I would have never imagined that my journey toward chronic illness recovery would result in a three-month backpacking trip through Asia. Somehow, a continent full of glutenous foods, horrible pollution, and toxic chemicals helped me heal from from Chronic Fatigue Syndrome (CFS).
For most people, chronic fatigue syndrome isn’t conducive with travel and adventure. I am not making the claim that such an experience will have the same effect for everyone. I acknowledge that this is a complex disorder and there may be a number of different variables affecting patients who suffer from CFS. But I will not shy away from the notion that lifestyle and emotional and spiritual health is a huge factor for many individuals struggling with this illness. For more than four years, from the ages of 21 to 25, I struggled with the mysterious and debilitating symptoms that characterize this very misunderstood condition. I underwent severe emotional and spiritual suffering from the awful symptoms of insomnia, digestive issues, cognitive decline, memory loss, anxiety, severe and toxic fatigue, and chronic sensitivity to a plethora of stimuli.
I had to drop out of college and was nearly completely house-ridden for the better part of a year. When I finally was able to go back to school after a year and a half, I could not enjoy the typical college experience. I went to classes, then I’d go home directly to my bed. It hindered my ability to socialize and date. One of the worst parts of it all was that not only did I not understand what was going on with me, but none of my friends did either. I was mocked and talked-down to — people thought I was just lazy and depressed. I lost my self-confidence, sense of self, as well as any sense of meaning to this life.
Struggling To Put A Name To The Pain
I latched onto a theory that my CFS was genetic, because if there was one thing about myself I know, it’s that I’ve always been a very sensitive person. In fact there is no doubt that I fall into the category of HSP (highly-sensitive person), a term used by some psychologists within the last few decades. HSP’s are people who are prone to developing autoimmune disorders and other poorly understood conditions, due to certain traits and genes.
Meanwhile, I was an avid football player and wrestler in high school and received a few fair blows to the head during my career. I could not help but think that those injuries had something to do with the illness. I reached out to any and all medical treatments that were affordable and based on my research, I deemed could be helpful.
I travelled out to California from my home in the midwest to go to an amen clinic, which I’d heard was cutting-edge and incorporated both holistic and western medicine. Unfortunately, the information and diagnosis those doctors gave me, although informative, was not entirely helpful. Their blood tests revealed I had high inflammation in my body. The Spect scan they performed showed that my concussions had indeed affected my brain and that I’d also undergone “scalloping” (a word I could not get over for how terrible it sounds), which is damage that occurs due to a possible result of toxic exposure, infection, oxygen deprivation, or widespread trauma.
In the end, I was recommended a host of different supplements (Omega 3s, Acetylcholine, Gaba) as well as medications like trazodone for sleep and Wellbutrin for focus and cognition. Ultimately in the long term, none of these things helped me manage my symptoms or recover.
The Route Out Of Purposeless Agony
I trudged my way through college, often in such a disorientated state, that I wondered how the hell I ever passed any of my exams. Most nights I didn’t sleep, and I would wake up feeling so exhausted that I put little to no effort in to my appearance. I would go to class looking drugged-out and probably homeless. Being around people generally made me even more exhausted, so I suffered mostly in private.
I went to college because I was told it was the right thing to do — that I needed a degree. I enjoyed studying Anthropology at the University of Iowa, but being in the Midwest, there was pretty much nothing to do. I went to a school that liked to party, so the only activities were bar crawls and athletic events. Suffice to say, I struggled with finding enjoyable activities and hobbies to get my mind off things. Throughout these years of struggle, it never occurred to me that my illness may be partly related to the fact that I felt purposeless.
I went down this route for years, while looking to all sorts of websites offering advice for chronically ill people like me. I spent a lot of time on Self-Hacked, which specializes in ‘biohacking’ and recommends taking hundreds of different supplements and eating a diet that essentially consists of fish and broccoli, and the site Phoenix rising which brings exposure to studies on M.E./Chronic fatigue.
Through the years of my research, I began to notice that a lot of the people who claimed to be chronically ill for a substantially long time, seemed to focus completely on the physical aspect of the illness. I as well, pretty much completely ignored the possible emotional, spiritual and lifestyle connections and focused on treating my biology. I also could not help but notice that all the chatter and advice throughout the blogosphere, seemed to make it so damn complicated. They recommended that you take all these different supplements, at certain times, and avoid certain foods; the pathology had to do with ‘upregulating’ or ‘down regulating’ this pathway and that neurotransmitter. It was all blah, blah blah.
