Reflections on One Year of Careful Pacing for Chronic Pain

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For the past 52 weeks I have been following a careful pacing plan for chronic pain. Every single day I open up my excel spreadsheet and log in every single one of my activities for the day. Each activity corresponds with a numerical quantity and at the end of the day, and again at the end of the week, I can add the numbers up to see how many points I used.

You can read in depth how to set up a pacing plan like this here and here.

Over time, this pacing strategy has given me an accurate understanding of what my body can do and handle. It’s not 100% full-proof, but it is surprisingly accurate. And I am happy to say that in the 52 weeks I have been using it, I have completely avoided severe flaring and major relapses.

Do I still flare? Of course. I have little flares on a regular basis, and medium flares every month or so. You can see this from the ups and downs of my chart. Something will trigger a flare, and lead to a sharp drop in my activity levels. Then over the next weeks, I build my activity levels up again, slowly but surely.

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It is impossible at this point to avoid all flares, but the fact that I have avoided the type of flare that last for months and relapses that last even longer is a huge success.

Using a pacing chart has shown me that pain is more predictable than I first believed. My pacing chart has helped me become an expert on my pain in a way that never would have happened if I were trying to analyze my days in my head. Using my chart, I have learned how many points I can use in a day without flaring. I have learned how many points I can use in a week without major issues. I have learned the most effective ways to save points for later, and eek out all available extra points one day without having massive problems the next day. The numbers rarely lie.

My pacing chart has helped me manage busy weeks by planning ahead. I look at the week ahead of me on my excel spreadsheet and map out when I will shower, when I will go to work, and when I will manage the cooking.

My anxiety has decreased since I began using my pacing chart. When the numbers tell me I can do something without major consequences, I get up and do that activity without anxiety that it will lead to a relapse. I now feel more comfortable doing things that I had stopped doing before. The chart gives me a semblance of control over my days, which helps me enjoy the activities that I can do more.

My pacing chart helps me make more progress with my PT and short walks. I am able to give preference to these activities towards the beginning of the day and use my chart to figure out how many points I have left for other things I want to do.

This type of pacing does require a lot of effort and self-restraint. It takes time to log everything and plan everything out. It takes a lot of dedication to keep up with it every day for an inevitable period for time. But I can honestly say that it has been one of the most successful pain management strategies I have tried that is able to be done on your own, from home, no money required.

Do you have a system that you use for pacing?

9 responses

  1. So glad for you Esther! That’s yet another victory for pacing and I can’t wait till it gets more love in the medical field out there. Pacing is what got me better and I know that not pacing these past months has had a bad cumulative effect on my health. Mind you it’s got a lot to do with my husband’s new job which takes way too much out of him, our time, and I when I have to do stuff on my own because of his new job. Time and energy that were spent on us before and solving issues before he got this new gig add a manager.
    So I am wondering how you do it with your husband? I keep not being able to let him do it all, then I crash myself more and more, anxiety over my next shower goes up or when I’ll be able to eat food I can digest even. I know it’s making worse but he’s already doing so much and we have no help. Unless I convert to a certain religion I won’t get help from local groups. How do you deal with that?
    I keep finding caregiver forums on people taking care of old parents or spouses taking care of cancer patients. But nothing on long term illnesses.
    My hubby used to have energy and positivity a lot but he’s drained. I feel so guilty yet I also have to work on not thinking this is my fault like I could cure myself and stop a gambling or drinking problem ruining my family for example.
    So yes how do others do it?

    • I understand what you are saying – sometimes we are physically unable to pace because stuff just has to get done and there is no way around it. I have been in that place before where I had SO few spoons that if I didn’t go over then things like eating and showering would never have happened. I wish I had good answers for you. I know that I have gotten better at just letting things go undone. For example, our apartment is an absolute disaster right now, and it is driving me crazy, but I’m leaving it be until I know it won’t cause a flare up. I have also simplified everything to as simple as it could possibly be in terms of cooking, shopping, etc… Sorry you are in that place of feeling guilty and like it is your fault. I have been there too 🙁 But it most definitely is not your fault, and I know that you do everything within your ability to care for yourself and your husband. I hope that you can find some ways to conserve energy and get back to pacing so your pain levels can hopefully go down. Thinking of you <3

  2. That is wonderful, what a fantastic achievement! May I ask, do you also keep track of how many steps you take per day? What would your average steps be per day? Is it something that you see yourself doing year after year? Thank you for your post.

    • I do not keep track of steps, but was just looking into it because it would help me be more specific with some of my charting. But when I looked into it, most of the devices that seemed good were pretty expensive. Do you count steps? If so, what do you use? Perhaps for a birthday present I will buy a fitbit. I am going to keep doing the pacing indefinitely. It has helped me so much.

  3. Delighted that the 52 weeks have reaped such reward.
    Pacing is key, I think, and having done something similar to you a number of years ago, I feel I have far greater insight into what’s manageable and what’s a bridge too far.

    • Thanks for letting me know. Is it all bright colors that are difficult for you, or just red in particular?

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