Friday, March 10, 2017

Getting Ready to Move

A 30 day notice is given to the landlord and we are getting ready to move on. I'm now feeling rather apprehensive though. 3 months on the road could put a lot of strain  on my body and I may end up destroying whatever little chance I have for recovery. I'll have to be very careful. I'll rest every other day and keep the number of steps to under 6000. And I'll cut it short and return if there is any sign that I'm getting weaker, like the post-trip struggle I had after the trip to SoCal last year.

Between the new car and getting ready to move, I've been too distracted to write. My brain doesn't seem to function either since I stopped the regular walk schedule. It's just another reminder of the importance of daily walk and keeping a regular schedule for CFS patients.  And also a reminder that walkable city is better environment. Probably better for healthy people as well. Suburb is good only if you plan to raise children.

On other news, my fitbit has been dead for a few weeks. I've been wearing it in the shower because shower takes a lot of energy and had to be included in the measuring. The battery must've gotten shorted; it no longer holds charge. I got a replacement today. Luckily the price of Fitbit Charge HR has been cut in half now that new models are out.  I'll have to take it off when taking shower from now on. That means I'll have to manually account for the shower somehow.  I'll probably grep for 'shower' in the activity log and then insert the calories expenditure template for shower in the fitbit data. That means I'll have to record the time of shower as well in the activity log.

Sunday, January 29, 2017

Choices That We Make

It seems I now fully  recovered my pre-trip form. I'm not quite back to the shape I was in back in the summer, but  I did manage 8000 steps in a 3 hour jaunt yesterday. I went for a haircut in Sunset, stopped in Mission to buy some fruits and then carried 10 lbs of it  to an open house for rental.

The prices have been going up in leaps and bounds in SF. The cheap haircut that used be $12 is now $15. And drip coffee from Peet's is now over $2, and Philz went up from $3 to $3.50. The Muni fare went up to $2.50 as well. It must be the effect of the rising minimum wage. It is now $13 and scheduled to go up to $14 in 6 months on its way to $15 next year. No complaint though. People in SF can afford it and I'm all for living wage. Not that you can make living in SF with $15/hr wage, but the more the better.

Coming back from Sunset, I just missed the muni train. I was about to turn the corner when the car arrived. I jogged for about 20 meters thinking I might be able to catch it. When I came around the corner, I realized the stop was still another block away. If I was healthy, I could've continued to jog and caught it just fine. But I was risking getting sick for 4 days if I did that. So the choice was between that and waiting for 10 minutes for the next train. I obviously chose the latter. This is the kind of choices that we CFS patients face on daily basis.

Then I woke up this morning with this fantastic fatigue. I used to get the same kind of fatigue the day after I climbed the Mulberry tree in the front yard of my old house in San Jose to prune it. It used be an all day affair. I would cut the branches off with my chainsaw for 30 minutes or so, take a break for a while and repeat. Then haul the debris to the curb for the green waste crew to pick up the next morning. Now I get the same fatigue after just running errands. It is not a post-exertional sickness though. It is a post-exercise fatigue accompanied by happy feeling. I'll have some post-exercise funk tomorrow when the happy chemical dissipates and recover just fine.

Friday, January 13, 2017

Cross-Country Trip Plan

Now that I'm out of the prison that was the post-trip struggle, the desire for the cross-country trip is stirring again. This plan was conceived based on the observation that when I move to a new place I tend to walk further without getting sick. So why not move around and see what happens? The plan also got to do with the fact I'm fairly useless since I'm not working, so I may as well make a good use of my down years and travel around.

That was why I moved to Seoul for a few years.  I not only got to see the country that I haven't seen in decades, I also found an eminently walkable city. SF was swell, but I walked all over it and I was in need for new, exciting routes by then.  Moving was a breath of fresh air and I was practically in a disneyland.

The trip across the US won't be the same. For one, it is of a vastly larger scale. I won't be able to make much of the trip since I'll have to limit my walking to 1 mile per day. No way I can fully see national parks with that. But it will be exciting enough nonetheless and that may prove to be enough.

The thanksgiving trip to Socal has put a damper on the plan, however. If I  have to pay with 6 weeks of struggle for a week of romping, it just won't be worth it. I'll have to strictly stick to the limit and do not walk more than a mile a day and give a full rest every 2 days.  And we'll have to stay put in one place longer. Beyond that, I'll have to play by the ear listening to my body very carefully.

Tesla opened up its flagship store last summer just a few blocks from my apartment. I was already on the waiting list for the Model 3, so I figured I'll pay them a visit and test-drive their current model. I liked it so much I switched it to Model S. More expensive, but it has a lot more utility.

