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The original was posted on /r/cfs by /u/socalledmoon on 2024-11-07 19:22:25+00:00.

My partner with very severe CFS, who is mostly bedbound (except for bathroom) just got back from a transcontinental flight.

Yes, I know, I’m equally surprised that someone with very severe CFS could do this at all. We had no option; they became very severe a few months in to visiting me on another continent and I have been taking care of them for 6 months. Eventually, their visa was expiring and they had to get home somehow. So we prepared as best we could, booked a full row in economy, got all the wheelchair assistance available and did a 13 hour flight home. From the car ride to the airport their heart rate was 130bpm and stayed above 100bpm for nearly the entire 20h trip, during most of which they could not fully lie flat.

What’s most surprising is that during the entire trip they have been better than normal–able to sit up for more than 10 minutes at a stretch, talk at a low volume, and light/sound sensitivity greatly reduced. Now that we’re home, they still seem slightly better although quite tired. Concerningly though, it seems like any activity is making them quite sick.

I’m worried that any exertion at this point might put them into PEM, a crash or even set their baseline back. What’s the best way of preventing a crash after we’ve already done most of the exertion, and at what point can we say they’re safe? Are crashes always sudden and after activity or can they set in slowly over time?