A Chronic Fatigue Syndrome (ME/CFS) / Fibromyalgia Lifestyle: What Works for Me

                                                                               

As a person whose health has been compromised by chronic illness for many years, I have made lifestyle choices that optimize my situation. I arrived at these things through experimentation and intuition. I believe that these recommendations are beneficial for most people and just make good sense. Persons with Chronic Fatigue Syndrome and related conditions have been described as “canaries in a coal mine,” meaning our keen sensitivities to stress and toxins are harbingers of things that might eventually or to a lesser degree affect the general population.

 Paying attention to how our environment and diet affect our health is crucial to maintaining the best quality of life and the information we gain may be helpful for others.

Starting the Day
I begin each day with a disciplined morning routine. It sets the tone for my day even after a bad night. After flossing and brushing my teeth and rinsing my face with warm water, I do about 15 minutes of gentle exercise. I adopted a sequence of moves that I learned from yoga and Tai Chi class and Feldenkrais lessons. I follow this with 5 minutes of yoga breathing exercises and 15 minutes of meditation.

The specific yoga breathing exercises or pranayama I do are kabalabhati, which is great for stimulating gut motility, and alternate nostril breathing. I initially learned to mediate back in the 1970s doing Transcendental Meditation. My meditation practice was later influenced by Body Scan Relaxation Technique, Centering Prayer and biofeedback skills, so now it is a mix between all of them.

Before I take a shower, I do a dry brush massage. Natural health practitioners claim this is beneficial for detoxification. I’m not sure this is true but it feels good. I also do a Neti pot with salt water in the shower, which is supposed to help prevent colds and flus. Again, I’m not sure this is the case but I like the routine. I avoid soaps, shampoo and lotions with chemicals or fragrances. I end my warm shower with a short cold shower, which can help relieve muscle soreness.

During the Day
I try to spend some time everyday outside in natural light. When I am exhausted, just sitting outside is therapeutic. If I have the energy, I like to go for a walk. Lying on the ground can help my body get back in balance when I am extremely stressed physically. In several minutes, my breathing shifts by itself to deep exhales. This only occurs when I am extremely unbalanced and the ability to do it is of course weather dependent!

Rest
My personal lifesaver all these years in terms of rest is taking a nap every afternoon after lunch. I actually can’t take a nap any other time of day, and I think this early afternoon time corresponds to a natural biorhythm observed by many cultures as the siesta. I have arranged my schedule for over 30 years to accommodate my nap because it makes such a difference. I unplug the phone, pull the blinds, climb into bed and sleep deeply for 30 to 45 minutes most days. If I’m traveling, I find a park where I can take a nap in my car. My family and friends are so used to my routine that they take it for granted that its “Mom’s time out.” In some of my worst periods, the rest I got during my afternoon was critical. Now that I am much healthier, my nap still feels great and helps me recharge for the rest of my day.

Managing stress is critical for anyone with health problems. Since I have a limited amount of energy, I only make commitments to activities that I can manage without a lot of added stress and that I feel are valuable. One of the benefits of being chronically ill is that it has forced me to make good decisions about relationships and work. I don’t have a margin of error to play with, and I think in the long run this has served me well.

Diet
The most important requisite I have found for managing my health is diet. In the early years of my illness, I was plagued with severe headaches. It was pretty obvious what foods and drugs aggravated my headaches, and I eliminated them. They were: alcohol, caffeine, sugar, and most drugs including pain relievers, sleep aids, etc. Over the years I also had to eliminate most herbs and natural remedies, which are basically mild forms of drugs, all sweets including most fruit and foods high in histamine, which includes foods that are fermented or aged.

Another way to look at my particular situation is that it is difficult for my body to maintain balance, and foods and drugs that stimulate or depress the nervous system further compromise this ability. I think that Bob Naviaux’s assertion, that low energy states like chronic fatigue syndrome can produce high levels of reactivity, is true. I must say that I am amazed how the majority of the population consumes things like coffee and alcohol on a regular basis. I feel at times like an outsider not participating in this part of our culture, but I suspect that everyone would be healthier if they didn’t consume these things. Moreover, how can one tell what’s going on in one’s body if one is constantly under the influence of drugs?

