That Thing Called Pacing – Part 4: Some implications of the theory of repairing rest and healing rest
By Ingebjørg Midsem Dahl
In the previous article, I introduced the concepts of repairing rest and healing rest. According to this theory, there are two types of rest in ME. Repairing rest is rest which restores us after overactivity, while healing rest is extra rest that charges our batteries further. Repairing rest is like paying down debt, healing rest is like saving up money. People with ME who have tried to incorporate this theory into their pacing strategy, generally find that healing rest improves chances of improvement, and that greater amounts of healing rest are more effective than smaller amounts. So, if you feel that you’ve reached the glass ceiling and can’t get any further, lowering your activity level to get more healing rest, will typically kick-start the improvement again. However, the effect of healing rest varies considerably from person to person. Some people experience much greater effects than others. Factors such as immunological problems, digestive problems and infections can influence this.
The theory of repairing rest and healing rest adds nuances to pacing, which explain some of the variations in patient outcomes. At first glance these variations may seem confusing. For instance, why do some people experience improvement in their health despite being on a rollercoaster of overactivity and crashing, whereas others experience deterioration even though they pace themselves? If someone pushes himself and pays the price, and then rests a bit extra and pushes themselves again, they may in fact get regular healing rest. This could lead to a slow upward spiral. With this approach, illness activity in the body will be high and risk of relapse will be similarly high, because you don’t have any safety margin. If an unexpected event turns up, it could easily tilt the balance. People who experience unstable improvement tend to have many bad days and bad periods, but may still experience improvement over time and be able to sustain this. It’s also possible to use various pacing techniques, such as splitting activities in small bits, and taking regular rest periods, and keeping activity stable from day to day, but still spend slightly more energy than you have. This could be described as paced overactivity, and the result will generally be a slow downhill spiral. This pattern is particularly challenging because it can be very difficult to notice very slow deterioration. You’ll have the time to get used to the deterioration and adapt to it along the way, which makes it harder to notice. In fact, people around you may notice it before you do. By the time you notice it, the deterioration may be so well established that it’s hard to stop. I’ve been in this situation myself. I did eventually manage to stop the deterioration and turn the illness around, but it was very difficult. The trick was to lower the activity level enough to get healing rest every day, thereby gradually building up the energy reserves instead of worsening the overdraft.
The theory of repairing rest and healing rest also sheds light on why some people experience improvement from graded programmes. In these programmes, activity is usually lowered to a point which does not aggravate symptoms, but how this is interpreted varies considerably. Often, patients are advised not to lower activity very far. However, if a patient takes the advice literally and actually stops before symptoms increase, they would likely get a significant amount of healing rest. If a sufficient period of stabilisation is taken before the patient is advised to gradually increase the activity, the healing rest could kick-start gradual improvement. This would enable the patient to slowly increase activity. In this case, it would look as if the programme is working according to plan. In reality the improvement is caused by the healing rest, not by the gradual increase in activity thought to be responsible for the improvement by those who designed the programme. If, however, the patient is advised not to lower activity very far, they may not get any healing rest, in which case attempts to increase activity would likely lead to severe relapse. The theory of repairing rest and healing rest can therefore explain the variety of outcomes from these programmes. I am not saying this to defend the graded activity, but to defend the patients who improve from these programmes. They are often thought not to be real ME patients. Given the wide diagnostic criteria often used by researchers who use cognitive behavioural therapy (CBT) and graded exercise therapy (GET) programmes, this is a real concern. A number of patients in these studies may well be misdiagnosed with ME, but that may not be the whole answer. Sheer luck could turn the programme from a harmful one to a beneficial one without anyone realising why. The theory behind graded exercise and CBT with graded activity is that increases enable further increases, either because deconditioning is lessened or because the patient becomes less afraid of activity. In my experience, this theory is not only wrong but also potentially harmful. What patients experience, is that staying within their energy limits enables their energy limits to expand. Once they are expanding, it’s possible to gradually do more, provided you stay within your limits during the process. If you try to push the limits outwards, they will either stand still or contract. Pacing takes into account the need to stay within ones limits, even during an increase process. It recognises that it is staying within the limits that enable the body to regenerate. If this is correct, programmes focusing on increases or exercise divert the attention from what really helps. When the theory behind the programme is wrong, it’s impossible to ensure that the programme is tailored to the patient and ensures success every time. In my opinion, pacing should therefore form the basis for ME management, not GET, CBT with graded activity or combinations of these and pacing. When the theory of repairing rest and healing rest is incorporated into pacing, it enables us to optimise the pacing strategies, thereby maximizing chances of improvement.
Think through the course of your illness and consider how the theory of repairing rest and healing rest can deepen your understanding of the ups and downs. Then consider how you can use this knowledge to optimise your pacing strategy. It can help to look at typical you-scenarios. For instance, if you often begin to get better, but then crash again, the theory of repairing rest and healing rest might suggest that you increase activity so fast that you “eat up” all the healing rest, and then start “stealing from” your energy account. In this case, it could help to increase more slowly to maintain healing rest. This could prevent a relapse.
Copyright Ingebjørg Midsem Dahl 2019.
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