I’m very sick and have been for six years.
No, this post is not about a hike or an adventure outdoors. I wish it was. This is about something I’ve been going through for a very long time, and I’m ready to share my story.
Our longtime readers may remember when I got shingles on the Appalachian Trail in 2013. Well, I never regained my health. Since then and still to this day, I’ve seen dozens of doctors spanning the entire country, from New York City to Palo Alto.
Debilitating fatigue is my main symptom. Headaches, neck pain, buzzing sensations, poor sleep, muscle and joint pain, chemical and mold sensitivity, and other unpleasantries occur daily. My blood work always comes back near normal. Doctors are stumped.
The first round of medical professionals tended to arrive at simple conclusions. During sub-10 minute appointments, some told me to wait it out. Others told me to drink more water, to take extra vitamin D, or implied that depression was the cause of my problems. I’m frustrated, but definitely not depressed. Some doctors admitted they didn’t know what was wrong and sent me to specialists. I had to wait over six months for an appointment with some of these experts, but even they were unable to help.
My energy level remained low. It was stuck at 35% of normal.
Meanwhile, I tried acupuncture, deep breathing techniques, craniosacral massage, exercise, various diets, EMDR, meditation, dozens of supplements, and numerous other “alternative” solutions that didn’t require doctor referrals or prescriptions. Few of these remedies or practices made any difference, and those that did only helped a tad.
In 2015, I traveled to the Mayo Clinic in search of better answers. Their doctors and specialists ruled out many of the same big name diseases that previous physicians had. Based on my symptoms, they diagnosed me with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). It was nice to finally have a diagnosis, but the Mayo Clinic’s treatment plan was underwhelming. It consisted almost entirely of good self-care practices I had already adopted.
After six months of following the minor tweaks the Mayo Clinic made to my treatment plan and with no improvement in my condition, I decided I needed to keep searching for other possible causes and solutions to my extreme fatigue and pain. Eventually one doctor ordered a more thorough Lyme disease test — this is now 2016, and the results came back borderline positive. Based on that test and my history of hiking in tick-prone areas, she decided to treat me with antibiotics. When my symptoms still weren’t resolved after a month, she passed me on to a Lyme specialist.
He was much more aggressive in his treatment approach, asserting that chronic Lyme disease requires long-term antibiotic treatment. So, I did it. In October of 2016, I had an IV, called a PICC line, semi-permanently inserted into my arm. The line ran up my vein, stopping next to my heart, to enable the most effective administration of daily antibiotics. My symptoms worsened while on the powerful antibiotics, and my energy dropped to 15% of normal. The doctor said this might be a Herxheimer reaction, meaning that the antibiotics were killing bad bacteria, leaving residual toxins to clear out of my system.
I pushed through my extreme exhaustion, continuing the treatment for ten months. Seeing no improvement, we finally removed the PICC line. To my horror, my energy level didn’t bounce back to pre-antibiotic treatment levels. I seemed to be stuck at a new normal that was even worse. I was now essentially housebound, with only enough energy to leave once or twice a week, mostly for medical appointments.
Going back to the drawing board, I looked through all my health notes and decided to re-investigate the onset of all my suffering: shingles. I asked to be re-tested for shingles (herpes zoster), and surprisingly my blood work came back positive. My body was still actively fighting the shingles infection, over four years later. I started taking an antiviral, and I convinced my primary care physician to refer me to Dr. Jose Montoya, a chronic fatigue syndrome expert with interest in the viral onset of ME/CFS.
I began seeing Dr. Montoya at Stanford’s ME/CFS clinic in January 2018 and still am to this day. My treatment so far has mainly consisted of antivirals and one anti-inflammatory drug. Dr. Montoya also stresses emphatically that I am not to overexert myself. “No crashes,” he repeats. Burning through my small energy reserve for a day could seriously impede my recovery. I have not seen any improvement yet from the antivirals but am told it can take years.
When at Stanford for my appointments, I have also been participating in research studies. I’ve helped with two so far: a neuroendocrine study and a brain MRI study. I’ve also registered to donate my body to their biobank for a postmortem study (don’t worry, I likely have many more years left, though my quality of life is low). I’m hopeful research like this will one day lead to treatments for ME/CFS and aid the millions of others who are suffering from this terrible disease.
Most recently, my new local doctor in Colorado discovered some elevated lab tests, indicating I also have mast cell activation syndrome (MCAS). And a physical therapist diagnosed me with hypermobile Ehlers-Danlos syndrome (hEDS). Quite a few ME/CFS patients seem to have these co-existing diseases. I’ve started taking antihistamines to counteract MCAS. These medications have given me a tiny amount of improvement in energy, though I’m still mostly housebound.
And that is where I currently stand. I apologize that I’ve kept my health problems hidden from everyone I don’t see face-to-face.
