Saturday, October 31, 2020

Rejected for COVID-19 Vaccine Trial

I was too cavalier  in retrospect. NYC real estate market is in a COVID-induced coma and I wanted to fly out to check out properties. But the coronavirus is still in the air and it would be irresponsible to fly even if I'm not too worried about it. Getting vaccinated would make it a little easier for me to travel without guilt or worry, so I signed up for the Pfizer vaccine trial. 

Getting knocked out for 5 days by flu vaccine was a fresh reminder of the danger of vaccination for CFS patients. The vaccine doesn't get cleared out of your body in a day or two like some toxin; it stays in your bloodstream for days or weeks irritating your immune system to coax antibodies out of it. And people sensitive to inflammation may suffer while that is going on. There is no guarantee that the vaccine wouldn't permanently worsen your CFS either. Many COVID patients, after all, are living with CFS-like problems long after they become virus-free.

Luckily, I was rejected for the trial. The trial has to follow the patients for side effects and people with certain existing conditions obviously are not good candidates. CFS with its flu-like symptoms after an exertion poses particular problem because, if you get knocked out, they wouldn't know if it was because of the vaccine or CFS. And that's beside the fact that CFS patients may be more sensitive to the vaccine and therefore suffer side effects that normal people wouldn't.

 

Wednesday, October 28, 2020

Downed by Flu Shot, Again

What a bummer. I got knocked out again after 3 weeks of normalcy. This time by the flu shot.

I stopped taking the flu shot after I was knocked out by it for 2 weeks in 2015. Then I got sick with flu twice in 2017-2018 season, so I resumed getting the shot. And I didn't get knocked out by the shot for the last two years. I have no idea why I got knocked out again this year. Maybe the shot is different from year to year in its potency to foment low grade inflammation. Maybe I was weakened this year from no traveling and less activity. It could be a million things. 

The thing is that I didn't really need the shot this year. People are social-distancing for coronavirus, that the flu will be suppressed as well and the "twindemic" that the medical community is worried about is not  likely to materialize. But I figure I'd be a good citizen and get the shot anyway. It just didn't occur to me that I'd get knocked out again.

The upshot was that I was reduced to not being unable to take care of the cat in the morning. And I found myself swearing obscenities in the grocery parking lot for having to go back to the car  because I forgot the mask. Bad ol' days were here again. Naproxen has brought some relief a few hours at a time though, and I've been able to sit up. I didn't try NSAID when I was knocked out in 2015, so I can't tell whether or not NSAID now works because my CFS has improved.

Thankfully, it was over after 5 days. I was afraid it would stretch out for 2 weeks like in 2015. I went to 2 km walk yesterday and I'm recuperating comfortably with the aid of Naproxen and a half caplet of Bronkaid.  Back to the regularly scheduled programing of walking, working and doing house chores in 3-day cycle, I guess.

Tuesday, October 6, 2020

Inactivity Shrinks Exercise Tolerance

I've been saying that you can't exercise your way out of CFS. Now I can add to that: you can't unexercise your way out of CFS, either.

It's been a terrible year. I suffered the longest PEM after skiing too much back in January. I got out of it in May, but I continued to struggle. Throughout the summer I was unable to walk 2 km or bike 5 km without getting sick the next day. I could've gotten out of the slump by traveling, but the coronavirus arrived and travelling was out of the question. So the struggle went on. 

As if coronavirus wasn't enough, a Pacific storm, or what's left of it, set the West ablaze. The rain dried up before reaching the ground and only the lightnings touched down to ignite the tinder. The air became thick with smoke and ashes darkened the sky. The Spare the Air alert went on and on and we were house-arrested for several weeks. Occasional walk around the block was all I could muster without risking my pulmonary health. It has been worse than the year of fire.

This was a natural experiment, if there ever was one. I always wondered whether my penchant to get out of the house and walk has made my condition better or worse. I do know that it make me more prone to PEM crashes and there is nothing good about PEM crashes. You not only get sick, your exercise tolerance also stays shrunken for a while even after you recover from PEM sickness, so that you continue struggle. But I don't know if the frequent PEM has interfered with my long term recovery or not. Conversely, I don't know either if avoiding PEM by cutting back on exercise would've sped up the recovery. And this was an opportunity to experiment with a prolonged inactivity.

Less walking did reduce the frequency of PEM. Prior to 8/16, I was crashing on weekly basis. After 9/14, again frequent crashes for a few weeks. For a month between the two however, there was only one crash caused by back-to-back 2x5 pushups/dips. I figured, since I wasn't walking, I'd make it up with strength exercises and that appeared backfired. Otherwise I would've registered no crash during that time.

Not walking or biking also let me sit up more and lie down less. When I'm walking regularly, I spend inordinate amount of time lying down even when I'm not sick with PEM. Now that I suffered less from the ambient fatigue, I was scrubbing the bathroom and mopping the floor more often.  The house works brought the sense of accomplishment and satisfaction to go with it as well. 

Fewer PEMS and less fatigue. What's not to like? The immediate downside was that I didn't get to sleep well and my mood and motivation suffered. That I stopped writing during this period is a proof. My body becomes useless while I'm is recovering the day after from the walk, but my brain usually works better because I'm flush with happy chemicals from exercise. That ability was now gone. So, though the inactivity did help to reduce the fatigue and sickness, I paid for it with worse sleep and mood. In other words, the inactivity flattened both the (dopamine) highs and (PEM) lows. It was rather a dull, zombie-like existence.

But more worrisome than that was the shrunken exercise ability. When I resumed walking, I couldn't walk 1km without getting sick. Short bouts of scrubbing the bathroom or mopping the kitchen floor apparently didn't do much to maintain my walking ability. 

Which naturally brings us to the question: if inactivity shrinks the PEM threshold, shouldn't regular exercise raise it? Well, I already know that regular walking does not improve the exercise tolerance in any discernable way. My walking distance/speed when not travelling has stayed pretty much constant at 2 km and 90 steps/min. So, answer probably is that inactivity will shrink your exercise tolerance, but regular exercise will only bring it up to a certain plateau rather than continue to improve to restore your health.  Therefore, my old policy still stands: walk to improve the sleep and mood rather than to recover from CFS. 


Social Distancing in Dolores Park

The air finally cleared up late in September. I woke up and struggled on 9/30, but we jumped in the car and went to SF as planned. I already rolled Gimbap the night before and wasn't about to let that effort go to waste.  And it was a familiar story: by the time we got to the Tesla station in Fairfield, the struggle ended and I was as good as I could be. We bought a month supply of coffee in Castro, checked out an apartment (SF rent cratered 30%, thanks to coronavirus, and I'm thinking moving back to SF), and walked all over the city all day long. I ended up logged 4 miles. I spent the next day and a half happily recovering from the trip, but I didn't get sick.  

So, I'm back to the normality of walking 2km or biking 5, with occasional trips to SF for 4 mile walk. Except now I'm in 3 day cycle instead of bi-daily one: 1) 15mg Walfed + Naproxyn + walk or bike, 2) do mental work while recovering, and then 3) do housework. The 3 day cycle seems to reduce fatigue and I get the housework done on regular basis. It's a sort of compromise between inactivity and activity, hopefully for the best of the both world: less fatigue, good sleep/mood and keep the house clean as bonus. I'll be on that cycle throughout the rest of the year and see how it goes.