My Journey with a Chronic Fatiguing Condition

I’d like to share this journey with you in the hope that it may illuminate a path for you. I continue to learn - about myself as well as about how to help others through this journey.

Chapter 1

In late November, 2021 the nausea and fatigue began. I was tested for everything from pneumonia to stomach and heart trouble with nothing found until the blood test that showed elevated EBV antigens, so I received the diagnosis of Chronic Fatigue Syndrome for which western medicine “had nothing to offer me”, according to my practitioner. And in a very real sense, she was right, though I probably could have used some support and guidance. At this point, I became my own science experiment. Scheduling appointments with a naturopath and an osteopath, both 6 weeks out, I was truly on my own as I lay on the sofa with my eyes closed, perfectly content to do absolutely nothing except think, examine, explore.

Being a believer in the concept that we have the knowledge we need within us to heal, and not having any other resources to hand, I lay on my back and started checking in with my body. Were there better ways to do this? Diagnostic tests? Screenings? Probably, but nothing had been offered to me and I did not have the energy to go and find it myself, so I looked inside myself. I mentally scanned my body, moved my body parts to see what happened, poked at myself. And found nothing. Just like the scans and tests that had been done told me.

Having failed to find a physical cause of my symptoms, I chose to examine the possible trauma and stressors that might contribute to those symptoms. I explored fear of failure, fear of success. I looked at family relationships, starting with childhood, looked at present relationships. I wondered about trauma, was there something I had buried. I discovered, not to my surprise, that there are things I had not dealt with, that might be lurking behind my functioning, but nothing that felt traumatic enough to throw me off my game in quite the way I was – unable to do anything. I did these explorations daily for a while, thinking that maybe I could go deeper and find something, but, no.

I did engage my science mind – was my immune system depressed? Did the EBV reemerge because I needed immune support? I tried that and felt worse. I know the theory of die-off and feeling worse before you feel better, but that did not feel like it fit. When I finally saw the naturopath, he did more testing to rule out more illnesses and rule them out, he did. That only left treating the gut and providing immune support. The gut treatment did not change anything and I had already ruled out immune support as it made me worse, not better. At this point, I developed my theory that my immune system was not depressed, that it, along with my autonomic nervous system, were on hyper-alert, pushing my body into freeze mode, disengaging completely, and were in dire need of calming and reassuring that it was safe to allow me to function again. Who is going to believe that? Do you?

And so, I started looking at all the ways to quiet the immune system, including my nightly mental work on simply lying there and convincing every cell in my body that it is safe, reminding my immune system there is no danger, and the same from my autonomic nervous system.

This is not something I talked about a lot and I am sure you can understand why.

I finally made it the 6 weeks to the osteopath appointment. At this time I had stopped all work and spent my days lying on the sofa with my eyes closed – I did this for a full 3 weeks before I started trying to do anything again.

What I did not know about classic osteopathy could fill a book, but, when a doctor says to you, you will get better and I can help you, you can’t help but believe him. Especially when he then tells you that you have the tools you need to heal within you. This was particularly helpful because I had so recently been told that there were no tools outside me to help. But osteopathy is an outside tool that helps the body to tap into its healing capacity. And, slowly, it has. Much more slowly than either the osteopath or I had hoped or expected, but it is happening. It has been just over 2 years.

Premature death? of Longevity?

I recently read an interview of Peter Diamandis, recently named by Fortune as one of the “World’s 50 Greatest Leaders.”, in which he bragged of all the technology and research devoted to fighting aging and death and it became apparent to me that these are not people who are actually interested in improving longevity for the human race, or even the residents of this country, but for the privileged few. What we know, if we are honest, is that the way to move the needle on longevity, is to address what is happening for those who are dying in their teens, their twenties, thirties and forties. And to do this, we have to invest in addressing inequities and prejudice. We have to invest in safe and affordable housing, access to healthy food, education, and, most of all, oppression and fear. These things are not as glamorous as stem cell research, supplements and treatments and no individuals stand to get rich from making them happen but, like clean water and antibiotics, they will increase healthy life expectancy for many more people than any of the technologies being invested in. and will do so more quickly.

I am a believer in scientific and technological research. I am sure there are things we can learn to the benefit of all of us. I also know Maslow’s hierarchy, which, while not a precise description of human need, reflects the basic human needs that must be met before we can even think about quieting our nervous system, decreasing the production of stress chemicals or engaging in lifestyle changes to be healthier, let alone investing in technological advances to extend healthy life beyond 90 or 100.

I would like to see the leaders who are leading the charge for affordable housing, access to healthy food, education and an end to oppression, earn the title of World’s Greatest Leader. I read The Wizard and the Prophet and I know that there are differing opinions on the path to achieving these goals. One is technology, but they both entail understanding how the natural world works and what we need to do to either live within its confines or how to expand its possibilities. But they are still talking about the possibilities for meeting those basic needs and not how to help people of means to have more.

Can we view investment in the longevity of those who lead the shortest, hardest lives as our highest priority? What is true is that we actually have all the tools we need in our toolchest to do just this. What we lack is the political or social will to invest the resources we have in this. And philanthropy, while immensely helpful where it is applied, has not been enough to change the systems that foster inequality. We need a concerted effort to make life better for those in the most need if we are to truly move the needle on life expectancy. We need to effectively decrease the incidence of premature death before we start postponing death for the healthy.

News

Hard to find the time to post much content, and this fall was not exception. 

I am proud to announce two accomplishments that have happened almost simultaneously and a change in the office as a result..

1.      I passed my exam and am now certified by the Integrative and Functional Nutrition Academy. I proudly display IFNCP after my name. Working towards this certification allowed me to review the basics of the nutrition work I do and to learn from some of the best and brightest in the integrative nutrition community about how they practice and what they believe is important. It served as both an affirmation and an update of the work I have been doing and I have gained both new insights and a credential I proudly display.