I won’t say that I didn’t gain some valuable information by going down this ‘biohacking’ route and I did find some great supplements that holistic health center prescribed to me based on muscle testing However, I came to realize, treating CFS with diet and supplements alone was absurd and simply not enough to take one all the way home.
It was only when I stopped listening to all the chatter, discussion, and dogma about how to treat this illness and started to listen to my heart, and address my emotional and spiritual health, did I begin to make some real progress.
Journey To The Heart
I committed to returning to my daily Transcendental Meditation practice, which I had given up years ago, mysteriously around the time before I became ill. As time passed, a small shred of inspiration began to awake in my long dormant heart. Gradually, my cold attitude towards life and the world began breaking: I felt my pre-CFS desires and passions for travel and adventure rising to the surface.
After six and a half years in college, I finally got my bachelor’s degree. That was my ticket to freedom. I bit the bullet and made the plans to do what I always wanted to do: backpack Asia.
One of the toughest things about CFSs is it takes you out of your life and traps you in a dark pit. From a day with a decent amount of energy, and the next and you feel like you’ve been hit by a bus.
I decided that if I were to feel spent and exhausted, I was going to do it on the foothills of the Himalayas or on a beautiful beach in Thailand. I made up my mind and said either I live the life I want to live, or I will die trying. I had had enough, maybe I would fail — but I damn well was going to at least try. I packed three month’s worth of supplements, planned my itinerary, and prepared myself mentally.
I hadn’t been able to work the past few years, and had little money saved. But luckily, I received a post-graduate research grant to conduct a research project in southwest china. Since I was an Anthropology major in college, I often took courses on different religions and spirituality. I took an interest in Buddhism early on, and with the help of one of my professors, I had been awarded a grant to study Theravada Buddhism among a minority group in Southwest China. This alone helped pay for a good portion of the trip. I would spend the first five weeks in Yunnan Province China conducting independent research that I would compile into a 20 page report and the rest of the time I was free to roam Southeast Asia. My family were, as one could imagine, extremely skeptical of the idea given they’ve seen me toil and struggle throughout the years. Maybe I would fail but the idea of not at least trying was to much for me to bare.
After 23 hours of travel, I landed in Kunming, China exhausted. The plane rides were doozies and i spent the long hours watching movies with my blue light blocker glasses on, listening to guided relaxations from my iphone and also interestingly, had a long discussion and debate with a missionary on Christianity and Buddhism. That alone took up quite a few of the hours! When i arrived, the first few days there were very tough. Going to SW China solo for the first time is a lot like being thrown into the deep end and not knowing how to swim. The cities are loud and obnoxious and every turn can be a sensory overload. And of course on top of all this, I wasn’t your ‘normal’ traveler/backpacker.
But being thrown into such a foreign environment, completely alone, activated a sort of survival mechanism in my mind and nervous system. A lot of people would say, “yes it is activating your fight or flight system,which is already out of control in CFS/M.E. sufferers, so that can’t be good!’
Yea it probably isn’t initially and yet it suddenly gave me a strong sense of purpose and took me out of myself. Back home, I had always been monitoring myself and worrying about everything: what I ate, my level of energy, did I get enough sleep, how’s my blood sugar level, and on and on and on. I was so worried about my own health, I could never move into a healing state where I was relaxed enough to rejuvenate. Over the next weeks and months, I was so inspired and fascinated by the people I met, the culture and history I was seeing, and the beautiful landscapes I got to trek and hike, that I could finally relax and forget about a lot of my problems.
This is not to say my symptoms entirely disappeared, –they didn’t! And there were a few days where I felt wrecked and laid low in the hostel or guesthouse I was staying at and this provoked a few confused locals or travelers. I assumed people wondered why I would linger so long in bed and why I didn’t go out to bars. It was clear that I still needed to take some supplements, (still was taking all Energetix homeopathic supplements) as if I missed a day or two, some symptoms would flare up but not near to the level I experienced while being home. I still could not drink alcohol like most other fellow travelers, and I still had to pay attention to getting enough rest (no late night party nights). But as my time in Asia continued, and as I fell deeply in love with what I was doing, many of my symptoms began to subside.
The last few weeks of my trip, the only supplement I was taking was bioavailable melatonin. For the first time in so many years, I felt I had a purpose again and felt excited to wake up and experience life
A book I recently read, Tribe, by Sebastian Junger, a world-renowned journalist and anthropologist, really resonated with what I may have experienced during my three-month backpacking trip. In the book, Junger talks about how much PTSD and other illnesses have risen in the last few decades, particularly western countries. He explains how, during times of crisis and war, mental health issues decrease. According to Junger’s interpretation of this intriguing statistic, its the union, sense of purpose and the connection with your neighbors that activates long-dormant reward mechanisms in the brain.
