There’s this saying we have amongst us rookies in the biotoxin avoidance game: “I hate it when Lisa & Erik are right.”  It’s not out of disrespect or obstination, but rather, the ideas they’ve conveyed to us are often such inconvenient, maddening truths that we hope that they’re not true.  One case is when Lisa told me doing extreme avoidance may be the point of no return, and that I may not be able to tolerate this house which felt fine at the time & was a house in the desert which I moved to in order to try mold avoidance!  Another case, same idea: I decided to commit to biotoxin avoidance during preparation for a clinical trial with Ampligen because my experience  living in a trailer in a place that’s considered a “somewhat good but far from pristine” location enabled me to make noticeable improvements & I wanted to max these out since this was a drug-free approach.  I never expected that after extreme avoidance, I wouldn’t be able to tolerate this location.

This last week put these ideas and more to the test.  It has shown me just about everything good & bad to do with my current phase of avoidance.  As I mentioned previously, I still have major heat sensitivity issues, so I was forced to leave the desert as the temps were kicking up to make getting solid sleep in an aluminum box nearly impossible.  For the last week, I wasn’t able to get my usual 9 hours of sleep, which is still the magic number my body needs to wake up feeling rested.  I got somewhere between 6-8 on every night.  Although I was feeling rundown, I was still able to be out and about every day.  I was able to drive 4 hours a day en route to my summer refuge from the heat.  I honestly thought not sleeping well for a week straight would turn me into my old CFS self, or at least close.  I was very fortunate it did not.

However, I  was not able to sleep in that house in the desert this time, with temperature control and a progressively more potent sleep cocktail of melatonin, benadryl, and restoril.  Yes Lisa was right.  

After that, I hit the road again & then came full circle with the “somewhat good but far from pristine” location, including a state park that felt pretty damn good to me back then.  This time, it felt straight up toxic, and I did not feel like myself there.  Back when it felt relatively great, I was not yet “unmasked”, whereas this time I’m at the height of my reactivity, which goes way up before it goes down during avoidance.  For these reasons, I understand why this place felt so much less tolerable.  As soon as I got out of that bad zone, I felt my vision clear up and that sense of my brain lift from a catatonic, go-thru-the-motions state.  The plus side is that I hiked 3 miles even while I was in this bad location, and did not totally crash the next day. I did however, feel the beginning stages of PEM, where my legs were occasionally shooting with severe inflammation.  The full-fledged version just never came.

So to wrap up, the bad: I realized just how f-in reactive I am, which Lisa warned me about by saying places which felt fine before “unmasking” may be totally intolerable this time around.  This makes finding a place to do extreme avoidance much more difficult if I still want to have convenience & culture within a short drive.

The good: I’m driving 4 hours without rest a day, even when I feel like crap, without crashing.   I was able to hike for 3 miles in a place that felt bad without crashing.  My constitution is definitely stronger.  There’s also a building case of cause & effect, where I know that once I get to a good location, I”ll be back to my working/hiking self, as opposed to freaking out that this “CFS feeling” might stick around this time, or that this crash might just not go away.  This type of confidence goes against the very day-to-day unpredictability that was inseparable from ME/CFS in my past.

My greatest fear now is that because I experienced feeling great from extreme avoidance, I won’t be able to spend time in certain cities I love which my body reacts to.  This is potentially depressing & devastating thought to many people I talk to about avoidance, whom always ask me whether there’s an escape plan from the desert.  When reactivity comes down, maybe I”ll be able to tolerate more, but from my observations of others doing this exercise for a long time, it gets better but doesn’t go away.  Lisa for example is no longer that reactive but she is still clearly bothered by the big city.     Erik lives in Reno but not exactly in a practical way dodging plumes left & right.  There is always something common that triggers inflammation in both their cases.

I’m trying not to let this bother me too much.  I would feel too selfish to expect to have it all again, when a year ago I wasn’t able to walk more than 2 aisles of the grocery store without risking PEM.  I hope that my reactivity will go down to the point where I’m able to live near an awesome city, but if that doesn’t happen, I still have no grudge to bear (although having a starbucks nearby is always in high demand).  Obviously this is not the mindset for everyone, but I’m beginning to think this exercise only makes sense when your bigger picture in trying it is about favorable tradeoffs & benefits outweighing the costs, rather than “having it all.”

About CityChanger

This blog is about my participation in a clinical trial for ampligen, an experimental immunomodulatory and antiviral drug, for ME (Myalgic Encephalomyelitis).

One response »

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