It is a perfect car for a CFS patient. It must stop every couple hours and recharge for 30 minute or so. CFS patients need to stop and rest after every 2 hours of driving anyway so it is a perfect match. That should be enough to recharge me and I should be able to drive for extended period without stressing. Model S can actually fit a twin size mattress in the back with the backseat folded down. I could climb back and take a nap. Its Autopilot feature could relieve the stress of driving too, though it may kill if I become too complacent.

So my next plan is to travel around the country in a Tesla this summer. I'll check out of this horribly expensive city for a few months and the saved rent alone will finance the trip. The fuel cost will be zero since the use of  Tesla chargers is included in the car's price, so the cost will be only lodging and food. If you don't count the price of the car, that is.

That is all 6 months way, anyhow. For now, I am going to try to replicate whatever I was doing before the improvement appeared back in June. They are:
  • No Internet, commute to Peet's for the connection
  • Strict brown rice diet
  • Isometric exercises
  • Sudafed, twice a week
I went through my log again, and I noticed that I switched isometric exercises from pushups. I figured that would lessen the muscular microtear and therefore possibly lessen the post-exertional sickness.  I didn't feel any difference so I went back to regular pushups soon after the improvement appeared. I don't know if that was the reason for the improvement, of course, but I'll add it back to the mix and see what happens.

Chances are all these are no more than coincidences. And if you put them to the test, they are likely to not work for you, just like none of the methods reported by other patients worked for me.

Saturday, January 7, 2017

Post-Trip Struggle vs. Post-Exertional Sickness

And just like that, the post-trip struggle appears to be over. I spent 3 hours grocery hopping (yes, shopping hopping) 2 days ago, with over a mile of walking in total, and I didn't get sick.  In fact I've been feeling pretty good. Under the circumstance, that is. It's been 6 weeks in the post-trip jail in all.

It is the same amount of time, by the way, that I used to spend wallowing in over-training syndromes when I was training for Judo competitions. I used to kneel over for 6 weeks at a time when I over-train. Coincidence? perhaps. Or maybe the post-trip struggle is equivalent to the overtraining syndrome. The struggle after the trip to Korean eastern and southern seaboard in 2011 was also about the same length.

This post-trip struggle is also remarkably similar to the struggle I had after the flu shot in 2015. The flu shot is known to cause low grade inflammation, so I surmised that the inflammation lasted for 2 weeks. But the paper on the effect of flu vaccine on inflammation marker found no sign of elevated inflammation on day 7. So the 2 week struggle after the flu shot is not fully explained by the inflammation. If not the inflammation, then it must be the sensitivity to inflammation that went up.

Is the post-exertional sickness also the increased sensitivity? It lasts 2 to 5 days, with most of them 3-4 days. And it coincides with DOMS and lymphocyte activation . The lymphocyte activation, like DOMS, could be the response to the muscle fiber damage. Since muscle fiber damage causes inflammation, the post-exertional sickness is likely caused by the inflammation rather than the increased sensitivity to inflammation.

The accumulation could be likewise. Since the response to an exercise can last for 4 days, it is not unreasonable to assume that the damages from exercise accumulate over that 4 day window. And if the accumulation goes over the threshold, the post-exertional sickness sets in.

In summary, a prolonged period of activities raises the sensitivity to inflammation and therefore you become more likely to get sick. The accumulation crash, on the other hand, is caused by the accumulated damage from the activities. It is the inflammation, not the inflammation sensitivity.

Finally, the post-exertional sickness itself is the sickness behavior triggered by the inflammation in CFS patients who are inflammation-sensitive.

At least, that is my theory.

Wednesday, January 4, 2017

Theory For Post-Trip Struggle

Now it's been almost 6 weeks and I'm still struggling. I can only manage a mile every other day. And I'm back to logging ADL (activities of daily living) because they have effect my condition next day. I'm not a happy camper.

There are two possible explanations for this post-trip struggle: 1) it's taking a long time to recover from the damage caused by the trip; 2) the body has recovered, but the sensitivity to exertions/inflammation went up because of the trauma caused by the trip.

Repairing the damage from exercise should not last more than a few days. Delayed onset of muscular soreness only lasts 3 to 5 days and so does the immune response to an exercise. So, the prolonged inflammation, if it exits, must be from the accumulation of oxidative stress.

