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Classic Pacing with Ingebjørg Midesem Dahl

Mar 31, 2022
Eleanor Stein, MD FRCP(C)
Classic Pacing with Ingebjørg Midesem Dahl
10:06
 

This blog is guest written by Norwegian author Ingebjørg Midsem Dahl. Ms. Dahl is severely ill with ME. She wrote the book Classic Pacing to help others learn from her experience, extensive reading and experiences of other severely ill patients. She says that as a result of her pacing approach, her health is improved and more stable (though still severely ill).

Can Pacing Actually Improve Health?

Here is Ingebjørg Dahl’s contribution to my blog page based on our email chain. This blog and Ms. Dahl’s book may answer some of your most pressing questions about how to live with limited energy (not enough spoons) while maintaining some activities that you enjoy and a joie de vivre. 

… I’ve actually been working on an email for you for some time now.

You’re right that pacing is terribly difficult - on all levels: physically, emotionally and socially. To make matters worse, people with ME are a difficult group to work with, because on the one hand we have a desperate need for information, and on the other hand it’s very difficult for us to access information of any kind. That’s why I’ve written my book so that it can be read in little pieces. However, it’s still a challenge to provide both simplicity and enough details for people to actually use the advice in real life. It certainly helps to have access to different types of media, including things like videos and webinars. Speaking of different media, the Norwegian Audio and Braille Library recorded my book, and the audio version has helped a lot of people.

You’re right that a lot of people don’t want to pace, they just want their life back, preferably in an easy way, which is very human. I think it’s crucial to find ways to motivate people. Some people grab pacing eagerly and get good results. It would certainly help if more people could reach that stage. I’m no expert on the subject, at least partly because I’ve been too ill to advise people directly.

What Motivates People to Pace?

  • I think it helps some people to learn some facts from research. Not everyone will be motivated by this, but some will.
  • There are also some who will be motivated by case histories. For those to be effective, people need to somehow feel connected to the people in the story. The same goes if they’re meeting the person face to face. If they somehow define this other person as belonging to a different category, they won’t be motivated.
  • Heart rate monitors and pedometers may motivate some, especially if they like gadgets or objective evidence. Some of the newer clocks have a function called body battery which gives you graphs showing activity, heart rate and stress. I’ve seen some of these and it’s amazing how they show that people’s batteries go flat when they overdo things and recharge when they rest.

I’m afraid my pulse watch is too old for this function, so I can’t send you any examples. By now, you will have noticed that my book doesn’t contain anything about heart rate monitors. That is because I was too ill to read up on them while I was working on the book. I plan to discuss this in a second edition, and perhaps some articles before that.

The downside of heart rate monitors, and in fact any other method, is that you have to try them to see that they work. And in order to try it, you have to believe in them at least a little.

What Are the Benefits of Pacing?

For me personally, I think the greatest motivational factor has been to focus on the benefits of pacing, both the short-term ones and the long-term ones.

Fewer Symptoms: One of the greatest benefits is a lower symptom level. Feeling less ill decreases suffering and increases wellbeing. I simply enjoy myself more, even though I stop activities sooner than I would have done if I’d push myself. I don’t know about you, but I don’t enjoy myself much when I push myself so hard that I feel really ill during activities, even when the activity itself would normally have been enjoyable.

Less Fear: Better symptom control also makes it less scary to be ill. This is particularly important for people who are anxious.

Greater Stability: Another benefit of pacing is greater stability. When I pace myself, I can make plans and be quite sure I’ll be able to go through with them. I can also complete larger projects in little bits, for instance by doing five or ten minutes a day. Healthy people tend to think that such short periods are useless and that you have to keep going for a significant amount of time to get anything done. My experience is the opposite. Doing five or ten minutes of something with a clear head every day gets me much further than trying to complete a larger amount. Using this method has enabled me to complete projects I could never have done if I had tried to do them the normal way.

What Are the Stages of Recovery from Pacing?

