I need to emphasise the point that there are several parallel components to the process, but one of them I think is exactly this. As I get old, and having quite a lot of worn out joints, I meet this all the time. The knowledge that I will get pain severe enough to stop me being able to put my next step in the right place prevents me from making the voluntary effort of trying. The implicit knowledge that I will simply fall and end up with a bleeding face is enough to prevent the effort. The process is both unconscious and conscious.
I get that, but I’m also mindful that it has seldom been a mistake to underestimate doctors’ ability to understand what is being said with regard to ME/CFS.
There is also another aspect which I think is important to try to convey…
Last year I spent a great deal of time with a family member who was dying of liver failure with what was eventually inferred to be hepatic encephalopathy. If you were drawing up a list of symptoms, or answering yes/no to a list of symptoms, we would probably have looked very similar – fatigue, brain fog, feeling generally unwell, immobility, sensitivity to noise, poor temperature regulation etc. But to anyone with experience of living with both of us the differences were also stark. In particular, his fatigue was quite different. He would feel tired after exertion but there was no evidence of PEM. Also the nature of the fatigue was very different – it made him feel sleepy and lethargic in a way that I almost never am. It also seemed to affect his motivation – he was a highly motivated person who got bored very easily. But his “lack of energy” seemed to demotivate him, as though he was sedated. That is very different to how I feel. My “lack of energy” has the opposite effect. And my perception is that that is the nature of my illness, not a reflection of my character or outlook.
At my worst, when I am “resting” I feel as though I am expending a huge amount of effort because of the intensity of the fatigue, discomfort and pain. It feels as though my body is simultaneously screaming for something it can’t get and also intoxicated by something it can’t get rid of.
An analogy I often use is that when I am “resting” I feel the sort of intensity of fatigue that a healthy person might experience while they were cycling up up a mountain at their limit. I often reach the point where I would have to stop cycling but I can’t because I’m not doing anything. Paradoxically, because doing nothing doesn’t feel like rest or recovery, and I am invariably very uncomfortable, it often requires more psychological effort to rest than to try to be active.
By contrast, my family member’s hepatic fatigue appeared to be more like the sort of exhaustion that one might experience
after cycling up mountain or running a marathon. Or the sort of lethargy people experience when they are very drunk. His body seemed to be saying “I’m too exhausted to get back on my bike” whereas by body is screaming “get me off this bike” when I’m doing nothing.
Having written all that, reading this thread reminds me again that my experience is not necessarily common to other people with ME/CFS. Sometime I read comments and think “that’s very like my symptoms” and other times I think “that is very different to me” – not unlike the differences I observed between me and my family member.
I don’t know that I’ve said anything very useful here, but I want to try to convey as much about my experience as I can in the hope that it may help in some way.
Thanks for thinking so hard about this. I wish there were more people with the requisite knowledge and intelligence spending as much time trying to figure it out – and listening to patients.
