Thanks once again to Darden for allowing Health Rising to republish an article (originally titled “Lifestyle Recommendations for Optimal Health” from her Fibrofriends blog
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 1970’s doing Transcendental Meditation. My meditation practice was later influenced by Body Scan Relaxation Technique, Centering Prayer and biofeedback skills so now it is a of 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 flu’s. 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 course this is 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 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 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 fishermen 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.
- Find more of Darden’s blog posts here.
What lifestyle choices or tips can you add? What diets work for you? How do you deal with stress? How about pacing – any tips on the best ways to pace? Or sleep? What helps you sleep best? Please let us know.
Interested in telling your ME/CFSFM story? Feel like you have something to contribute? Please let us know via our Contact Us form.
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Darden Burns has had ME/CFS/FM for over thirty years
Darden became ill with a chronic undiagnosed health disorder in the fall of 1973. Her symptoms have included extreme fatigue, headaches, eyestrain, insomnia, adrenal exhaustion, food and drug sensitivities and beginning in 2001 muscle pain and dysfunction(fibromyalgia).
She has experimented with many different treatments and contributed several blogs to Health Rising. More blogs can be found on her Fibrofriends webpage.
A classically trained musician, she and her husband live on Bainbridge Island overlooking Puget Sound and Mt. Rainier.
OMG, Darden! I’m new to CFS and this forum. I just read your lovely post and nearly fell out of my chair when I read that you live on BI! So do I! Would you like to meet somewhere for coffee (or an alternative beverage!)?
You never know! HR is going to produce a way for people to find each other this year…
I appreciate your experiences and revelations. I do envy your “nap”. Although my body shuts down every 2 hours, requiring horizontal rest, sleep is a rare commodity. Even sleeping pills at night time only last a couple hours.
Since quiet, horizontal rest does help, I have found that the gravity chairs work really well for this. They are convertible, inexpensive, and can even fit in the car.. And simple foam earplugs work wonders whether resting or trying to sleep.
A gravity chair sounds interesting! How do they work? Or can you or someone give us a link to where to get one or what they are?
Thanks
Thank you so much for lovely insight to your daily routine! If my daughter could do a fraction of this she would be over the moon…or maybe just happy to move. Her ME/fibro/EDS allow her a few steps a day if she wants to save some energy for a read or to draw and write. She has her routine which requires a carer ( her partner or myself). Meditation, humour and company are saving her sanity… all done with a gentle whisper.
What I’ve discovered is what works for one may not work for another. I am disciplined about my 3-4 gentle yoga classes a week but give myself leeway on the rest of the days. I too have found meditation to be helpful & take naps as needed. Food has no effect on my symptoms. I am agnostic but understand that others find comfort in their religion. I loved the books “How to be Sick” & “How to Live Well” by Toni Bernhard, a Buddhist, to be extremely helpful. Ageing is making my symptoms more difficult to manage. I am thankful to live in a state where I have access to legal marijuana.
Kate, which strain of cannabis helps you? Do you know what the TCB level is? I empathize with your observation that ageing makes our symptoms more difficult to manage. I never thought I’d start “ageing” this soon! I’m starting to understand why there’s a common perception of grumpy older women. It’s effing peri-menopause and menopause! You can’t prepare yourself for it until you’ve been through it, right? I’ve worn 2 superplus tampons at the same time and 2 pads and still leaked out in public within 1 hour. Never had that kind of problem before. I’ve been reading about the historic witch trials and wondering if the broomstick medicine used was to primarily deal with the effects of menopause and the feeling of flying was just a side effect.
Medicine is so individualized. Drugs have precursors, and precursors have minerals or nutrients which form them. The body prefers to take in nutrients and synthesize its own drugs, but if we have mitochondria, methylation problems, etc. we may need a little help from drugs or partially synthesized formulas, like cannabis. So you find more of an effect from the buds of the cannabis plant bypassing your digestive system on its way to your bloodstream. It’s not a cure but it helps.
I find the leaves dark green vegetables, berries, cloves and some other foods which provide phenolic acid, and/or choline to be helpful to my homeostasis. I was exposed to organophosphates as a fetus, which damages acetylcholine receptors. Interestingly though, nightshade plants which contain atropine (which lowers acetylcholine levels) should make me feel worse. But once in awhile I find a small amount of potatoes, tomatoes, etc. will give me a boost. I’m not sure why, though it could be that these foods contain nicotine which is also received by the acetylcholine receptors. I’m careful not to keep nightshade plants in the fridge as this builds up a carcinogenic gas.
Interestingly, PubMed contains a number of studies using food and essential oils as medicine. Love combining eating with science!
I live about half an hour north of Seattle during the winter months. I’m a snowbird during winter months. You never know where you might meet others. Resting is essential to me during the day, most times I do not sleep, but just being horizontal for an hour or two during the day seems to help. I do not sleep well at night.
Lovely post and good sound advice which will work for some of us but not all as we are individuals and our bodies are different.
Your body will tell you want it can and can’t do,just listen to it.
I’ve had M.E. for 27 yrs now and have learnt that rest is the ultimate key to helping with debilitating condition,
Pace yourself according to how you feel each day,this illness won’t allow us to do much or overdo things,it controls us in a way.
Hope in on the way though,I’m attending an M.E. conference tonight in Norwich UK ethereal autoimmune studies and trials are happening with a new drub called Retuximab and Finnish scientists who have been researching for years are pretty excited this will be the way forward.
So leaving you all with hope for the future,we need some good news for us don’t we??
Jean, if you see this post in time –
Could you find out if the Rituxamab trials are taking baseline acetylcholine from individuals? 70% of patients do no better or much worse. Dr. Nancy Klimas has said there should be a way soon (or now?) to qualify who may benefit and who may be hurt by Rituxamab. I’m also wondering if those who have organophosphates in their urine would react badly to Rituxamab.
