Aversion to activity - distinct from fatigue or not?

A symptom that is important for me, but is hardly ever mentioned, is aversion to activity.

It is something that develops as I become more exhausted from doing that activity and continue despite it. At some point I notice that an intense dislike of the activity is slowly growing, even if not long before, I liked it and was motivated. I often continue for a while despite this out of sheer frustration of wanting to get things done (and not quitting or failing as often as I do). After getting proper rest (may take several days), the aversion disappears.

 

I get fatigue and other symptoms quite quickly and sometimes suddenly, and feel an aversion to doing the activity that will trigger those immediate symptoms, I don't see it as an aversion to the activity itself but to the resting experience. I feel that aversion even if not in a crash or PEM, even if I am 'symptom free' at that moment.

An aversion would suggest a predictive and avoidance behaviour rather than a result/symptom I think? I expect somebody else can phrase that more carefully.

 

That's a better framing, even if it is semantics. But honestly I never looked at it as aversion to activity. It always made sense that it was aversion to what happens after activity. Activity's something I want to do--we all, or mostly all, want to, I would think. The aversion is to the inevitable aftereffects, which leads to, again, semantics, not necessarily aversion to activity, but prioritization of exactly what activity is possible, what activity is necessary, and what activity is worth engaging in considering the inevitable aftereffects.

 

I may be misunderstanding but it seems a very normal reaction to me, or at least a normal reaction for someone with ME.

 

I'm not doubting that it is normal in the circumstances. It seemed an interesting observation and I wanted to know if other people were experiencing this or not.

I'm not sure if aversion is the best term (English is a second language for me). At some point the activity begins being perceived as source of pain and a dislike for it grows (a bit like hearing nails on a chalkboard), even if it was enjoyed and liked earlier on the same day. I don't think healthy people often experience such a large difference in how they feel with respect to doing an activity.

 

My experience chimes with @Trish
I think we need to be careful about calling it aversion, because the BPs theory is all about us feeling avoidant towards activity. And while feeling avoidant to it would be understandable given the consequences in the following days, i have never felt avoidant of most PEM causing activities.
Rather like the OP & others have said, we can be looking forward to doing something, keen to do it & really enjoying it, & then as we start to feel very ill, all the joy goes out of it & everything in us, body & mind alike, starts screaming at us to stop.

thats normal & appropriate. of course healthy people dont experience it as an everyday thing, because they dont have the intensity of symptoms that come as a result of any activity being over-done. But i dont think it's anything remarkable... i mean if a healthy person were to be enjoying a walk & fell broke their leg, while they may feel they want to carry on for a short while, a few attempts with excruciating pain as the result will soon provoke serious aversion for continuing.

I think that seeing that response in PwME as something odd or unusual is a BPS construct based on their not understanding or believing the severity of PEM.... Aversion should not naturally accompany 'feeling tired or achy after increased activity' & therefore they see it as evidence of psychopathology that needs addressing. But thats only because they are utterly obtuse to the fact of the impact of true PEM which is not 'feeling tired/achy after activity'!!

 

It's about avoidance due to the (in their mind, incorrect) fear a relapse could occur, not stopping an activity because it's somewhere between unpleasant like hearing nails on a chalkboard and torture. If they want to advocate for patients to engage in self harm, they're free to do so and it will speed up the demise of their absurd ideology.

 

This observation doesn't prove BPS ideas right, it proves them wrong. I didn't learn to feel bad about an activity in the past, with the feeling inappropriately persisting and keeping me from doing things, and therefore causing an impairment in ability to carry out activities.

It shows that I do activities despite knowing they could or will be unpleasant (because I actually feel good about doing the activity initially), and keep doing the activity until the point where it's just too much to bear. And the negative feelings about it disappear quickly anyway with rest (within hours or days). In the BPS view these feelings would have to persist for years and decades in order to cause long term disability, like a kind of traumatic experience that we can't leave behind. Nothing of the sort is happening here.

This feeling is more like a kind of pain. It shows that activity gradually increases this kind of pain. This is one of the causes of impairment.