Junger discusses how our modern western lifestyles are so out of tune with our hunter-gatherer tribal past and the neurological mechanisms that produced rewarding neurotransmitters in the brain based on the conditions that existed in a tight tribal group, are no longer being activated because many of us live such lonely, disconnected lives. Many of us spend our days sitting down in isolated buildings only talking to people on the phone, or the computer. Not to mention all the super–processed, unhealthy shit food we eat. In short, our lifestyles are completely contradictory to the communal, physically active and natural lives our ancestors lived.
Junger talks about how many veterans come home from today’s wars and they became so use to the sense of brotherhood they formed with their unit in combat and the sense of purpose they had in the war zone, that they cannot adjust to the disconnected and overly comfortable lives that is atypical of western societies. Junger argues that, for at least some veterans, PTSD stems not from the war but from coming home to a disconnected and technologically-suffocating society that doesn’t promote authentic, social connection and as result, causes despair and health issues.
When I was on my backpacking trip, I was outside all the time doing activities that I loved, meeting people who shared similar views and passions. I went without the common comforts I had at home, such as video games, TV, my own bathroom, constant privacy, access to all varieties of food, and a sense of constant safety that had numbed me to life and put me in a chronic sense of unfulfillment.
Personally, I also think it had something to do with me not being aligned with my spiritual purpose. Throughout the years of being chronically ill, my nervous system was always in such a chaotic state because my needs, my biological and spiritual needs were not being met. When I am traveling, I feel alive and somehow in consequence, I feel relaxed.
Integrating Lessons Back Home
It has been five months since I returned home from my trip and since being home, I have had many experiences that have confirmed that lifestyle and happiness are critical for people with CFS. Since taking a nine to five desk job where I sit down the majority of the day, I have found that unfortunately, some of my symptoms have returned. It is quite interesting because I have found that it seems doing activities that I don’t like or want to do seem to aggravate my condition quite deeply. This is troubling because of course life is full of doing things one doesn’t like to do, I mean we all have at least some obligations right? But quite frankly, the more I have trekked into this journey of CFS and especially after completing my backpacking trip, I am much more aware of the things that are not good for me and don’t really ‘matter’ than I have ever been.
It seems to me that living the traditional western lifestyle is absolutely toxic to my well-being and no matter how much I try to fit in and search for ways to compensate for my symptoms, it just doesn’t work out. Also, I have found it even harder to relate to and communicate with the people I used to call my friends here at home. Their lives are consumed by their careers, what furniture they bought for their house and going out on the weekends and drinking their stresses away. Since becoming ill years ago, already I lost touch with pursuing ‘material success’ because I was not physically able to pursue it but now I have come to realize that not only does trying to live “normally” not feel good to me, why the hell would I ever want to live that way? Life is about pursuing joy, being kind to yourself and others and for God’s sake we shouldn’t take things so seriously!
Moving forward, though my plans are vague, I want my life to be centered around two things: authentic social connection and relationships, and living a passionate, purposeful life. While I know pursuing one’s passions in life is a bit of an overused term, I think this drive is essential for those with CFS or similar conditions. I hope to combine my passion for writing and exploration into a career. I don’t know exactly what that looks like at the moment, but that is the path I am on and it is the path I will stay on until nature directs me towards something else. The way I live now, is a way in which my heart or intuition, if you will, tends to be first in line, calling the shots. The use of my logical/left brain thinking comes in second and helps clarify the directions my heart pulls me toward. This is a complete reordering of being and acting than before I was ill, but I am thrilled to have my heart in it’s rightful first place again. I recently took a job at a coffee shop and while I will not be drinking a copious amount of coffee (still have a sensitive nervous system), I am looking forward to being on my feet all day and talking with customers and co-workers face to face.
CFS/M.E. is a complicated condition. I will reiterate that I do believe that there is a physical/non-lifestyle component to chronic illness recovery and feeling good again. But, I learned firsthand that the spiritual and lifestyle component plays such a critical role in our health, that ignoring it will undoubtedly lead to a lifetime of chronic illness and chronic lack of fulfillment. I am not encouraging or suggesting that people immediately go purchase a plane ticket to Nepal and hop the hell out of here. I only encourage that individuals begin to look into their own heart and start trusting themselves first — not just relying on the ‘scientifically validated’ methods in finding health and happiness.
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