I was up for several hours last night with gut problems so I’m a little out of sorts today.

This got me thinking about how much I’ve been able to work in the last while. I made this chart showing the number of hours I’ve been able to work on average on weekdays when I’m not sick. The number has dropped a lot since I was an undergrad.

Back then, I would often start work at 10 am — after having breakfast and exercising(!) — work until 5 pm or so, cook dinner, and then work again from 7 to 9 pm. That’s about 8.5 hours a day, assuming half an hour for lunch. Sometimes I did other stuff, too, so let’s say I worked 8 hours on average per day.

There were a few years of complete instability pre-diagnosis when I was very ill, and then when I was on varying doses of steroids for a few years. Once I was steadily on Remicade, though, I could still work in archives from 9 to 5 every weekday, with around an hour off for lunch. That’s a 7-hour work day.

When I was working in industry, after I came back from an overwork-induced sick leave, I worked 6 hour days. That schedule was OK for a few years.

During my postdoc, I definitely worked less than that. More than 5 hours a day would wipe me out. I probably averaged around 3.5 or 4 hours per day of work.

These days, one of my jobs has a cap of 14 hours a week. I often can’t even work that many hours before I have to lie down for a while. That’s an average of less than 3 hours per work day! Some days, of course, I feel fine and can do a lot of work. 3 hours of work in a row is a decent day, though, and 5 is a big deal.

Maximum number of consistent hours of work per day (1999-2016)

Maximum number of consistent hours of work per day (1999-2016)

Fatigue and Remicade

I’ve also included the frequencies of my Remicade treatments in this chart. My dose per kg has stayed the same for the entire time started at 5 mg/kg and was raised to 7 mg/kg in 2010 . The increased frequency of Remicade treatments is correlated with an increase in Crohn’s problems. In fact, the change from Remicade every 7 weeks to Remicade every 6 weeks took 2 years to get approved.

So is there a correlation between Remicade dose and/or frequency and levels of fatigue? Well — the scientific literature is not clear about it.

There are not many long-term studies of people with Crohn’s on biologics. A lot of studies say they’re long-term, but then they turn out to be for only a year or so!

My gastroenterologist has told me that gastroenterologists are aware that patients who have been on biologics for years tend to get more and more fatigued. It’s not clear, though, whether the fatigue comes from the disease, the treatment, or some combination of the two. But at least now, doctors are recognizing that fatigue is a serious and pervasive symptom in Crohn’s and that more should be done to study it, especially because doctors are really not sure what to do about it. (For instance, Cochrane Reviews has released a protocol for studying interventions for fatigue in Crohn’s, but the actual study has not been done yet).

In the meantime, I’m hoping that the curve in the chart above will level off. I don’t want to stop working, I don’t want to stop living, and fighting fatigue is, well, tiring. This vicious circle is the worst!

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