November 11, 2012
Pacing (or My Attempts At Pacing)
I hear (see?) the term Pacing bandied about across a lot of ME/CFS websites. There are classes in it, studies on it and recommendations for it. I thought I paced myself pretty well most of the time and when people asked what I could do to manage my condition I frequently answered “Pace myself”. I’m not sure when I realised this had become a researched treatment.
Recently in a case meeting one of the Occupational Therapists was explaining that she had been working with a particular patient on Pacing so I took the opportunity afterwards to ask her what information she provides. She knows about my condition and while she didn’t have any information on her she hypothesised that a simple Google search should bring up some reasonable information and that once I read it I’d probably find I was doing it.
She was right. Pacing is an evidenced based strategy of energy conservation which is used by people with ME/CFS as well as people with chronic pain, and other energy sapping, pain causing conditions. It is a way to break a cycle of overexertion and crashing by alternating resting with activity. Yep, I did that. I was pretty pleased with myself when I read about the concept, as this is what I’d worked out on my own 😛
Okay, so there’s a little more to it, and there are some steps that you should go through to properly pace. This includes estimating how many minutes of the day you are able to do activity, prioritising activities, knowing your symptoms and eventually developing a routine and building up. A percentage of time should be spent resting for every activity, and rest breaks should be regular. The idea is not to cure but to help with trying to achieve some normality.
I’m no expert in pacing, and by no means am I successful in it all of the time. In fact there are times where I consciously fight against it. There are days where I know I should take a lift but wonder what others will think and force myself to take the stairs. Yesterday I helped out catering with a women’s group I attend regularly, which involved being on my feet for 2 hours straight. Because these ladies don’t know about my condition, and were all much older than me, I pushed against my head which said I should stop and sit because I didn’t want to draw attention to myself. Ironically I probably would have drawn a lot more attention if I’d passed out from standing for that long, but fortunately I’d make sure I was well hydrated, had extra salt, and spent the whole 2 hours wiggling my toes and stretching and managed to stay upright (albeit with some pain). Oh, and once I did take a momentary seat under the cover of keeping an older lady company.
When I do listen to my instincts though, pacing does work for me. While I’ve never sat down and calculated how much rest I need for how much activity, using my lists (have I mentioned I love lists? :P) in combination with sitcoms on DVD I get by. On a good weekend I break up jobs with TV shows I’ve recorded through the week, or episodes of Scrubs. On a bad weekend I watch 2 episodes between jobs. No denying it though, it’s something I need to keep working on.
Living in Dreamland 