What Stops You From Pacing?… An Inquiry Into Pacing in Chronic Fatigue Syndrome and Fibromyalgia
Thou Shalt Pace
“Thou Shalt Pace” is kind of the first commandment for people with chronic fatigue syndrome and fibromyalgia. Nothing trumps pacing.
If you pace you’ll probably feel better, and if you don’t you know you’re going to feel worse. It’s like gravity; you ignore it at your peril but I, at least, ignore it too much.
Both Dr. Lerner and Dr. Chia REQUIRE pacing in their patients on antivirals and immunomodulators. The treatment simply won’t take in people who keeping bashing their bodies around. We, of all people, should be really skilled at pacing…
But too often we’re not. Some people’s idea of ‘pacing’ is to push until they crash and then ‘pace’.
The pull of the outside world can be overwhelming. The quote Johannes Starke starts out his Why Is Pacing So Hard? And One Simple Technique to Make It Easy blog, sums that up perfectly.
“I hate pacing!” It didn’t take long after we had begun the discussion section of the San Francisco Chronic Fatigue Syndrome and Fibromyalgia Self Help group meeting until a woman started railing passionately against pacing: “I know I should use pacing, but if I just lived my life in the confinements and limits of my illness, my life would no longer be worth living anyways. Sure, it hurts me not to take breaks, but I believe that this life force in me, that just wants me to be active, is a good thing, and I shouldn’t repress it by pacing myself too much.”
Pacing – being willing to give up something in the short-term for a possible promise of better health later – is difficult. For one thing, you may not know that it’s going to work. For another it’s not always alot of fun (which suggests that finding ways to be happy while not doing much would be a good thing.)
The best pacers are probably those people who know they’re going to relapse really hard if they aren’t careful, but the pull of the outside world sometime becomes too much for them, as well.
Check out an excerpt from a recent blogger who knows the dire consequences of not pacing, but still pushes too hard at times. In a recent blog on his relapses he said:
Thirdly, what makes them so horrendous is that I play a part in causing them. They usually follow some kind of infection or cold or flu. I know that I need weeks to recover from these, but on occasions in the past I have pushed it, tried to get back to activity too soon, and one day found that I simply couldn’t move any more, that I am exhausted, drained, sleepless, massively anxious, regretful, short of breath. And I know that if I had just taken a little more time, rested more, I would have got through it and out the other side. The knowledge of my responsibility in the relapse is one of the most poisonous aspects of having to live with it.
What Stops You From Pacing?
The question for this Community Reports blog is “What stops you from pacing?” Another way to ask this “What causes you to throw pacing to the winds and just go for it?” or “In what situations does your discipline around pacing break down?”
Clearly illuminating what’s stopping you from pacing is the first step to better pacing, if that’s what you want to do.
Some things that get in the way of my pacing are
- Work – the need to make money
- The dogs – I feel they must get out regularly – this is a big one for me as walking the dogs can have pretty big physical costs at times.
- Boredom – pacing can be really boring so I’d rather not do it
- I’m not entirely sure, despite all the evidence, that it’s going to really pay off…..
- The idea that I should be working all the time I’m able to work (why?????)
- Wiredness, restlessness, arousal – the wired but tired problem
If You’re Not Pacing the Way You Think You Should Be Pacing – What’s Stopping You From Doing That?
Feel free to relate instances when you knew you were going too far, but still did it and then tell us what happened. We’ll make up a report summing up the answers and present it in a week or so…..
- Heart Rate Monitor Based Exercise Program Improves Heart Functioning in Chronic Fatigue Syndrome (ME/CFS)
- A High-Tech, Low-Cost Path to Better Sleep with ME/CFS and Fibromyalgia
- 7 Ways to Stop the Internet from Aggravating Your Chronic Fatigue Syndrome (ME/CFS) and FM Symptoms
- Can a Smartphone Help People With Chronic Fatigue Syndrome or Fibromyalgia Get Better?
- Crashing! A Chronic Fatigue Syndrome Chronicle
- Conserving Energy and Coping Work in Chronic Fatigue Syndrome Except When They Don’t
- CFIDS Self-Help – provides online tools and courses on physical and mental pacing
Find good doctors, check out recovery stories, review treatments and get help in the Health Rising ME/CFS, FM and Chronic Pain Forums here