One reason I haven’t discussed this until now is that many people misunderstand chronic fatigue syndrome. Perhaps the name of the disease makes it seem trivial. Perhaps it’s because I don’t look sick. A common reaction, even from doctors, is to assume I’m being lazy and fabricating a disease that doesn’t exist. I’ve never been lazy in my life — not in school, sports, my job, or thru hiking the 2600-mile PCT. If anything, the opposite is the case — I work too hard!
People’s snap judgments about me and my disease can be hard to take. They say, “Oh, I’m tired too” or “You should exercise,” not grasping the seriousness of my condition. Sometimes the energy required just to shower is exhausting, leaving me unable to function for the rest of the day. I wish with all my might that I had enough energy to do more, but ME/CFS is a physical illness. It can’t be overcome by positive thinking.
I could write pages about my illness. But I also want this post to be about someone else — Chris. He has been by my side through it all.
He stopped hiking the Appalachian Trail with me when I became too sick to continue. Then he found a full-time job with health insurance to support me, since I don’t have the energy to hold a job. A couple years ago he even began working for an innovative nonprofit that helps people, especially underserved populations, improve their health.
Chris shares my desire to be proactive, to try and understand what’s happening to my body, and to ceaselessly continue searching for a cure. Unfortunately there is a lack of consensus in the medical community regarding which ME/CFS treatments are effective. When a treatment shows promise but is expensive or logistically challenging, he is always supportive. He continually reiterates, “Health is #1.” Then, together, we find a way and give the new treatment idea a try.
We also make each other laugh every day. That might mean being goofy, dropping a good pun (okay, so there’s no such thing as a good pun), reciting a Tommy Boy one-liner, or leading Cheep Cheep into some Calvin and Hobbes-esque mischief. No doubt you’ve heard that laughter is the best medicine. For a deeply challenging, confusing disease like chronic fatigue syndrome, humor really is one of my best treatments. It sounds basic, yet it’s so important.
Sometimes dealing with this disease is emotionally difficult for us both. The sheer duration of being sick for years takes its toll. There are many unknowns, fears, and frustrations with ME/CFS. Chris is a master of patience. He reminds me to take it one day at a time. And when I’m feeling sad about the uncertainty of it all, he does the simplest and kindest thing– he hugs me.
Chris also realizes that life is a balance and shouldn’t only be focused on the medical side. Fueling my love of nature and adventure is important. He concocts low-energy variations of our former activities so I can still participate. Sometimes this means finding a remote area with a nice view just a hundred yards from a trailhead where I can sit with my binoculars and camera for hours, while Chris hikes solo up a mountain.
Back at home, Chris helped build large planters on our condo’s patio, bringing native plants, birds, bees, and butterflies right outside my window. So, even on my worst days, I get a dose of nature.
We mostly write about hiking on this blog, but we both love to bike, too. When I lost the ability to pedal a couple years ago, Chris began researching electric bikes so I could join him with less energy expenditure and no joint pain. A neighbor sold us their used e-bike, complete with a throttle that allows me to to ride without pedaling. Even e-biking drains my energy quickly, so I can’t go far, but at least I can once again access the bike path along the Poudre River that I love.
After a California doctor’s appointment last winter, we visited family in Los Angeles. Chris found a bike shop that rents tandems along the LA River. He pedaled for us both, enabling a great mini-adventure. This is just an example of the kind, thoughtful things he does for me.
Chris helps with all the non-glamorous day-to-day tasks as well. Over time he’s taken over grocery shopping, cooking, dishes, laundry, and other household chores. This allows me to save my energy for doctor visits, treatments, and medical paperwork.
Dr. Montoya gave a lecture at Stanford where he used my case as a textbook example of an ME/CFS patient. One of my favorite parts of the talk was when he said I was happily married to “the most beautiful guy…an example for many of us.” It’s true.
Okay, you get it. Chris is the best. But I simply can’t understate my gratitude. And I wanted to shout it here so the whole world knows (or at least you, friendly reader of this blog).
I hope people will be extra kind to Chris in return. I’m not exactly sure how, but some ideas would be: following his minimalist Instagram account @walkingpace, discussing urban planning, art, bicycling, or climate change solutions with him on Twitter @inabstract, sharing his Pacific Crest Trail photography book with friends, or, if you happen to see him in person, invite the man for a beer, a bike ride, or give him a great big bear hug.
I recognize that sometimes people want to help me, and for that I’m grateful. While I don’t need treatment suggestions (I’ve already got a long list and am still following Stanford’s regimen), if you wanted to help, you could make a donation to ME/CFS research. Another simple way is to share a song in the comments below. I’ll put them all in a playlist and think of you and your support each time it plays.
Life since I got sick has been hard. Very hard. But I’m grateful for what I do have, especially for Chris. I’m also thankful for doctors, researchers, loving friends and family, and grateful I can still explore our incredible natural world a little.
ME/CFS research is progressing, and I have some treatments still to try. I’ll keep smiling. And I won’t give up.