Morning
Thanks very much indeed, Bio. Appreciate your thoughts.
Hi
Firestormm. You are correct that terminology can be ambiguous. Bob helped out with some of the definitions. Activity is any action or movement or behaviour (mental or physical). Exertion is effort to conduct activities in general. Exercise is physical routines to improve fitness or health.
Makes sense. I would perhaps say 'Exercise is a
specific physical routine designed to improve fitness or heath' but that's just me and I see you've covered this in your following paragraph:
My original post said "exercise for the sake of exercise", which I changed to "exercise for the sake of activity". But I do regard exercise as a specific and separate type of activity compared to day-to-day living activities.
Just pondering if, for a disabled person, exercise should assume a greater priority in terms of one's list of activities? Sacrificing something else for the sake of ensuring - where possible - a walk each day or couple of days etc. I would I think, for example, if finances permitted, employ a cleaner in order for me to be better able to get some exercise. This could mean I might exercise more often - my list of 'things I must do' would diminish etc. Then again - and knowing me - I would probably use the additional 'freedom' to work more. But that's just me. However, if I could employ someone to lend a hand - I would consider that a part of 'managing my condition and my life'.
I do think "activity management" is essential but very personal and should be autonomous, and it is good to do as much as practical without worsening overall condition to avoid the consequences of deconditioning, but it should not come at the cost of more important activities.
Not sure - in practice - quite how 'autonomous' daily life can possibly be, but I take you point. Depends on your responsibilities. I simply cannot imagine having a family and dealing with all of that added responsibility on top of all of this at the moment - but others have to. I think any activity management has to remain elastic but we all have different priorities and needs.
'Life' is also not static after-all - but it's the methods, the techniques, and 'tricks' if you like, that are important to learn to be able to try and cope with what we need to cope with; and yeah I suspect we 'old-timers' have learned in large part, the hard way: but I know I have picked up some bad habits. I don't think it unhelpful to revisit my education and to learn from other people about how they manage.
I doubt most long-term patients can go beyond the illness-imposed limitations, so do not feel bad if that is where you still at or if it is difficult to fight the urge to do more, it does get more familiar and acceptable with time.
Thanks. What frustrates me is that there is no 'limitation' i.e. it is not a solid ceiling. It is not tangible. I cannot get a bead on 'this activity, for this duration, expending this much effort, will result in X' and 'combined with this activity.... will result in X'. I don't think any of us can - not looking at 'the illness' in isolation. We are all different. We all have different things we need to do, want to do, and
can do repeatedly and reliably, or as a 'one-off' significant event.
And I am not certain how this can all be related to '
illness severity' or '
illness-imposed limitations'. Or even that it should: although when making benefit decisions and even completing scientific experiments someone somewhere has to draw a line; and that's where as an individual I have acceptance problems: I cannot accept their decision where to draw that line let alone interpret what it means and how it is applied.
In my own experience, which was frequently acquired and learnt the hard way, there is simply no escaping the activity ceiling. It may vary in relation to current illness status/severity, but it is there and no amount of behavioural trickery or engaging in different types of exercise fads can evade it. When flirting with or pushing through the activity ceiling, which is often unavoidable due to daily life and other demands or interests (no one is perfect), sooner or later you have to pay for it, and if you do not pay now you will pay even more later.
Part of managing or trying to manage my life now includes catering for appropriate and necessary rest. The Management course I am on now - is all about including rest in one's daily schedule. And the level of rest required compared to the effort expended is such that it renders me unusual. Disabled.
And I would agree - even with this 'pacing' approach; that fluctuating 'ceiling' is still ever-present but that it usually let's me know. I will 'hit a brick wall' the trick however is trying to anticipate the wall and then figure out what to do next. And I am still finding that if I stop, I stop i.e. if I rest I find it exceptionally hard to get back into it.
So my 'activity window' that occurs most frequently in the mornings, and last for about 4 hours I suppose, gets packed! I shove as much as I can into that 'window' and then flop for the rest of the day. But yes, of course, 'Life' frequently interferes. I cannot operate in a bubble.
So demands are made that need satisfying which means I need to learn how to try and work that window if I can. In some respects this is already working. It's had to. Moving from parents taking care of me to living again on my own - has meant it needed to. Looking for the missing 'purpose' in my life, and finding it with e.g. some voluntary work, means that I also need to try and make my 4 hours occur at points throughout the day (and night sometimes). So am I 'doing more' overall than when I was living with my parents? Yes. I am. I have had to.
