I've heard many "rules" or guidelines when it comes to pacing and M.E/cfs.
My M.E./CFS specialist is a HUGE proponent of pacing so I feel like these rules (and versions of these) have been drilled into my mind.
1. The 10% rule: Only increase activity by 10%. For example if you can walk slowly for 10 minutes and you want to bump it up, increase your walk by 1 minute.
2. The 50% rule. Assess your energy at the beginning of the day and do only 50% of what you think you have the energy for. That way you keep a "balance" in the energy bank.
3. Make sure you can manage something consistently without crashing for 3 months before you increase your activity level.
4. Small increments. Break up tasks and activities into small increments and take rests in between.
5. Learn your warning signals: If there are symptoms that appear when you're on the verge of "too much" (e.g. tremors, sore throat etc.), learn to heed them rather than pushing through and incurring a crash.
6. Rest on the "good" days. When you're having a good day, don't try to get everything done. Instead, rest the same as you would on a bad day.
During the last two weeks I've broken every rule listed above.
In a scientific way, I'm conducting an experiment on myself. I could never endure this schedule long-term. It's a short-term experiment. And it's not like I'm trying to work an 8 hour day. I'm just trying to manage 2-3 hours of class 4 days a week. But for someone with moderate M.E. this is A LOT!!!!
Feeling as viral and fluy as I do, emotionally and mentally I couldn't keep this up for long.
But can I manage two more weeks of it (both physically and emotionally) without instigating a major relapse (vs crash)? That is the question.
Yesterday I was quite crashed and thought seriously (again) of heading home.
Today I pushed too hard AGAIN and left class when I was shaking and dizzy rather than leaving BEFORE it became unbearable.
I'm very clearly breaking all the above rules.
Now the weekend is here and I will try to follow ALL the rules at least for two days.
I think your doctor must use Bruce Campbell's program on pacing..or a similiar one. I try to do the same. I was wondering how you were doing. I do have a question for you. When you break all the rules like you are, do you recover in two days? or does it take longer? When you go home will you need to rest for weeks or months to recover? I truly am curious about this....and am keeping you in my thoughts. Hope and pray the weekend rests are very helpful.
ReplyDeleteGood questions Renee. It seems to be a little seasonaly dependant. In the winter and spring, two days of class would have put me in bed for weeks. As you know, a short outing had me in bed for 10 days at a time.
ReplyDeleteWill it take me months to recover from the overall experience? I guess I don't know yet. When I did a similar thing two years ago I was back to some little bits of functioning by the fall. However, I remember Aug. was a recovery month.
I remember in the beginning trying to work with this illness (full time then a couple times part time). I always seemed to manage for a little while...once for 4 weeks, then eventually I would get worse and worse (sicker and weaker) until I had to quit completely.
Two more weeks and then your done? I hope you make it through and I hope the recovery period is not too long.
ReplyDeleteI guess in the end the question is "Is doing this worth the payback that is coming?"