 

I think aversion is a term you need to be very careful with. It is correct in layperson's terms, however has specific meaning in psychological literature - both in conditioning and in aversion therapy. e.g. there are certain medications someone trying to kick alcohol might be given that means they will not get the normal reaction if they were to drink alcohol and it might make them sick etc. or the classic electric shock to programme an animal or human not to engage in whatever behaviour.

The 2007 guidelines suggested 'fear of exercise' and certainly Chalder has suggested that the collapse during exercise could be a 'behavioural response' (probably learned). Of course she is conveniently disappearing the mediating 'effect' being illness, just like animals learn red berries might be treated with caution from having been poorly (or witnessing companions dying from them), and in your example it makes utter sense because continuing to do whatever despite it making you ill (not just feel that way or feel ill - which is their disappearance strategy) makes you more and more unwell - and would be like continuing to eat the rest of the tub of ice cream past the point it has made you physically sick, or carrying on listening to the super-loud heavy metal even though it has already brought on a migraine. ie logical and probably there for a reason

 

yes i know, i agree, my point was that you need to be careful when you call it 'aversion'. Thats not an optimal term because it is oft used by BPS/Psychologists to mean something different to what you mean by it.

 

Can you give us a specific example of when and how it occurs please @strategist (just so I can understand you properly).

If too tired or stressed or anything feel free to ignore this.

 

@Trish, you have described what goes on for me. I repeat many activities that I must do, or that I enjoy doing despite previous pain and increasing feelings of being unwell while doing the activity.

Pacing of course helps when the muscle pain, lightheadedness, weakness etc.,start to increase.

I think the BPS'ers and others unfamiliar with ME, would find it surprising that pwME have a stick-to-itiveness they have assumed we don't have.

 

Usually cooking, using the PC for mentally demanding tasks, or spending time with other people with lively talk. But I don't think it's activity specific.

It makes no sense to begin disliking something that half an hour ago I was enjoying, when nothing happened other than the passing of time.

 

Does this sound similar?

I am cooking a meal which I am looking forward to and have done before. I enjoy cooking. Have the ingredients and happily chopping away. Then slowly as I am getting things prepared to put in the pan (or suddenly all at once) I begin to feel dizzy, weak and everything becomes a huge effect. I drop things on the floor not just once but three times. Run out of energy to pick them up.

Feel as if every movement is a huge struggle to get my body to move instead of the happy effortless chopping at the start. Pain in my limbs. My eyes have lost their focus. Even if I carry on sitting down to prepare things it feels as if I am encased in concrete and cannot move freely. Cannot pick up heavy pans or reach into the cupboards.

I don't want to cook any longer and I don't know how I can finish or eat the meal or clean up later.

 

Yes and no. What I'm describing is what happens a bit later, if I continue. If the activity provoked intense symptoms I would stop, but if the symptoms are mild I tend to continue. When continuing, at some point this additional symptom of dislike for what I'm doing tends to appear.

 

I'm having trouble deciding what my honest response is, because I've been avoiding certain activities and durations of activities for so long that I'm not aware of my decisions to not do something. Yes, I can be doing an activity just fine, and abruptly I feel worse and know that it's simply time to give up on that. It even affects reading: I can be enjoying a book, and abruptly the words stop making sense and my attention drifts, and I have to go do something else.

 

I experience similar with cooking, I behave recently come to realise that for me the triggers in that situation are the frequent changes in posture, turning of the head, whilst thinking (whilst hungry with less fuel in the tank!). Cooking takes loads of planning and attention.

 

I remember at very severe ME I was so sick I couldn't even bear to hear the word exercise. I was getting PEM from the very simplest of tasks. I was constantly in PEM and PEM on top.

I'm now at moderate and able to do more. PEM is not severe and there are far less symptoms but I am still very limited due to having to manage my day with rest to keep at moderate level and I am hoping improving to mild. I am not fooled though by this illness. I know I have a very severe type of ME that is just sleeping. I could easily get very severe again if I don't keep managing it.