For an explanation of my rating system, and why it is skewed high, please see this prior post. Based on 43 weeks' worth of daily data, going back to September, here are my average percentages by day of the week:
Mon. 75.12
Tue. 75.54
Wed. 75.97
Thu. 76.85
Fri. 78.21
Sat. 77.92
Sun. 78.75
First, it should be noted that there isn't a huge variation in the averages. My worst day of the week, Monday, is only about 3.5 percentage points lower than my best day, Sunday. I rate myself in increments of 5%, so this is less than one full increment. A statistician might tell you that these differences are not "statistically significant."
But if I'm to draw a conclusion from this, I note there is a gradual rising pattern from Monday through Friday. My best days are typically Friday and Sunday, with Saturday not too far behind. There are a few possible explanations for this.
Mood Bias
I suspect that if you asked anyone who works a regular 9-5 job to track their daily mood, the pattern would be similar to what you see above. Weekends would be the highest, and Mondays would be the lowest. Although I've tried earnestly not to let mood affect my daily health rating, it's possible that I've let a little mood bias seep in.
Post Exertional Malaise (PEM) Effects
In terms of pure physical exertion, I expend more energy on weekends. As hard as I might try to relax, I can't seem to help it. Just walking from one room to another, and up and down the stairs in my house is more exertion than sitting in my desk chair at work. (Stress and mental energy, on the other hand, are higher on work days.)
Given that many PWME's cite a lag time of 24-48 hours between exertion and malaise, my weekly pattern might show that I crash from the weekend on Mondays and slowly heal throughout the week.
If, on the other hand, work was causing me to get worse, I would expect my weekday pattern to reflect a gradual descending pattern, where, as the week wears on, I slowly fade into poorer health. Instead I see the opposite - I get better as the week goes on.
I realize this theory runs counter to the prevailing thought in ME/CFS circles about the effect of work, but I'm just noting that, in my particular situation, it's one possible interpretation of the data. I'm not trying to say that work might be making me better, but rather, that it's possible I need to get better at relaxing and healing on the weekends.
Stress Effects
If on the other hand, stress is negatively affecting my ME/CFS, my lower weekday ratings might be a reflection of increased cortisol (a stress hormone) on work days. I don't normally think of my job as stressful per se, but every job comes with some stress I suppose. This interpretation assumes a more real-time cause & effect relationship, with no lag. But why would my health follow a gradual upward trend throughout the week? My stress, what little of it there is, remains pretty much constant throughout the week.
My Conclusions
If I had to guess which one of these interpretations is correct, I'd guess mood bias. I also want to note that processing the data in this way says nothing about the long term effect of working on ME/CFS recovery. It could be that working or not working has an effect on one's recovery which can't be measured by small weekly fluctuations.
Sorry to draw you along this far only to tell you...I don't know. Still searching for an answer on this issue.
I could totally see that work can be a quieter less stressful environment than home. I'm housebound and often have the most recovery during the week when I'm in the house by myself and can take rest breaks when I want. I often crash on Monday after a weekend filled with activities with hubs and I look forward to a couple of quiet days by myself to recover. I think it is part of my denial of my illness and also the desire to have some sort of a normal life with my family. I often do too much when I have family members around. It is really hard to find a balance between honoring the severity of the illness and participating in some sort of a family/social life.
ReplyDeleteBaffled, "denial of illness" is definitely something I can relate to. Sometimes I catch myself making plans mentally before I remember that I can no longer do the things I was planning to do.
DeleteBut more to your point, I agree that its very very difficult to remember to take it easy when family is involved. It's just so natural to participate in all the fun and revelry, we forget about the PEM that comes later.
This certainly rings true w/me as well.....pushing yourself at these events in order to still be seen as somewhat normal. I really dislike having to pass on important events, then it is like CFS is winning the battle for my livelihood. Like you Patrick, I look healthy and can work 75-80% of the time, so no one outside my inner circle knows my illness. Makes me feel different I guess, which I have had a hard time accepting. Making plans first and then thinking about the consequences is normal for some time....that is how our minds are programmed after being used to no limitations for all those years. Keep up the great work here, I think it is huge to have discussions like this to know what has helped people since there is an endless list of things to try!
DeleteBret, I can relate to pretty much everything you said, but this sentence stuck out for me:
Delete"I really dislike having to pass on important events, then it is like CFS is winning the battle for my livelihood."
I've had that exact same thought many times! Of course, if we push too hard, CFS is going to win the battle later. So it's just a question of when do you want CFS to win, now or later? Nice choices, right?
I suppose the issue at hand is not to see CFS as a foe per se, but to live alongside (deep thought here) it. It is part of us, like it or not. Accepting a limitation that is imposed on you versus one we sign up for (like doing something foolish and breaking a leg) is so hard for me. Thoughts go back to the "why did I not recover from the flu that kicked this off like millions of other do, but not me" attitude. I have come a long way in the almost 2 years with this in my life. But, the journey is far from over in regard to acceptance.
DeleteYeah, that acceptance thing is probably what I struggle with the most. Hopefully in another year or so I'll be closer to acceptance like you are. I already think I've come a long way since 7 or 8 months ago when I was diagnosed. At least now I don't obsess daily with how I can claw my way back to full health.
DeleteFunnily enough, I do sometimes view my CFS as something I signed up for, similar to your broken leg analogy. My doctor thinks I got CFS after contracting an enterovirus from dirty water that I surfed in. I knew that the beach that I surfed at had a health advisory in effect, but I went into the water anyway because the waves were good that day, and got sick 4 days later. But yeah, I still wonder, "why me." Plenty of other people surf there and don't get CFS, so there must be more to it than just bad timing.