal activities like cooking and said, “Kathy, you’re sick. You need to rest. Do you even know what resting is? Go to bed; read a book; take care of yourself!”
By now I’d been sick for several months, and my friend’s words resonated. Soon after, I flew home. I’ve always been an independent, self-starting person, so it was hard, but I asked neighbors for help and cut back drastically on my activities. I was mystified and demoralized, but I began to face the reality that I would have to back off dramatically from my previous commitments and activities, at least for a while.
Taking this new approach of actually taking care of myself, I began to relax. I remember thinking, well, if this is all the energy I have, what can I do to make the best of it? I started studying Spanish and Photoshop online and in books and allowed myself to stop feeling guilty about letting go of my responsibilities. I even started writing a novel, an activity I hugely enjoyed. And lo and behold, I gradually started getting better.
Just about the time that I started feeling like myself again – about ten months after my initial crash – I noticed in my online medical chart that my doctor had written “Chronic Fatigue Syndrome” as his diagnosis after my last visit. I thought, “Well, I guess I fooled him!”
For the next year and a half, I had near-normal energy about three-quarters of the time. So . . . I went back to my former roles and responsibilities. It never occurred to me that the one-quarter of the time that I had the old, familiar symptoms coincided with the times when I took on the most responsibilities and fell back into old, stressful behavior patterns.
In late November, my daughter had a baby and needed help with what fortunately turned out to be minor complications. I flew to New York to help her and within a week, I was very sick. Ignoring my symptoms (again!!), I continued on to Chicago and helped my sister host a big family Christmas. By the time I got home, I was in full-blown crash, worse than ever before.
Now I panicked. I developed intense insomnia – didn’t sleep for days – and was prescribed a benzodiazepine drug. I started researching CFS with a sense of fear and desperation. I went the rounds of learning about exercise intolerance, POTS (which I self-diagnosed myself having), and began a slow, graduated exercise program. I found some researchers who were doing antiviral treatments and started an antiviral course. I learned about the mitochondria theory and began taking bunches of supplements. You name it, I did it.
I was doing cognitive behavioral therapy with a wonderful woman, who pointed out to me that obsessively doing research online was not the same thing as resting, but I found it hard to stop. Finally, I found an optimistic story about recovery from CFS online, and since I was determined to get better, I began following that website, joining their online support group. I learned about pacing and created elaborate plans and worksheets to record and plan my activity levels, continuing to do a bare minimum of exercise: walking for five to eight minutes at a time, once or twice a day, and continuing the weight-bearing leg-lifts I’ve done for years to prevent arthritis pain in my knees (these latter were done lying down and I seemed to tolerate them a couple of times a week). I continued writing my novel and working on photographs, both in a semi-prone position.
What was my level of functioning during this time? I rather optimistically told myself I was at around 40-50% of normal. But realistically, I was rarely on my feet for ten minutes. I spent my days lying on my couch. I sat on a stool to fix my meals. From a very active, intense person, I’d basically become bedridden and housebound.
The following summer, I flew to Chicago to stay for several months and try to get medical help. I was concerned about my ongoing sleep problems and dependency on habit-forming drugs, so I saw sleep professionals and tried some of everything else with little success. I went to an integrative medicine doctor for guidance about CFS. She gave me some reading, prescribed some supplements, and suggested I go to a meditation teacher and begin a regular practice and recommended I try acupuncture.
The acupuncture was very relaxing; it required me to lie still, eyes closed for up to an hour in a nice, quiet place. And the acupuncturist was also encouraging about the possibility of recovery. But it did not noticeably help me. However, starting a regular meditation practice (in my case, I started with TM as that’s what the doctor had suggested) had the effect of calming me down. I’ve maintained that practice ever since, though now I do it sitting, whereas as back then I adapted it by reclining while meditating.
And then, in September, someone in the CFS online support group posted a link to an online lecture series, and I discovered Ashok Gupta’s Amygdala Retraining program.
It resonated right away. I had used John Sarno’s mind retraining techniques decades earlier to cure severe back problems, so the amygdala hypothesis made sense to me. I started the program right away.
I took Ashok’s advice and quit all my other research. I also quit participating in the online support group. This was a relief. The group had begun to feel like a “pity party,” or at best like “how to live with CFS,” rather than something that anticipated recovery. Many people simply used it to report balefully on their symptoms and how bad they felt. This was discouraging. I wanted to recover and was willing to do whatever it took. I focused completely and solely on ART.
My routine changed over time. As I read other people’s experiences, one thing I’ve noticed is that many people doing the program worry that they are not doing enough, not doing it right, not spending enough time on it, etc. I think one thing that may have been helpful to my recovery was taking very literally Ashok’s guidance of “do your best and leave the rest.” I used the techniques that spoke to me, which I suspect are different for each person – this is why it is so useful that Ashok provides a menu of techniques. I found the following routine helpful for me:
I did twenty minutes of meditation in the morning before breakfast, another twenty before dinner, and usually another (often Soften and Flow or Surrender) sometime in the middle of the day when I needed a good rest. After my morning meditation, I did four rounds of ART using the mind map. After the first month or so, I didn’t use the physical map, but walked through the steps as if I was using it. I did four because I couldn’t come up with a fifth thought to retrain. I think I spent maybe a minute or minute and a half on each round, so this did not take long. However, I found it quite powerful, especially as I learned to speak to my “inner child” and felt the visualizations more fully. During the day, I did brief, often silent “stops” when I noticed negative thoughts (I’m sure I often did not notice them!). I also did the worksheets for the New Groove technique, and went back to those frequently to remind myself about my particular issues and change my thinking, using them in my silent “stops.” I used the Accelerator frequently in the early evening on my sleep difficulties.