I believe the timing of meals is very important for optimal health. There is a popular myth that it is healthy to eat multiple small meals or snacks throughout the day, but I disagree. There are good reasons human beings arrived at the concept of eating three meals a day. When we eat, our digestion shuts down so it is important to space meals apart and not to eat close to bedtime. This is particularly true for persons whose digestion is compromised by Small Intestinal Bacterial Overgrowth (SIBO) and Irritable Bowel Syndrome (IBS), which are common in persons with ME/CFS/FM and in the general population. “Eating on the run” is another recipe for indigestion. Sitting down to each meal without distractions and slowly chewing food is not only relaxing, its healthy.

 

There is a lot of debate about the best foods to eat. I think this is quite individual as long as one sticks to whole foods that are not highly processed or have additional ingredients. I have arrived at my particular diet by paying attention to what works for me. I experimented with vegan and dairy and gluten free diets and found they were not beneficial for me. I have stuck to my own intuitions and observations on what works for me despite the popular trends of the day.

For example, I never felt bad eating animal fats and because I don’t eat sugar or fruit, I find that fats are essential for me to maintain calories. I ignored all the rhetoric about low fat and low salt diets that were popular ten and twenty years ago and just followed my “gut.”

My weight has remained steady and my cholesterol low all these years. I’m fortunate to have access to a lot of wholesome foods as our family has chickens, which provide us with eggs, and a large vegetable garden. We also have access to seafood from Alaska and grass-fed beef from a family ranch. I think one can get creative about sourcing good food without these advantages.

There are affordable programs where one can purchase a share from a local farm (Community Supported Agriculture or CSA), and some natural food markets offer discounts to persons who are chronically ill. Fortunately, I do not have any food allergies, which differ from sensitivities. For those that do, I highly recommend Advanced Allergy Therapeutics, a therapy that has “cured” several of my family members of food and pollen allergies. I also think it is important to avoid fragrances and toxic chemicals in all household and personal products.

The only beverage I consume is water. I did some research on drinking water, which I wrote about in my post “The Water Dilemma.” I purchased a quality water filter based on my research and always have a container of filtered water close by – a glass by my bedside or desk and a stainless steel container in the car. I have never kept track of how much water I actually consume. I simply drink throughout the day when I am thirsty.

Stress and Spirituality
I have often thought that the stress of living with CFS is similar to what happens to a normal person after pulling down an extended period of work without sleep. We’re always pushing the limits of our body’s ability to rest and heal. Having a couple of hours before bedtime to wind down at the end of the day by reading, listening to music or just hanging out with family gives me the best chance to get some good rest at night. I avoid using the computer and watching television dramas after dinner.

My final recommendation has to do with spirituality. I understand that this is a very personal issue. I have been interested in spirituality and religion since I was a small girl. I feel a strong connection with spirituality in music and nature and also in church. My faith was challenged by the onset of my illness at the age of nineteen and on and off for many years. It is difficult to feel at peace when one’s body is at war, but what I discovered is that even in the worst of times, I experience moments of love and grace. So ultimately I feel that this is the most important thing.

My faith is reinforced by attending a church with a congregation of like-minded people who embrace everyone along with their imperfections and brokenness. I don’t actually believe that prayer can have physical consequences, but I know that it can put me in a place of acceptance and give me the courage to persevere.

Ending the Day
I find it helpful to stick to a regular schedule of meals and rest. Benjamin Franklin’s adage “Early to bed, early to rise makes a man healthy, wealthy and wise” makes a lot of sense to me. Like many people with chronic illness, I have struggled with sleep issues. To read more about this, go to my post “Waiting For Sleep.” Despite the quality of my sleep or what is going on with my health, I have found it is best to go to bed at the same time each night and rise at the same time each day.

The stress of chronic illness can play itself out at night. I lived through years of night sweats and disturbed sleep and learned that contrary to popular myth, the best strategy is to remain in bed and get as much rest as possible even if one is not sleeping. I remember the advice my husband got from an old fisherman in Alaska. Fishing often requires working long stretches of time through several days and a night, and when the work is over, it can be difficult to sleep. The fisherman advised my husband to lie in the bunk and get rest even if he wasn’t sleeping.

The recommendations I have described have not by themselves resolved my health issues but they are a good starting point. My healing has required finding additional therapies to reverse systemic patterns of dysfunction, which I have written about in other blog posts.  It is important to remember that we are all individuals and what helps one person may not help another.

Source:http://www.healthrising.org/authors/darden-burns/