It’s been quite awhile. How have you been? I hope you’re doing well, or at least as well as can be expected with the current state of the world.
Five years ago, I left Easter brunch early. After seeing my ghastly complexion and hearing my wet, hacking cough, my family suggested I go to the hospital. Two days later, my boss sent me home, not to return without a doctor’s note. That afternoon, I was diagnosed with double bacterial pneumonia and from there my condition deteriorated despite three rounds of increasingly-potent antibiotics. After six weeks of fever, fatigue and delirium, I was diagnosed with valley fever–a fungal infection crawling through both lungs. In less than a month, my BMI dropped from healthy 20.8 to a sickly 16.6.
As soon as I could manage getting out of bed, I attempted to return to my normal way of life–minimal sleep, long hours working under an abusive boss, exercising five days a week, maintaining a social life, and trying to be everything to everyone. The fatigue never never went away, but I was somehow able to convince myself and everyone around me otherwise. I realize now my body was begging me to slow down, rest, and replenish. I was struggling in all areas of life, but I refused to admit it to myself.
For two years, I functioned at 60% of my per-morbid ability, pushing harder and harder to make up the difference with brute-force willpower.
After slowly working up to weightlifting 80% of my body weight, in 2017 my body gave out. Over the course of a month, my fitness plummeted and I could no longer do a simple set of body weight lunges without my legs shaking to the point of collapse; for the six to nine days following, an acidic burning sensation coursed through my muscles. My memory failed me repeatedly, I struggled to follow conversation, and the constant mental chatter dissipated. More than anything, I felt inexplicably tired. Even after sixteen hours of sleep each night, I closed my door and took a nap each afternoon at work.
For the past two years, I’ve been taking steps to improve my health. I quit a toxic job, leaving behind a cruel boss and lengthy commute. I stopped exercising for over a year, and then slowly built up to a level, two-mile walk. I saw every type of specialist underwent dozens of complex tests, and have had lab work performed at regular intervals. Things were mostly normal. The biggest concern was my low blood pressure (72/50) and high resting heart rate (124 BPM). Additional findings included several tumors in my lower legs and feet, a benign pituitary tumor, high antibodies for over a dozen past infections, extreme food allergies, leaky gut and nutritional absorption issues, Sjodron’s syndrome, sub-clinical hypothyroidism, poor adrenal function, small fiber neuropathy, and recurrent viral and bacterial infections. Not to mention, I appear to have aged ten years over the course of two calendar years.
In June 2019, I began working with a dietician. I sent in a sample of hair, which was analyzed to identify which minerals my body was utilizing and processing out. My results perfectly supported the ongoing symptoms that my doctors would later call “chronic fatigue syndrome.” I adopted a strict organic and paleolithic diet, eating twelve ounces of pasture-raised/wild-caught lean protein and at least sixteen ounces of low-glycemic, cooked vegetables per day. I supplemented my healthy diet with cod liver oil (to stabilize blood sugar), multi-vitamins, multi-minerals, multi-enzymes, digestive enzymes, antioxidants, potassium (to support thyroid function), magnesium (to counteract high my high levels of calcium), B12 methyl folate, and D3 with K2.
The idea behind nutritional balancing is to allow the body to restore equilibrium with minimal damage. Detoxification is broken into two stages; the first stage involves pulling out toxins stored in bones and tissues, whereas the second stage involves processing the toxins out of the blood via the liver. External detox programs are great at coaxing toxins out of hiding, but can’t necessarily support the body in eliminating said toxins from the bloodstream. Elevated liver enzymes over the last several months suggest that suggest that the hard-working organ is already being pushed to its limits.
The December 2019 follow up was promising. Several mineral levels had shifted, signifying physiological change in the body. The biggest development was that with the small amount of added energy, my body had begun to process out its toxic load, including a substantial amount of cadmium. We added some additional supplements to the above-listed regiment to support energy production, sleep quality and detoxifcation systems: taurine, gycine, COQ10, VSL probiotics, alpha lipoic acid, D-ribose, L-carnitine, and NAD.
In July 2018, the leading valley fever expert told me that the initial fungal infection had passed, but that it had caused damage to my mitochondria–the powerhouses within each cell of my body. As the dietician explained the mechanisms by which electrolytes and amino acids fuel the cells, the mitochondrial dysfunction theory began to make more sense. My body didn’t have the proper fuel (or ability to process available fuel), resulting in poor production of ATP, which is the current of energy in the body. To produce ATP, mitochondria need certain essential raw materials, but the synthesis of these minerals is inhibited by environmental toxins and chronic disease. Some bodies inherently lack the ability to efficiently synthesis these minerals and, so, aggressive supplementation is the only way for someone experiencing chronic fatigue syndrome to climb out of the well.
