Post Exertional Neuro-immune Exhaustion (PENE*) describes what happens to ME patients after minimally extra exertion. Most ME patients employ various pacing techniques during an event to lessen these effects.
Yet occasionally life happens and we end up doing more than we should...
Ironically, after an outing I often find that adrenalin, and other happy hormones persuade me that I'm not really so very ill at all, and I find I'm at risk of "riding the roll" and doing a bit more for a whole 24 hours after an event!
Listening to others talk, and it would seem I'm not the only one. The temptation to get things done, whilst the going is good is huge!
However this window is a danger time, because for me the worse of the PENE falls 48 hours after the event. That's when the inflammation response is likely to go for my head, my muscles, my joints, my eyes, my ears..... etc. etc.
And if I've carried on doing things in between the event and the PENE hitting, then surely that is going to make everything so much worse when the time comes??
Ironically, after an outing I often find that adrenalin, and other happy hormones persuade me that I'm not really so very ill at all, and I find I'm at risk of "riding the roll" and doing a bit more for a whole 24 hours after an event!
Listening to others talk, and it would seem I'm not the only one. The temptation to get things done, whilst the going is good is huge!
However this window is a danger time, because for me the worse of the PENE falls 48 hours after the event. That's when the inflammation response is likely to go for my head, my muscles, my joints, my eyes, my ears..... etc. etc.
And if I've carried on doing things in between the event and the PENE hitting, then surely that is going to make everything so much worse when the time comes??
This is why we also need rest directly after an event. Perhaps we should name this rest too. I suggest we call it:
Post Emptive Rest: This is real rest AFTER the event but before the onset of PENE. It is central to how I manage my life now!
You see, I have one thing I really don't want to give up doing. I do agility with my dog Finn, and to do this I take extra rest both before and after the event... (& I also take quite a few other precautions to get my 60 seconds in the ring, but that is another story. ;) )
You see, I have one thing I really don't want to give up doing. I do agility with my dog Finn, and to do this I take extra rest both before and after the event... (& I also take quite a few other precautions to get my 60 seconds in the ring, but that is another story. ;) )
Anyway in my view Post Emptive Rest on the day after a bigger-than-normal day is the most important rest of all, because in my experience doing something extra two days in a row has never ended well.
**************
Other Thoughts of mine on this:
Well enough to drink coffee? May 2015
Do you STOP soon enough? March 2015
**************
Other Thoughts of mine on this:
Well enough to drink coffee? May 2015
Do you STOP soon enough? March 2015
so helpful to read this after attending a family party where I arrived most fatigued, was then asked to make a speech without warning. The aftermath is not just more fatigue but loads of poor feelings about my competence. Will try to follow your great advice and really rest up tomorrow. Another brilliant post, Sally, timed to perfection x
ReplyDeleteI think it is difficult for family to understand. We can look well in the moment - and often feel quite well at the time.... As you say the aftermath is the problem. xx
DeleteGreat, we need more and more of this sort of advice!
ReplyDeleteThank you Nancy.... I think I write as much to remind myself as anything else! :P
DeleteWhat a great piece! I recently blogged about post exertional malaise and so I thoroughly enjoyed reading this x x
ReplyDeleteJust checked your post... http://memyselfleanne.com/?p=181
DeleteYup... that's just it isn't it! Meh! Such a life we lead!