Trying to cope with life when you have any form of extreme fatigue is tough, whether it be due to ME/CFS, long covid, post-viral, fibromyalgia etc. There are so many frustrating and challenging things to have to get your head around, such as:
no-one *really* understanding what extreme fatigue feels like (I used to get so frustrated when healthy people would say to me: “Oh I get tired too”)
the fact that no medical professional can give you the answers you so badly want
so many confusing statistics as to when or if you’ll ever get back to full health again
the cruelty of delayed-onset fatigue, where you don’t know you’ve overdone it until hours, sometimes days, afterwards.
Well, I’m sorry to do this but I’m going to add another thing to the list:
Cumulative Onset Fatigue.
This is a term I’ve coined myself, so you won’t see it mentioned anywhere else (as far as I know). And I apologise for giving you yet another potential pitfall to look out for. But being aware of it could make a big difference to the smooth sailing of your fatigue rescue plan, so I wanted to share it with you all.
So what do I mean by ‘cumulative onset fatigue’?
Well, I mentioned delayed onset fatigue earlier, as it’s often one of the signature symptoms of extreme fatigue. Indeed, it’s one of the things your medical professional will have looked out for prior to giving you a formal diagnosis of a fatigue-related condition. In the absence of any conclusive test for these conditions, it’s symptoms such as this that help our medical experts pinpoint and confirm such diagnoses as PVF and ME/CFS.
This means that most of you are probably already familiar with the concept of delayed onset fatigue. But for those who aren’t, it’s a situation where our bodies often don’t tell us at the time that we’ve pushed things too far energy-wise, instead it can be hours or days before we feel the effects in the form of a flare-up of symptoms, or crash. It’s one of the more frustrating things to have to get your head around when you’re first learning how to cope with extreme fatigue. The signature pattern is to experience the after-effects 48 hours after overdoing it, but I’ve seen a fair amount of variety in this.
As a Fatigue Coach who’s helped many people, I’ve gathered a unique view of the different ways extreme fatigue can present itself. As I often say, everyone’s journey is different - and I can honestly say that out of the scores and scores of people that I’ve helped, no two have been the same. But this does give me a breadth of view, and the ability to spot interesting trends and commonalities when they DO appear. And that’s where the topic of this blog comes in.
A while ago I spotted what I thought was an interesting pattern in many of the people I was helping. Many appeared to be telling me that they hadn’t overdone it hugely on any particular day, but that they’d suffered a flare-up/crash for ‘no apparent reason’. By asking them to share details about the days leading up to that crash, it became clear that many seemed to be ending up with a sort of ‘energy debt’ at the end of most days. They hadn’t massively overdone things, but they had in hindsight gone over their baseline. And because they hadn’t suffered any obvious negative repercussions as a result, this made them more likely to overdo it the next day too. And the next. Until all of those ‘energy debts’ built up - and led to a flare-up or crash.
I suspected that rather than these bad days being for ‘no apparent reason’ they were perhaps due to this build-up of several days’ worth of slightly overdoing it. With this in mind, I started to introduce this as a theory to a selection of clients, and it seemed to really resonate. As a result, they became more aware of the importance of not consistently ending their days with an energy debt. And although this wasn’t a formal study activity, I can confirm that those who took this guidance seriously and became more focussed on sticking to their baseline consistently, started to report fewer bad days that seemingly came from nowhere.
Although this theory is largely based on my observational work, I’ve seen enough instances of it to decide that it’s worth sharing with you all. It might just help you avoid some of those bad days and find the discipline to stay within your current energy levels. And if you do find yourself succumbing to cumulative onset fatigue, take the learning from that and use it to steer you along a more helpful path next time. We can’t all have perfect days, but try not to turn it into a pattern!
I’d love to hear your thoughts on this, and whether you think you’ve experienced this type of cumulative build up.
I wish you continued success on your fatigue rescue journeys - you know where I am if you’d like my help.
Take care
Pamela
Comments