Most days, I did a gentle, 15-20 minute yoga routine developed for people with CFS and related issues that I found online. I did not do this before breakfast; midday suited me better.
In addition to the retraining, I also was diligent about continuing to pace myself. I would notice how long I could do a specific activity before I became exhausted. While I could read and use the computer for longer periods of time, I found that engaging in conversation really tired me out. I went from ten to twenty and finally thirty minutes of tolerance of conversation – more if it was an uplifting conversation, less if it was stressful in any way.
I also learned to stand up for what I needed with friends and family. If a conversation was stressful, I would politely say I had to get off the phone. If the conversation was in person, I would say I’m sorry, but I’m really tired and I need to rest for a while, could we continue this later?
Going out of my house was another time-limited activity. Early on in my pacing awareness, I could go out (in a car and to somewhere I could sit) for about an hour. That gradually increased (with ups and downs) to about two or a little more. Most of my day, I was lying propped up on my couch.
And let me repeat: I DID MY BEST AND LEFT THE REST. I did not beat myself up if I forgot to do something or didn’t feel up to it that day (though I did meditate and do ART daily). I adapted the program to suit me without feeling that I was “cheating.” I looked forward to the webinars and a few times had transformational insights from doing the guided meditations in them. I then used these insights to re-craft my retraining dialog with myself.
As I did the retraining, all of my physical and social limits gradually increased. In November, I plateaued at about 80 – 90% of energy and health. The plateau was discouraging: I, of course, wanted to see constant progress and complete recovery. But I knew that no process in nature moves in a straight line. I took seriously my six-month commitment to the program and kept at the retraining even though nothing seemed to be happening. (After all, when you put a pot of water on the stove burner, nothing seems to be happening for quite a long time!) November passed. December passed. No change. Then in January, progress began again. A few weeks into February I gradually realized that I’d gone several weeks with no symptoms! I’d reached 100%!
I still tired easily, and it took me some time to understand and accept how deconditioned my body had become from years of inactivity. I learned to be patient with reconditioning myself. I had gotten off the habit-forming sleeping pills by gradual weaning under the instructions of a sleep psychologist, and was using herbs, melatonin and an occasional prescribed (non-habit-forming) sleep aid, but was sleeping well with that help. So I could gradually increase my physical activity and begin to get back into shape, continuing and enhancing my weight routine, walking, riding a stationary bike and swimming. And – wonder of wonders – I could go out, go shopping, talk to people for long periods of time and still no symptoms!
My challenge over the next several months was twofold: first, to learn how to reorganize my life and create new goals for myself while making sure to do my one-year of taking it easy and enjoying life as suggested by Ashok. And second, using the techniques as needed to deal with fears that cropped up about whether my recovery would be permanent. Anytime I felt tired, I had a tendency to worry, and I knew I still had some learning to do in order to avoid falling back into the patterns that made me vulnerable to CFS in the first place. In March or April, I began working with a coach on these things, using amygdala retraining tools and EFT, and this was extremely helpful. For example, I discovered that I got more tired from emotional triggers than from physical ones – something I’d been misinterpreting as I increased my exercise.
I also repeated the webinar series for the additional information and ongoing support it provided. Over the next year or two, I occasionally watched one or another of the webinars saved on my laptop to give myself a reminder or reinforcement. I also watched the Meaning of Life videos, and continued to use the New Groove worksheets on specific things that I found stressful (in my case worries about sleep and tension related to travel and family issues).
As I write this, I am 68 years old and have more energy than I did ten years ago. The novel I wrote while I was sick is going to be published this year (it has nothing to do with CFS), which is very exciting, requires ongoing work with the publisher and will require travel for promotion. I travel three or four times a year, thoroughly enjoy my grandchildren, exercise daily and have created a new life that, while different from the one I had before my illness, is deeply meaningful and gratifying to me. It has been an amazing process, and I have to say that I am grateful for having gone through it, as difficult as it was.
Some words of advice to new retrainers:
* Don’t be perfectionist about the program. DO YOUR BEST AND LEAVE THE REST. You will gradually learn what works for you; you don’t need to do every technique exactly as presented. Adapt the program to your needs.
* ACCEPT where you are right now; you are okay. You are in a process that will take an unpredictable course and an unpredictable amount of time, but it will get you back to full health. Try not to feel sorry for yourself; you will get better and you will learn so much about yourself in the process that you will be better than you were before you got sick.
* HAVE CONFIDENCE in the process. It has worked for many people, including me. Have patience. It will work for you.
* Be KIND to yourself. Take care of yourself with as much LOVE as you would give your partner or your child. You are worthy of it.
* Be willing to CHANGE your life as you need to. You don’t have to go back to the way things were before you got sick; you can craft a new course for your life – Kathy