I was also given the advice:
"Do only 60% of what you can sustain without producing symptoms".
Now these two bits of advice are excellent, but not at all easy to achieve. After all, if I really DID do so little, as to never produce symptoms, then how would I know if I was starting to improve?
I was thinking about this dilemma recently, and being a science teacher (prior to ME) I couldn't resist a few graphs to help me think all this through! Perhaps they'll help you too?
1. PACING ZONE. In an ideal world our daily activities would fluctuate very little. The wiggly blue line on this graph shows only minor day to day change. I aspire to this! I am told this gives my body the best chance to heal itself.
Click any image to enlarge
2. BOOM & BUST! We all recognise this one! Something comes up that we want to do - and we do it! The thrill of the "doing" releases some adrenalin - so we keep on doing that activity. It's the classic BOOM scenario. I often hear folk talking about getting as much done on their good days as they can....
However, once we come down off this high we experience a big crash downwards, and for several days or more we are in the BUST ZONE and totally unable to do our normal activities! If lucky, we can BOOM & BUST and not loose any long term ability.
3. BOOM, BUST AND DECLINE.... This scenario is much more frustrating. Sadly it seems to be the one I find myself in. Any incursion into the BOOM ZONE, not only causes a crash into the BUST ZONE, but also changes my boundaries - apparently permanently..... (I called it a lowering of my glass ceiling in a previous post.)
The incentive to avoid BOOM AND BUST is therefore much higher, than if I could simply do a week's payback to recover previous levels.
4. PLAY UP & LAY UP. This is my compromise for those special moments. It is a very cautious move away from the PACING ZONE, involving voluntary LAY UPS both before and after the activity.
The "PLAY UP" moment is controlled as tightly as possible. I stop the activity while I still feel able to do more and start the Post Activity LAY UP no matter how well I feel. It is not easy. If I've got it right then I should have almost no symptoms. Ironically, it also might seem to others that my condition is not so severe - because I tend not to enter the BUST ZONE!
THE RANDOM FACTOR. This is something that we might all encounter. A life event, or a viral infection or other wild card, can change the best laid plans. We can't control everything, but I feel we owe it to ourselves to treat our bodies as best we can.
TESTING BOUNDARIES? Obviously each time I succeed in "playing up" with out problems, I learn some-thing about where my boundaries lie. Further, by noting any small symptom responses, I can better judge how much to attempt next time.
SELF DISCIPLINE is key, because often I'll have to back out of something that I feel well enough to attempt. Friends are also likely to say things like, "Sorry you weren't well enough to join us...." and this makes me feel frustrated, because they are probably imagining me much more unwell than I actually am. Yet the concept of Laying Up is hard for well folk to grasp.
GOING FORWARD? I'm hoping that careful PACING with a little bit of Play Up & Lay Up will help me sustain my current levels and ultimately give my body the chance to heal itself...
I no longer expect recovery to be anything other than a slow process!
Links to more of my thoughts here:
Managing Illness through Pacing;
Do you STOP soon enough? March 2015
Pacing and Unpredictable Events Sept 2014
"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014
The Exercise Catch 22! Jul 2014
ME Awareness - Why NOT Exercise? May 2014
Thoughts on Travel and ME Mar 2014
The Dilemmas of Exercise and M.E. Dec 2013
Monitoring Activities for Pacing:
Monitoring ME: Part 1 - Fitbit Sept 2014
Rhythm+ and Endomondo: HR monitoring for ME Aug 2014
A few notes on using a HR Monitor for Pacing Feb 2014
Pacing for M.E. - And Using a Fitbit Dec 2013