Stage 1. Stopping the Decline in Health

Pacing myself simply allows me to have more fun. However, for me pacing has not just been the key to greater bodily comfort right now. It has also stopped a several-year downhill spiral and turned this into many, many years of slow but steady improvement. The tricky thing when one’s health is on its way down, is that it’s easy to end up reducing activity a bit too late time and again.

In order for pacing to stop deterioration you need to reduce it enough to actually end up within your limitations. For me it took several years to reach this point, as there were so many details that had to click into place at the same time, to allow me to stay within my energy limits for any length of time. However, when things did click into place, pacing actually stopped the deterioration.

Stage 2. Stabilization

The next stage was to keep activity stable while the illness gradually stabilized. At first, any extra activity would destabilize me, but staying within my energy limits gradually became easier. With time, stability turned into gradual improvement. The big challenge at this stage is to avoid running out and doing lots just because you’re feeling a bit better, because that will inevitably lead to a crash and possibly a severe relapse. I had to learn to lean back and simply enjoy having some energy without using it all up.

3. Rebuilding Stamina

I’ve definitely increased activity over the years, but I’ve done so in tiny, controlled steps, which were sustainable. Sustainability is the big key word here. Both my capacity for activity and my quality of life have improved enormously over the years. There is no sign that the improvement will stop any time soon.

I use other types of management and treatments as well, such as dietary changes and supplements. My impression is that I benefit more from these when I pace myself as well. Somehow cooperating with my body enables everything to work together in a more effective way. I guess it’s all down to acceptance, of being able to say “right now things are like this, and I don’t like it, but I’ll have to take it from here in order to improve the situation.”

Like you say in the webinar (DEEP Pacing), this is not giving up. In fact, it’s amazing how much is possible to achieve when we work with our bodies instead of against them. Maybe some people need to hear that there are many ways of fighting. Cooperating with the body enables the body to fight the illness. It’s not giving in to the illness.

How to Break the Push/Crash Cycle?

I can understand you’re worried about the young girl who doesn’t grasp the concept of pacing. I know two young women who were both very up and down. They would crash, rest, and get gradually better, and then do far too much, far too soon and crash straight back down again. It varied a little how good the good periods were and how long they lasted, but the crash would always come because of overactivity. Neither of them had ever experienced stable improvement.

Then, some years ago, one of them decided to try really thorough pacing during a particularly bad relapse. She found a daily routine that worked for her. I think she would do things in bed for ten minutes and then rest for 20 minutes, and she stuck by this routine even when she started to feel better. She did start to rest in a chair and also began doing housework in tiny bits, but she did everything strictly within her limitations.

After four months, she began experiencing symptom free days, and after about eight months, she was virtually symptom-free all the time and she could do a lot more. Up until then, she had always ended up with severe pain every time she left the house. Now she was well enough to go to the cinema without getting symptoms at all. A few months later, she considered herself recovered, and as far as I know she is still able to work.

Honestly, I hadn’t thought it possible for somebody to improve that quickly after ten years of illness. I’ve never experienced that quick improvement myself, even though I’ve had good results from the same management technique.

What Can Happen Without Pacing?

The other girl has never believed enough in pacing to actually try it. She has continued in the same roller-coaster pattern and is now very severely affected. She doesn’t believe that her body has a self-healing mechanism, but the truth is that she has never paced herself long enough to discover if she has one. She is now so worn-down by all the suffering, that she doesn’t want to live anymore if the treatment she is currently waiting for doesn’t work. It’s very tragic, especially because she’s had some very impressive effects from various treatments, but she’s always lost it again because of overactivity.

I would urge anyone to try pacing before the illness grinds them down completely. As I said above, my impression is that pacing and other treatments enhance each other’s effects. For this reason, I think it’s important not to try pacing as a last resort, when all other treatments have been exhausted. Instead, I would suggest that people try it straight away, so that other treatments can help them along.

The link to my english webpage is pacinginfo.eu and my english videos can be found on Facebook.com/pacinginfo. My Norwegian videos and articles are on my Norwegian webpage www.aktivitetsavpassing.no.

Best regards, Ingebjørg