That Thing Called Pacing – Part 5: Diaries and planning.
By Ingebjørg Midsem Dahl
Those of you who have read a bit about pacing in advance may wonder why I haven’t yet mentioned anything about planning and activity diaries in the previous articles in this series. These can certainly be valuable tools, but they’re only tools. The main principle and central point of pacing is to stay within one’s energy limits. There are many ways of doing this. Interestingly, following a daily routine does not automatically guarantee pacing. You’ll only get pacing if the routine is constructed so that it actually helps you stay within your energy limits. If the routine is set too high or too low you may end up with enforced over- or underactivity. The problem of enforced overactivity is probably greater than underactivity, particularly since many guides to this type of pacing stress the importance of not lowering the activity too far. Using an activity diary can help you find out which level of activity is suitable for you, but writing one could lead to overactivity for someone with severe ME. Plus, writing a diary in itself does not automatically lead to stopping in time.
Simple activity diary An activity diary can be written down or dictated for instance to your mobile. In a simple activity diary, you note the main activities of your day, such as having your hair washed in bed or going shopping, depending on how ill you are. You also rate your symptom intensity on a scale from zero to ten. This type of diary will typically show that if you do more than a certain amount of activity every day, your symptom level will rise and you will be forced to do less. The point of the diary is to help you figure out what you can do every day without causing symptom increase.
Detailed activity diary In order to find the optimal distribution of activity and rest throughout the day, it is useful to write a detailed activity diary, provided you have the strength for it. In this diary you write every activity, large or small, and the rest breaks. You also rate your symptom level before and after each activity. The point here is to find out whether an activity or group of activities is too long or too strenuous. You can then rearrange activities in a pattern which does not cause symptom flare-ups. If you have already kept a simple diary for a while and have found a good distribution of your larger activities, you may only need to keep a detailed diary for a few days to work out the distribution. Pacing tends to slip a bit after a while. The simple diary can be used as a monitoring tool to help you prevent this. However, in order for this to work you need to make sure that your particular diary shows the activities that tend to slip. For instance, if you start watching TV instead of resting, your diary needs to show the amount of total rest to enable you to discover this.
Planning Then there’s the planning aspect. A simple diary can be used to help you plan a weekly routine. If you cannot go shopping and visit a friend on the same day, you can plan these on different days. Adding survival activities like bill paying to your routine, in small manageable chunks, will make organizing a lot easier. If you follow your routine, the most crucial things will get done, and if you have to drop something you will know what it was you dropped. You can then prioritise it next week. This type of loose weekly routine suits just about everybody and makes life with cognitive problems much easier. A detailed activity diary can be useful for structuring each day. This is particularly useful if you are so ill that lapses in pacing will make you too ill to cook or eat. In your routine you will distribute your rest periods and activities so that you are able to eat when you are hungry. How detailed the routine needs to be will vary depending on how ill you are, what your life situation is like, and your personality. A completely rigid routine can be hard to follow, while a flexible one can make life a lot easier. You will typically need to experiment a lot to find the optimal distribution of activities and rest. The important thing when planning a daily routine is to scale down the routine enough for you to have some extra energy to spend if something out of the ordinary turns up. Unexpected events do happen. For more detailed instructions and how to construct a routine, you can see some of my other articles and my book, “Classic Pacing for a Better Life with ME”. It offers a full range of tools for pacing, and also advice on pacing in particular situations, such as severe ME, education and social life. The tools described in this article can make pacing easier, but they do not automatically lead to pacing. It is only when the tools are used to stay within your energy limits that they result in pacing.
Consider whether the tools in this article are suitable for you. If they are, try them out.
Copyright Ingebjørg Midsem Dahl 2019.
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