2010: Descent into Illness
I became chronically ill with ME/CFS almost seven years ago, in the late summer of 2010. It started as a flu-like illness that lasted for over a month, and then turned into what seemed like pneumonia. I knew it was really serious when it got to the point that it became difficult to walk. My husband and I were celebrating our 1st Anniversary, and after taking a short hike along the shores of Lake Champlain to watch the sunset, I could barely make it back to the parking lot. I suddenly felt as if gravity was pulling me into the center of the earth. I could barely move my legs, and every cell in my body… j u s t… h a d…. t o…. l i e… d o w n.
My brain was slow and thick, struggling to make sense of things. My speech was slurred, incoming information felt garbled, driving was impossible – my reflexes were slowed, my night vision was atrocious. Sound and light were both excruciating – everything felt like sensory overload. My whole body ached relentlessly. And on top of it all, the exhaustion was completely mind-bending. I had done nothing to warrant such an intense physical and neurological reaction. Instead of walking a few dozen yards, it felt as if I had just run two marathons back-to-back, or climbed Mount Everest without oxygen.
When my health started going downhill, I’d been a cartographer at NAVTEQ, making digital maps for the past 15 years. I’d earned my way to working from home and I had a great setup – including a company SUV, outfitted with gadgets for GPS data collection. The job entailed extensive travel throughout the U.S., as well as some overseas opportunities – with many hours of driving and/or navigating, while collecting multiple layers of data, which would later be entered into a global database back at the office.
This required a skill set that included the ability to think spatially; to memorize vast amounts (over 3,000 pages) of specifications for coding data; to navigate on the fly – thinking ahead and plotting the best way to drive all the streets in a neighborhood with minimal backtracking; and also, to be capable of finding creative solutions to any problem that might arise, whether it was “real world” on a road trip, or digitally, to resolve a quirky coding conflict.
Most of these skills and much of the knowledge I’d gained over the years seemed to disappear. I couldn’t remember even the simplest of things, including some basic, entry-level coding of road geometry. (Hard to imagine, when I had once been the regional “go-to person” for coding extremely complicated areas, like Logan Airport, and “The Big Dig” in Boston!) Suddenly I’d blank out on conference calls when I was asked to report on special projects. I felt panicked about upcoming field work in NYC – I knew my brain wasn’t working right, and I was terrified that I’d have a massive fail in front of co-workers who were counting on my experience and skills.
I was utterly exhausted, sick, and struggling to work only TWO hours a week. I couldn’t even work from home – never mind any travel! Within a few months, after my short-term disability ran out, my long-term disability was denied, and I lost my job. I was utterly devastated. I’d always thought it would be my dream job until retirement.
In the beginning, I quickly discovered that regular MD’s had next to nothing to offer. There were no ME/CFS specialists within hundreds of miles, so that wasn’t an option either. I was actually lucky that my GP diagnosed me with ME/CFS right away, but pacing was his best suggestion. That helped to reset my expectations and avoid the worst of crashes, but it didn’t really bring any big gains.
POTS: “Postural Orthostatic Tachycardia Syndrome” was another acronym I could add to my list of diagnoses. When I discovered that I fit the criteria, I wore a sports heart monitor occasionally to keep an eye on my anaerobic threshold. It seemed mostly futile though, because the threshold was so incredibly low. Sometimes just standing up would send my heart rate up into the 120’s. Laughing could jack it up into the 130’s or 140’s!
Then I found a great Naturopath (ND) in southern CT, who discovered that I had almost no amino acids, as well as severely depleted vitamins and elements of all kinds. After about a year or so of taking bazillions of supplements, including herbal antivirals, and trying various diets, I went from being nearly bedridden, to averaging about 20% of my former self and being mostly housebound instead. I even got a wheelchair for any “big” excursions, so I wouldn’t feel so left out of life.
Eventually I gained a little more from a combination of correcting my neurotransmitter levels (Dopamine, GABA, etc.), and adding ATP Fuel which seemed to boost my metabolism. Throughout this time, I also had passive bodywork appointments once a week. This helped with flexibility (I’ve always been super stiff), it improved my rapidly declining posture, and also supported lymphatic drainage. I’d always feel so much better in the days following the bodywork sessions. Imagine — if only I could afford to have an appointment every day!
For several years, I seemed to plateau at about 30% of my former self. “Good Days” would get me to 40% or 50%, which were however, few and far between. All of this was accomplished with carefully paced “functionality”, needing to rest often, and being careful to not overdo it. This would mean I might get two to four hours in a day in which I might accomplish something. Keep in mind, that “something” would include things like self-care, or making a meal. The window of possibilities was quite small really.
In 2015 I was diagnosed with SIBO, “Small Intestine Bacterial Overgrowth”. I went through multiple treatments over the course of a year and a half, and found that diet was a critical factor in easing some of the symptoms. Since the late 1990’s I had noticed various food intolerances stacking up, one after the other. By the time I became so sick, I was already avoiding dairy, soy, and gluten because of the nasty reactions I’d had. At this point I was quite familiar with navigating the diet restriction minefield, so exploring new avenues didn’t faze me.
I experimented religiously over the last few years, with the guidance of various Naturopathic recommendations: the Rotation Diet, the Anti-Candida Diet, the Low FODMAPS Diet, the Paleo Diet, the Keto Diet, and I even did the nasty “Elemental Diet” for nearly four weeks – which is purely liquid nutrition made up of powdered vitamins and amino acids. (Think what normally goes in a feeding tube at a hospital…)
No matter what, within a couple months, all the bloating, belching, weight gain, and general yuckiness would come back with a vengeance. It always seemed to me that the problem was in my stomach, more so than the small intestine, as SIBO would have indicated. Then in 2016, I discovered I had MCAS, “Mast Cell Activation Syndrome”, in addition to everything else. Thankfully, treating for that helped even more… for a while anyway.