I still get help, sure. Parent's in and out. Home care. Certain tasks are taken away from me. New tasks have been taken on by me. I still have days when I am wiped out - but this isn't always through previous 'over-activity'. I just get like that - that's my ME (although it could also be triggered by other things: a cold, upset tum etc. we ain't immune to life's events), as is the degree of effort required by me to do the tasks that I do do.
I retain my intelligence - but my ability to apply that intelligence has diminished: and yet I do need to apply it - so how can I do this? I retain my knowledge of how to complete tasks but my ability to complete them has diminished: and yet they need to be done - so how do I do them without exacerbating my symptoms if I can? And more successfully than I have done in the past? (Rhetorical questions)
Trying to trick the activity ceiling with smaller increases over longer periods just ends up delaying the inevitable and even causing a more protracted crash. The body simply does not become accustomed to it as expected and claimed in the GET model. Recently I have observed that some seemingly "spontaneous" crashes could actually be explained when accounting for total activity levels over the last several weeks or even last few months or more, the activity ceiling applies much further back in time than obvious post-exertional symptoms would indicate.
I do think that looking back I have, overall, managed to 'increase' my activity level. I am doing more things and - generally - more successfully. Why? I do more now to lessen the impact of my health condition on my life - to accommodate my poor health - than I did before and am able to live on my own. Maybe the why isn't as important. The fact that is it hard - bloody hard - to accomplish even the most 'menial' task - like sometimes reading - is all the reminder I need that I have a disability.
If I am feeling worse and unable to accomplish or even attempt something that is a normal routine for me: then I too can and do look back and think - or someone will say - 'well you did do X the other day'. To what extent X has influenced my current state I honestly cannot say. I think more can be involved than 'over-activity' alone. For example: if I read something - a novel - one day, it may require
more effort on my part and result in less success (duration, understanding, enjoyment); than I gain on the next day when reading that same novel (once I have revisited what I have now forgotten!). Why is that? Who knows...
When violating the activity ceiling, which for me is usually more like a thick rubber band than a strict glass roof, if you do not learn to recognise and heed the numerous subtle and overt warnings of a pending crash (pay it back with decreased activity), sooner or later the Pied Piper will come and collect even more, sometimes suddenly.
I like this analogy
With me everything gets harder - concentration, understanding, movement, muscles, pain, and stimulants get more pronounced - noise, smells, sounds, etc. etc. - the 'fatigue' descends as a cloud. Indeed I tend to look at 'it' as a cloud because I can push into it - or against it - parts of it - all of it; but never through it. If it's hitting my mental function especially hard - then I can switch to an activity like taking a walk; if it's hitting all of me and I feel I can't accommodate then I'll invariably rest. I can't however, and am not sure it's possible, to anticipate to what degree an activity will exacerbate something and plan my day accordingly in advance.
The question remains, how does a patient know their activity ceiling if they never push the boundaries? It is a myth that patients are generally too scared to test the waters of their own perceived activity ceiling. Testing the waters occurs naturally when living life, often there are unexpected demands, and ongoing temptations to do more.
Absolutely
It is a myth. Bastards! It takes a lot of inner-strength to keep on trucking, to keep testing and probing, and returning to test again. And sometimes 'new' things are possible: but again I do not yet know how we can say this improved ability to accomplish X can relate to improved ME.
I have no problem with patients carefully testing the waters of their own limits, but I have a problem with patients being fooled into thinking that by default there is nothing really preventing them from a full recovery with graded activity or exercise. It is deceptive, offers false hope, unscientific, and unethical. I starting writing more about how this all relates to GET but maybe I will post it later. There is no objective evidence that GET can overcome this activity ceiling as claimed or alluded to, the limited evidence available even suggests that it does not.
I agree - again
Not that anyone has ever said to me that GET or GAM does lead to recovery or even can lead to recovery. However, it has certainly been implied - in the media and by PACE. We only hear about the positives and never the negatives. Even the PACE headlines of (from memory) 40% failed to mention the 60% and failed to focus on how important this improvement was overall to the patient and what it lead to them being able to escape from e.g. benefit dependence.