Searching for oxidative stress and prolonged inflammation turned up a paper on oxidation-inflammation theory on aging. It states that chronic oxidative-inflammatory stress prevents adequate homeostasis and therefore the health. (I always thought that CFS is strikingly similar to aging, and this paper fits in with that). But it does not state that accumulated oxidation damage causes prolonged inflammation. It only mentions the homeostatic deterioration caused by oxidative-inflammatory stress as the cause of aging, which probably only means oxidative stress and inflammation happens together. I couldn't find any paper that says accumulated oxidation damage causes prolonged inflammation after the stress is over.

So, on to the second possibility.  If the inflammatory response to the damage from an exercise should not last more than a few days, the post-trip struggle cannot be caused by the damage, or accumulation of it. Instead, the prolonged stress must have raised the sensitivity to inflammation. If you are more sensitive exertion and ensuing inflammation, you are more likely to get post-exertional sickness. And the oxidation-inflammation paper works better with this theory: the stress caused the homeostatic thermostat to become more sensitive.

One may think that it does not matter weather it is the inflammation itself or the sensitivity to inflammation. The end result is the same: you are weaker and you are more likely to get the post-exertional sickness. But you can always recover from the inflammation with rest. The increased sensitivity, however, is a fundamental worsening of CFS and there is a possibility that you may not recover. It is a re-injury. Post-exertional sickness that lasts a few days, on the other hand, probably doesn't make CFS worse fundamentally. It is a terrible nuisance that robs the quality of life, however.

The lesson is that prolonged or traumatic activities can worsen your CFS fundamentally and therefore should be avoided at all  cost. But I already knew that, of course. I have plenty of experience. Back in 2008 when I felt better, I went on a biking trip only to seriously worsen my condition for a year. Then, I climbed up the Telegraph Hill in 2009 while self-practicing the Graded Exercise Therapy. My condition get seriously  worsened again till 2011. It's  been very, very slow improvement since then.

I went on this trip knowing the danger because the last trip went well. Two and a half years ago, we stopped in Philippines for 5 days on the way back from Korea and did some snorkeling. Unfortunately, I don't have any objective data to compare because I only started wearingg Fitbit since 2015. Looking back though, it probably was easier trip. It consisted mostly sitting on the planes and buses. The little activities that I've done was basically floating on the water. And it included one full day of rest doing absolutely nothing in the hotel.

And this is the danger of going by the memory and subjective feeling. You managed 7,000 mile trip, so you think you could manage 1,000 mile trip.  But I probably walked much more this time. And that was beside all that driving.  I'll have to limit my next trips to 5 days at a time, with a full day rest every two days, and no more than 6000 steps of walking each day.

Thursday, December 22, 2016

Post-Trip Struggle

It's been over three weeks since I returned from the week-long trip to Socal and I am still struggling and yet to return to the pre-trip condition. Here is the graph of the 7 day rolling sum of steps taken before, during and after the trip:

The number of steps after the trip is substantially below the numbers before the trip. To make it worse, I've been more susceptible to post-exertional sickness: I got sick twice since I returned from the trip. They were both triggered by activities tolerated before the trip:

This is similar to the condition I was in prior to the improvement in June. So, basically I gave up most of the improvement which has been fading and then reappearing periodically since. This certainly makes me rethink about the upcoming cross-country trip that I've been planning. If I don't give it up, I will certainly will have to moderate it more than I was planning.

On the next post,  I'll compare this post-trip struggle with the previous ones and talk about the theories for the post-trip struggle.

Sunday, December 18, 2016

Thanksgiving Week Trip

Thanksgiving was a good excuse for a test run for the upcoming cross-country trip that I've been planning. We rented a Ford Fusion Hybrid from Getaround for a week and went down to socal. It was a 1000+ mile trip spanning LA and San Diego on I5 and then US101/CA1. Yeah, I paid price for this trip and struggled when I came back. More on it later.

Day 1 - Drive all day to San Diego (7000 Steps)
It was not a good start. The trip planning was rather stressful and I fatigued out despite the preemptive rest of 2 days. I had to frequently  pull over, crawl to the backseat and lie down with my legs sticking out the window for 15 minutes at a time. How I wished the car would drive itself. You know how just  holding the steering wheel can be a struggle if you are a CFS patient. When we got to Fresno, I emailed Tesla to add the autopilot option on my order of Tesla S. An $8000 option, but it will be well worth, especially for CFS patients, if it does what it promises to do.

To make things worse, I did not account for the traffic in LA. By the time we got there it was a rush hour and the freeways were all clogged up. After 30 minutes of futile attempt, I gave up and headed to my sister's house in LA instead. We had dinner, stayed there till 8PM and then restarted to San Diego. It was past 10 PM when we got to the hotel in San Diego. Strangely, I was in a better shape than when we left San Francisco. We walked a few blocks around the Gaslamp Quarter and then went to bed.