2.     I have been hired by Fairview Hospital to facilitate the community health work I am so passionate about. I am tasked with facilitating the creation of a network of providers and to engage the community in making sure we are prepared to meet the health needs of all in our community in our changing health and financing environment. I have been excitedly talking to lots people, convening working meetings and working with the state and federal government agencies to make sure we are making decisions based on the best information possible. More importantly, I am working to make sure that all voices are heard in this discussion so that the health care our community gets is the health care it wants.

Because of all this new work, my colleague, Eileen Bote, RD, LDN, IFNCP, will be seeing patients in my office on Fridays. I am very excited to welcome her . Please see her bio on my about page and know that you can make an appointment with either of us and get the same approach and the same high quality care.

Food Is Medicine

Our food supply and our environment are under attack. We are consuming chemicals, such as glyphosate (Round-up) and emulsifiers as well as genetically modified crops whose unintended consequences include increasing our exposure to glyphosate as well as introducing unintended genes with poorly documented consequences into our bodies. Much of the food we eat is nutritionally deficient and most packaged food is filled with chemicals that the human system is unfamiliar with at best, and  at risk from more often.

So, how do we take all the information we receive about how to eat and go out into the world and actually eat?

In a perfect world, all the food we eat would be grown organically with minimal chemical input and would be grown from non-GMO seed. Our animal protein would come from animals raised outdoors that get exercise and natural food sources. We would drink mostly pure, clean water and be able to enjoy our coffee, chocolate and occasional desserts or sweet treats. We would walk at least an hour a day in our daily lives and get most of our exercise through activities of daily living. We would have our hands in the dirt occasionally and come in contact with nature at least weekly.

The reality is that living this way is a challenge in our culture. If I try to eat as specified above, even without eliminating food groups, but simply try to eat whole food that has been properly raised and minimally processed, my options would be limited. I would begin to get anxious about where I was going to get my food from. Can I get to the store that has this food available to get what I need in the house? And what about when I eat out? What restaurant can I go to? What can I order? And, visiting friends – they might try to poison me in their ignorance.

Fortunately, most of us possess and amazing amount of tolerance and resilience. So, as with many things in life, there is the need to find balance. It is important to understand the risks of occasional exposures versus regular exposure. For some people, pesticides make them immediately ill and they cannot tolerate occasional exposure; for others, their detoxification system works well and they can manage the exposures. For some people, gluten sets off a 6 month autoimmune cascade that can perpetuate some nasty autoimmune illnesses, for others it will simply cause a spike in blood sugar and increase carbohydrate cravings. And for some people, peanuts will kill them. For those who have severe reactions, it is imperative to identify the foods that that are dangerous, and, equally imperative, to be able to put the other concerns on hold in social situations so as to not create extra stress and social isolation.

For those without these severe reactions, the first thing of importance is to know that eating well most of the time is protective againstmany of the potential ill effects of exposure to foodsthat are less healthy.  Whole real food contains many nutrients that support a healthy immune system, a well-functioning brain, and abundant energy.  Therefore, it is helpful to eat these foods whenever you can. Second, it is important to not become obsessed with ‘rules’. Rules generally tolerate being bent and even broken sometimes. I have a friend who needlepointed a pillow that says Perfect is the Enemy of Good and I quote this often. Food, good company, a relaxed environment, these are nourishing and life-giving. Stress is a killer, as is isolation, at least as dangerous as consuming some GMO food or food treated with pesticides. It is good to avoid the toxic foods and chemicals in our environment as much as possible, to do our best to minimize our exposures to things that may stress our biochemistry.  It is less healthy to create high levels of stress in working towards this. Each of us, in our minds, needs to weigh, to parse all the pieces of the equation and come up with a formula that allows food and eating to contribute to our overall well-being, not to detract from it. The truth is that food is nourishing and nurturing and it is a good thing. Eating should be a pleasure. Relax and enjoy food!

Here are some resources for sorting out the technical and access information:

www.ewg.org - the Environmental Working Group evaluates pesticide residues in produce and provides other guides to food and nutrition

www.berkshiregrown.org - provides information on local farms where you can buy real food

Why you need a nutritionist

Did you know:

• 70% of your immune system is in your gut

• Your gut has its own brain – the enteric nervous system

• What you put into your body impacts your gut and therefore every aspect of your health

• Food is information; it signals the body to release hormones that can influence genetic expression and well as providing the nutrients we need.

• Medications have an impact on how your body uses nutrients and they are affected by the foods you eat

• Stress can change the environment in your gut and contribute to food-related symptoms

• Many chronic illnesses can be mitigated through diet and lifestyle changes

• Food chemicals can interfere with the normal functions of the digestive system and metabolism, leading to chronic illnesses

Did you know there is a documented relationship between:

• Pesticide exposure and ADHD

• BPA consumption and behavioral problems

• Gluten and autoimmune disease

Did you know:

• Cruciferous vegetables support your body’s ability to detoxify

• Protein is necessary for your body to detoxify

• Dark red and blue fruits and vegetables are anti-inflammatory

• Gluten and dairy can be pro-inflammatory

Did you know that there is evidence that changing what, and sometimes how, you eat can decrease your risk of diabetes, heart disease, obesity, alzheimer’s disease, and help to alter the course of those diseases as well as rheumatoid arthritis, autoimmune diseases, many digestive disturbances, lyme disease, chronic fatigue and others.

A good nutritionist, can not only help you figure out what you need to do to be healthier, a good nutritionist can help you figure out how to overcome the barriers you have to actually make those changes. 

A good nutritionist is your ally in changing your behavior around food.