It’s official. My body and brain have officially divorced. It feels like my body is becoming closer & closer to normal (when the air is good) whereas my brain’s progress is glacial.
A few weeks ago, Lisa suggested that climbing was huge for Erik. When he was still really sick, apparently climbing 300 ft up the hill from his driveway made him feel better — hard to relate to that story but I didn’t quite shelve it either. I was starting to hit a wall somewhere around 4 miles of hiking, which I know sounds ridiculous, but my goal isn’t to hike the longest but to continue pushing my body with exercise as a primary form of detoxification. I knew that at some point I would do what Erik did, but the time had to be right.
Well my family visited me a few weeks ago, and probably due to nothing short of raging machismo and feeding on the fuel that was my family’s happiness that I appeared normal from the outside again, I decided to do a 400 ft ascent as part of a 3 mile hike with them. Yeah logic went out the window here, but then again, the discovery that I could hike 40 minutes within touching down in the desert didn’t happen “logically” either. If all attempts to test our bodies happened logically, Erik would’ve gotten to Mt Whitney when he was 80 years old. Well, imagine my surprise when I started feeling better as I really got into the ascent, almost like my body felt like it could run up the hill. I thought I’d crash for sure, but I didn’t. In fact, my legs weren’t even much more noodly than they were from hiking 4 miles flat. It seems that the noodly legs are a function of exertion and time, not just exertion. Therefore, my body seems to be able to exert more if I cut short the time a little bit, and vice versa. That’s my hypothesis for now anyway.
After my family left, I rolled with it. I went on another 400 ft ascent. This time, my lungs felt like they used to feel when I did 7-mile mountain runs in college, or cross-country races in high school: winded and heaving, but not swollen. At night however, I developed this scary sharp pain I’ve never had before, where I could notice the swelling whenever I swallowed or took a deep breath. Very disconcerting, but Erik told me he has the same acclimation issues when he first started clmibing. I thought it made sense actually, that this was due to deconditioning and would thus improve with conditioning, since only a month ago I was struggling to walk 40 minutes at a very measured pace and now I feel like my body actually wants to go running rather than hiking. Maybe mostly rationalization, but I knew I wasn’t gonna go the ER so I might as well test the theory out, feeling comfortable that this wasn’t serious enough to be fatal.
Well I hate to sound like a broken record, but Erik was right. A few days later, I did a 350 ft ascent followed by immediate 300 ft descent and roundtrip back (750 ft total ascent) as part of a 3-mile hike. This time I don’t think I had any lung issues during the hike or at night, or the next day.
The crazy part is: this was the second-to-last hike I made in college right before i got sick, and I remember how difficult this hike was at that time because I had bronchitis. How surreal that I now, after 6 years of ME/CFS and still with it, have an easier time physically doing the same hike that I had trouble with during the months leading up to ME/CFS? I was in denial for so long, and my body is actually improving from pre-cfs.
Today, I did another 500 ft ascent in super windy conditions at sunset (hiked a fourth of the way in pitch black–stupid timing!) and right now I feel great. On the way down from the mountain I felt like making a run for it, but I rationalized that there’s no benefit to running at this point versus the type of hiking I’m already doing right now, so why fix what ain’t broken? Yes even on endorphins highs I rationalize. That must prove I’m still a ME/CFS patient (jk)
On the anaerobic side, I’m continuing to max out upper-body plus abs workouts as I do on all non-hiking days, and I seem to be getting what feels more like the soreness I used to get after working out rather than screaming total-body burn and intractable pain in my left chest I was getting a few weeks ago. Thus it seems that even my heart is improving with exercise, which I didn’t expect at all.
I started famvir 2 weeks ago, and I don’t think that’s playing much of a role in what I’ve described so far, because the two things I was told to expect it to do in the near-term (lower reactivity and help my cognitive abilities) haven’t really been helped at all. Therefore, I’m inclined to think all the improved exercise capacity is just due to the other R&R, rehabilitation and reconditioning. I had some nausea when I first started the drug but it’s more or less worn off now, so I don’t feel much at all from taking the drug. I’ll be starting Valcyte shortly.
Now the ugly: my body is still as sensitive to bad air quality as usual, and I don’t foresee that changing for another few months. Changing oxygen metabolism and anaerobic capacity is clearly an easier game for me than changing immune reactivity. All my friends ask me if that means I’ll be staying in the desert forever. Well of course I’d rather not! But if my reactivity never goes away, then really it’s a no brainer since living in the desert beats the crap out of feeling sick 24/7.