On a recent walk, I explained to my boyfriend that I think I’ve reached 70% percent of my pre-morbid functioning. He made a strong counter-argument that that number is closer to 40%, or maybe 50% if we’re being generous. The thing is, I’m feeling far better than I was one year ago and, right now, that is enough. My brain fog has mostly lifted, I can walk up a flight of stairs without stopping to rest halfway, and I generally feel good after just ten hours of sleep. Two steps forward and one step back is still progress. Over the course of the last two years, my perfectionism has slipped away and now it’s enough to simply care for my body–because, frankly, that’s all I’ve had the energy for most days. Perhaps most importantly, I feel hopeful. I no longer feel trapped, confused, misunderstood or afraid.
One doctor after another has told me that there is no such thing as “recovery” from chronic fatigue syndrome, but rather remission. But I believe I can recover; I believe that I have the power to heal and nurture my body, and the first-hand experience to know when I need to slow down and replenish my reserves.
My boyfriend recently picked up Dr. Sarah Myhill’s book, “Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis, 2nd ed.: It’s Mitochondria, Not Hypochondria.” The read validated my experience and explained the research behind my experience. It was something I didn’t know that I needed.
For me, chronic fatigue syndrome was the result of a fungal assault on my body, aggressive medical treatment, and the ensuing immuno-confusion (as fungal DNA is similar to human DNA, sometimes leading a body to attack its own cells). In Buddhism, there is a parable about the two arrows. As you are walking through a forest, you are struck by an arrow and experience physical pain. You then choose whether to emotionally engage with the suffering–whether to allow yourself to be struck by the second arrow. I spent far too much time wallowing in self-pity, demanding answers, asking what I did wrong, and pushing my body too far. I caused myself more suffering than was necessary. Over the last year, that has shifted dramatically. I am alive and I have the tools and the knowledge to support my body in its recovery. That is all I need.
For the past decade, I’ve set a theme for the year, each and every year. My word for 2020 is REPLENISH. For the past several years, I’ve set overly-optimistic goals and fallen miles short. This year, my goals were to eat healthfully (supporting my mitochondrial function, in particular), move my body a little each day, and carve out an hour a week for creative endeavors (writing, sewing, cooking). It’s simple, achievable and serves to fill up the tank one drop at a time. If, by the end of the year, I’m able to accomplish anything more than that daily commitment to nourishing my body and nurturing my soul, I will consider it a bonus.
I’m hoping now that my body is beginning to balance out, I will be able to put the health challenges behind me and have the energy to show up here on a more regular basis. Onward and upward!
1. THE MITOCHONDRIA IS THE POWERHOUSE OF THE CELL
2. I’m glad to hear you’re doing a bit better. I need to be better about checking in here and there — not that my past year or so had gone well, leading me to be reclusive. But I’m happy to hear things are improving for you.
If you had stopped in anytime over the last year, you’d have found little more than cobwebs – no worries. I still have a ways to go, but my body and mind feel semi-functional for the first time in so long… I’m excited to get back to writing, though I will likely be terribly rusty for awhile lol. Reach out if you ever need someone to talk to, and I mean it.
I’m glad you’re doing a bit better!
Developing a mindset for living with chronic illness is a Whole Thing, in my opinion. (For me) It involves a lot of grieving your old body/life, unlearning things that many people believe without question but aren’t actually healthy, and acceptance that sometimes thing are out of your hands. It’s rough. Sounds like you’re doing well.
Thank you, Lucy! I remember reading one of your comics that mentioned CFS and feeling the deepest empathy and thinking, “That sounds AWFUL!” Looking back, I was in complete denial of my own fatigue.
Yes, chronic illness really is a Whole Thing… so many things I love have fallen away over the last five years and there has been so much anger grief, sadness and fear. At the end of the day, though, I think the silver lining is that I’ve learned to truly listen to my body and slow down (I had no choice!).
I’ll need to carve out some time to catch up on my favorite online comic! 😉 I hope that you’re journey is going well and that you’re finding solutions that work for you.
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I agree the silver lining is listening to your body. I’m much better at that now than when I first got sick!
I’m doing okay 🙂 my fatigue is mostly much more manageable these days, though with the odd dip and crash.
Wishing you a great recovery, and beautiful health! Good to see you again.
I stumbled on your blog while searching for Digestive Enzymes. It made me look up more on the fatigue syndrome and has made me more conscious of people around going through being tired always syndrome.
It’s good to hear you are doing well. Keep up the Spirit and keep taking action in the right direction. Every Step matters… size of step is just a perception.
Do look up on Lotus Sutra Mantra. It also helps in making the environment around us more supportive and thus increasing the positive effects of our actions.
“Nam Myoho Renge Kyo”
It has helped me heal.