Delayed Onset Post Exertional Malaise

The FibroTroll, as I’ve mentioned before, is a bit of an arsehole. He likes to beat you with his club at short notice and for minimal reason. The other thing he does, is hold a grudge. Like really, really, hold a grudge.

I’ve noticed a theme the last couple of weeks in a few of my Fibromyalgia and other chronic illness support groups that people will comment that they did something on Saturday, didn’t feel too terrible on Sunday and then on Monday feel like they’ve been run over by truck. Or work a few days, then have to sleep the entire weekend.

This happens to me too. The technical term for it is Delayed Onset Post Exertional Malaise. Basically what it means is that you’ve used up all your energy, but your body doesn’t realise it until 24-72 hours later. It is mostly described in relation to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), but it is common with FibroWarriors too.

It’s as if your car could run out of petrol but keep driving for another 10 km, but use up petrol that hasn’t been put in the tank yet. Then when the fuel light finally turns on, the car won’t run, and you have to replace that 10 km worth of fuel before the tank is even empty.

Possibly not the best analogy, but that’s the way I explain it best. (If it helps, pretend that car’s fuel tank is in some Dr Who’s parallel dimension!)

It makes it even more difficult to learn to pace yourself. For most people, (myself included before the FibroTroll came to stay) when you think about pacing, you think that all you need to do is stop when you get tired and rest. This doesn’t work. You have to work out how to stop BEFORE you are tired. Yep, you have to guess when that fuel warning light SHOULD go off, and ideally stop when there’s still fuel in the tank.

The other problem with Delayed Onset Post Exertional Malaise, is that if you do a thing (work, exercise, function, exam – basically anything that is physically, mentally or emotionally more draining than normal) and then might not feel too bad the next day. So you don’t rest as much as you should. Then the next day (or anywhere up to 72 hours post thing), that’s when it hits you. Except that because you didn’t rest the day after, it actually turns out that you went 20 kms into that negative fuel tank.

And this is where the FibroTroll’s grudge holding comes in. He’ll beat you with his pain club, his fatigue club and whatever other club he finds lying around, and often invite his friends over for a party.

My advise for this, is to ALWAYS schedule a rest day after a thing, if at all possible. I’ve done it for today, as I had a big physically challenging weekend. I gave myself permission to not get things done. No washing, no cleaning, absolutely nothing but the necessities. I kept my yoga routine down to the basics – pretty much just stretching. I have allowed myself to write this blog, as I am doing that in my HBO2 chamber and don’t have to move much to do it. But had the weekend been mentally challenging, then I would have curled up with a trashy novel or some simple crochet and tried not to even think. I’ve already given myself permission for tomorrow to be the same if I need it. Hopefully, that will be enough to avoid the crash.

If you want to read more on my thoughts about pacing, I’ve written quite a few posts about it. You can find them here, here, and here. I mention it a lot and I really do think it is one of the most important aspects of learning to manage the FibroTroll.

Do you get Delayed Onset Post Exertional Malaise? If so, I’d love to hear how you manage it – I can always use new tips!

Author: Sonja

One woman’s journey as she comes to terms with living with Fibromyalgia. Living with her knight in tarnished armour, with a small flock of chickens, and pair of Tawny Frogmouths and a homicidal Butcher Bird in the backyard.

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