Some happy western photos and discussion of avoidance
when we set out to start doing mold avoidance, I was bedbound, but worse than that even--I was experiencing episodic near-paralysis where I had trouble even talking, at my home in vermont. I had to crawl to the bathroom and even that was arduous. there is more than one axis of improvement/health, so I won't say that there was a single peak, but that was the nadir. Some of the peaks: When we first drove up to shenandoah national park, from the suburban towns in the valley, i immediatley went from one of these episodes of paralysis to sitting up and talking animatedly, i also felt calm and good mood, instead of usual sense of doom. not that impressive. but I found when I spent whole days forest bathing, especially at spots that were fairly remote and not just in a campground with lots of people and bathroom plumes, I became able to walk for short distances, without heart racing/pots (at home my heart rate would go up to insane amounts even from crawling to bathroom and back, and stay elevated for an hour or more), and I became able to tolerate and even enjoy some music instead of it hurting me.
i didnt stay for as long in monongahela national forest when we went, so I didnt quite get to the walking stage, but my cognittive energy, clarity and mood was immediately improved.
some other peaks: when staying at a farmhouse in trampas new mexico in winter 2020, a remote village near national forest land, at high altitude, after an argument with my sister, i jogged barefoot for what I estimate was a quarter of a mile, outside in the packed snow road. with a cervical collar... but also without incurring pain or inflammation afterwards or crashing. now, that doesnt sound that impressive, but in the worst flares i couldnt even be moved much at all without severe cervical pain and crashing and vertigo, let alone RUN. and usually couldnt even walk that far without POTS symptoms, let alone run.
I probably first noticed ability to stand and sit up very comfortably without POTS symptoms, with a low heart rate, on the grand canyon south rim in 2019 summer.
I had improvements in ability to walk for very short distances, and many, many cognitive improvements that allowed me to start reading, on mt charleston, nevada, in summer 2019. my gut health improved a lot, and gut motility, without getting into the details, very significantly improved. I was able to read and talk for long periods of time without getting worn out. while i wasnt always able to walk or stand, bc of my cervical spine issues, my overall energy envelope was greatly improving.
in september of 2019, after doing avoidance for a few months and spending a week in the ancient bristlecone pine forest, or near it, the most pristine place ive ever been, I was able to read all of Dante's Inferno. at home in vermont i could barely read a paragraph bc of brain fog and cognitive issues
I was able to start tolerating sun and sweating normally during this time--which had previously been a major issue
We then spent a lot of time in red rock canyon and lovell canyon. On day trips to red Rock canyon I'd often feel comfortable enough to stand without much POTS. I'd even sometimes walk quite a bit.
Later that fall we tried to find a place to live in northern New Mexico and failed to find a good indoor space, so backslid. However even during that time there were times i remember such as a day in abiquiu new Mexico in February where I got outside in the Echo Ampitheatre in Abqiuiu and didn't just walk but actually climbed/scrambled quite a bit up the sides! I have a video from this from my point of view. I think I got about thirty feet up, could be more, I'm not good at estimating. But this was not just about the total distance but how steep it was and that I was managing to scramble up without too much difficulty. It was also in a cold time of year and I tolerated the cold fine.
When we ended up camping around the edge of death valley in February and early March 2020, I not only had cognitive improvements and improvements in neurological symptoms like sound sensitivity, and improvement in sleep, but I got to the point of walking the furthest I have since becoming severely ill in 2018/2019. I sadly didn't measure the distance or take photos or videos but I walked somewhere between a quarter and a half of a mile I think at the peak... and without POTS symptoms or PEM. I did have a flare up of spine pain after that long reckless walk but that's a structural issue. Also I had a more modest daily average of about 60 to 300 feet (these are total estimates but also that smaller distance was done with a lot of ease. Unlike even *crawling* to the bathroom at home which would shoot my heart rate up to 140 for an hour). I wish I'd documented all of this in a bit more of a detailed fashion but I do feel that it was a very significant improvement and all caregivers would notice this too and attest to it.
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