Day 2 - San Diego (9000 Steps)
Coronado, Midway, Little Italy, Cabrillo, Mission Bay. It was a whirlwind the next day. I wasn't sick despite the ordeal the previous day. That's probably because I did not walk much; sitting up or driving is not as fatal as walking. I was pretty tired by the time we got to Cabrillo vista point though. I lied down on a bench for 15 minutes. But I felt better as the day wore on. The traffic was a mess however. It took us over 5 hours to travel 130 miles. The plan was to get to my sister's for dinner, but the traffic was so bad we had to pull over about 30 miles from LA and had a fast food dinner instead.  At the end, I not only survived 3+ hours of nonstop driving, but I still had energy left. It could've been the effect of Sudafed that I swallowed in the morning. On top of the excitement effect.

Wife commented how different people in San Diego was from San Franciscans. She thought they were more portly and less fashionable. In other words, more American. It is a military town and has number of sailors and retirees.

Day 3 - Rest in LA (7000 Steps)
I pooped out the next day. Not sick, just wiped out, despite logging 9000 steps the previous day. It wasn't a sustained walk though, so its effect must've been moderated. It was a low intensity activities spread out throughout the day, much like running errands on public transportation. My sister and her husband drove us to Griffith Observatory in the afternoon and that is all we did during the day. Then family get-together and dinner with another sister's family.

Day 4 - Hollywood and Beverly Hills (10000 Steps)
This standard affair for first-time visitors of LA was for my wife. I was in a decent shape after a day of rest.

Day 5 - LA downtown and Santa Monica (12000 Steps)
Day 4 was for me. I haven't explored LA historic sites and wanted to check out the new Expo line to Santa Monica. I've turned into a public transportation freak since I got rid of my car 6 years ago.

The Expo line was a flop. There was nothing to see; it was 50 minutes of boring scenery. Coming from SF, Santa Monica wasn't anything to write home about either. It's a cross  between Santa Cruz and Ocean Beach, only with a lot more people. We should've spent the time on LA Dart buses exploring LA downtown more.

If you are visiting LA, go to the information center in Paseo De La Plaza, pick up the Dart bus map. You can explore a lot more that way and also avoid getting ticketed for parking in LA downtown.

Day 6 - Drive to Carmel (8000 Steps)

We left for Carmel around 9AM. We drove on US 101 this time, stopping at various vista points for views and picture taking. Then we had to stop in San Luis Obispo for lunch and bathroom. We got to Hearst Castle after 2PM. There were too many people and we didn't feel like spending $50 to see the gaudy place. So we headed straight to Carmel after another bathroom break.

It must be the elephant seal mating season. There were about a million of them lounging on the cold and rainy beach or fighting each other in the water. None seems to have CFS. I suppose the sick ones died off. I sometimes imagine what would've happened if I weren't financially  independent. I probably would have moved in with one of my siblings, or died on the streets.

We got to Carmel after dark. I negotiated $50 off at the Comfort Inn and then crashed on bed for a while before going out for a dinner at La Bicicletta.

Day 7 - Point Lobos, Carmel, Monterey, Santa Clara, Home (8000 Steps)

After the breakfast at the inn, we took a stroll at the Carmel Beach. Wife did some shopping and we came back to the inn and rested for a while. Then we checked out and went back south to Point Lobos.

This was where I used to come for hiking. The last time was actually while I was sick with a bout of Over Training Syndrome in 2008 -- I had a visitor and had to take them on a sightseeing tour. I got sick in April that year. Then I recovered for a few weeks and before permanently relapsing in July.

After Point Lobo was Monterey and Pacific Grove. The last time there was in September 2007. I organized a bike ride for Stanford Outing Club from Monterey to Point Lobos through the 17 Mile Drive and then back. It must've been about 30 miles of ride. I remember a long stretch of uphill around Carmel. I struggled on it on my old rickety bike, I even wrote a poem about it.

Anyway, it was a trip down the memory lane. And it made me double my resolve  to hike and bike one more time before I go home  (in the sky) for good. (Yeah I know, setting a goal is about the worst thing you can do if you are a CFS patient)

All in all, it was the longest trip I've taken since I got sick with CFS. Probably the most active trip too, with almost 60k steps over a week. On the next post, I'll report the post-trip struggle and comparison with previous trips to draw some some conclusions about my progress with CFS.