In agreement with you on diet! If there were a “magic bullet” diet that worked for a large segments of ME/CFS patients, wouldn’t we know about it by now? That said, a sturdy diet of whole foods, whatever appeals/feels right, can only help. In my case, whole grains, veggies, and ample animal fats (meat and dairy) seem to be the way forward. The challenge is cooking. It’s exhausting! I have a culinary background, which I’m putting to work in developing strategies and recipes that can work for someone at a pretty low level of function (I’m at @20 lately). At some point, when I am stronger, I would like to write it all down to share.
I hope you get strong enough to put your culinary skills to work Laura!
I noticed that many said a nap and specifically, getting “horizontal” for a while each day helped. I sleep in an arm chair as for the past couple years it seems the most comfortable.Any thoughts on actually laying horizontal vs. Sleeping “kinda” horizontal??
I don’t know but getting some sort of horizontal is really important. I wonder about my legs up more when lying horizontal.
Thank you for sharing. I have a similar routine which does help.
I’ve had ME my whole life. I was sickly from birth. I feel lucky to have the ability to microwave whatever frozen meal is in the freezer when I’m hungry.
I lived my whole life like you are now, and didn’t even consciously realize I was doing anything special or different than the rest of the world – didn’t fully comprehend I was a “sick” person – because everyone told me it was nonsense (including every doctor I ever saw) and that I was lazy and should see a psych., until this cruel disease decided to manifest itself loud and clear a few years ago. Had I had knowledge that this kind of crippling disability could occur from pushing through the pain and illness I would have consciously dedicated my life to my every activity – to my health. Instead, I dedicated my life to proving everyone wrong that I was a lazy loser, and as a consequence I completely lost my ability to function in this world.
I always wonder if this is what happened to Whitney Dafoe too . . . if he tried to defy his physical weaknesses and ended up disabled for it.
If only the medical community would take this illness as seriously as they take other disabling diseases, and treat us as valuable patients and useful members of the broader community, instead of garbage and a waste of their time, ME patients could be forearmed and forewarned of the consequences of trying to push through the pain and illnesses. If the countless physicians I desperately begged for help had told me that continuing to physically exert myself would cause me to end up bed-ridden for the rest of my life, I would have conducted my whole life very, very differently. Instead, I was ridiculed, mocked, and thrown out of doctor’s office after doctor’s office . . . until I woke up catatonic one day. I’ve never gotten up again.
I would give my eye teeth to complete even 1/16 of your shower routine once every 7 to 10 days.
I go to bed same time every night: 8:30-9:00. That does not mean I sleep. Have a hard time with getting up at the same time every day despite what kind of night I’ve had. At times I feel I need sleep where I can get it even if that means catching a few hrs into the morning. Other times even if I’m not sleeping I lack the ability to get up, physically feeling like the life has been sucked out. Its hard to believe this is merely a will power issue. The few times I’ve tried forcing my body to get up at a decent hour each day it has not worked out well, body & mind like a zombie all day. Does anyone else struggle with this?
Yes! Mornings are definitely my worst time. It doesn’t matter how much sleep I get, come morning I feel as though I had no sleep. In general, I need to be in bed for about 10 hours to get maybe 3-4 hours of sleep. Though that can fluctuate wildly. When I haven’t slept at all in the night, or very little, then I ignore my “routine” and try to sleep throughout the day whenever I can, and am very grateful for any sleep I get. I know this goes against all sleep hygiene rules, but the importance of sleep to health overrides all other considerations for me when I’ve had a sleepless night. Having said all that I do try to maintain a regular sleep schedule, and do my best when I can manage that.
Hi there folks . this is such an insidious illness . it has finally crept right up on me from fm with functionality to the point of total exhaustion and the feeling i have dementia . I’ve pondered such things as candida which i may talk about at some other time but more recently I’ve opened my eyes to a few other things . what kicked it off for me was the visit to a woman here in nz who is a biochemist . i went to see her about my mental health ,poor memory anxiety and absolute fog .she had a device an oglioscan which i have to say i am skeptical about but hey she has a phd with honours from a swiss university in biochemistry.this device measured minerals and heavy metal toxicity and it was said that i have the inability to eliminate heavy metals due to a block in sulphur conjugation. so i look up sulphur conjugation and i find a pdf titled The Detoxification System Part 111 :Sulfoxidation and Sulfation written by a Mark Donohue. This article is a gem ,in a way i can see how the disease process has affected me over time, and maybe whats coming next ,unfortunately. In this article there is advice on some foods and supplements you should or shouldn’t have depending on your metabolic state . Make sure you check out his other pdf s on different aspects of metabolic processes it will give you an incite into why you are like you are . for me I’ve just stumbled across this so will be trying to work things through to how it may apply to me . i feel i have a toxic load from work antidepressants a lifetime of mercury amalgams etc etc . i basically feel poisoned have lost 12kgs from a75 kg frame run out of energy feel like i can’t breath enough oxygen . these articles are interesting and strangely enough every recent scientific research paper that i have read about methylation in chronic fatigue people is already covered here with the symptoms that people suffer from having this detox problem . sory about not doing a link I’ve forgotten how and don’t have the energy to figure it out
I know sometimes when having trouble getting to sleep I use a tip I read somewhere which is : rolling your eyes back (eye lids closed of course). It can signal the body it is ready to go to sleep. It does not always work but it seems to produce some noticeable reaction. Odd but true. And sometimes it works. No drugs, no cost, no side effects….give it a try. I would be extraordinarily happy if it helped even one of you.