Livets bilder blog post, by Swedish blogger, 29 October 2016: Fear and avoidance or a desire for participation?

A cardinal symptom of ME/CFS is Post-Exertional Malaise (PEM):

“There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period – usually 24 hours or longer.”

When I talk about cardinal symptoms I mean the main symptoms that must be met for the diagnosis to be set.

For me PEM is something that has been around several years before I got my stressrelated fatigue diagnosis. It has followed the same pattern for nearly a decade although my activity level had varied a lot. From the time where I was working full time but with very limited leisure until now when I am basically home-bound and forced to spend most of my time in my bed or sofa.

Although the clear and recurrent pattern, this is the thing – combined with my extremely limited range of activity – that people in general and health care in particular has had very difficult to understand and accept.

It is clear that most people can understand what it is to feel discomfort in the moment – due to sound, lighting, uncomfortable seating and so on – but they don’t seem to understand the extreme consequences that can appear afterwards. As healthy you can struggle through that “short” moment of discomfort and then it’s okay. I can also put up with the discomfort in the moment, mostly. But my problems does not end when the moment is over. It may even worsen for several days afterwards and then be present for a long time.

So “temporary discomfort” – due to physical, mental or emotional stress – can create an overload and a deterioration due to exertion – that can be long-lasting. But a vigorous exertion in an individual with ME/CFS is also is a risk of a permanent impairment.

If I want to avoid what you see as temporary discomfort, it’s not that I find it difficult to persevere. On the contrary I am often too stubborn to bite the bullet for my own good. No, it’s all about that I know what to expect afterwards, and which the long-term consequences might be.

What seems like a short-term discomfort for a healthy individual thus have far-reaching consequences in my everyday life. This means not only an increase in discomfort and other symptoms, but also that my range of activity shrinks and my already slow pace becomes even slower. It is thus to be even more limited in my daily life I want to avoid.

I do not want to overexert because I want to proceed with what I know I am capable of. To be active even if it is on a low level. To minimize the risk that an already very limited life becomes even more limited. It’s all maintenance, and not at all about fear or avoidance.

When I avoid things, it’s not about fear of increased discomfort in the moment. Nor of post-exertional malaise. No, it is in respect of my body’s limits and a part of a deliberate strategy – that I should be able to continue to be a part of my everyday life.

For me examples of triggers can be fluorescent lighting, waiting while seated, noise etc.

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