A relevant question in conjunction with pacing is whether it is possible to do too little. Theoretically it is possible. However, most people have so severe limitations to their functional ability, that normal every day obligations become too much. In reality they simply cannot do too little. For most people the battle lies in doing little enough, and managing to do this for long enough to stabilise the illness. If and when the illness begins to improve the usual challenge is to increase slowly enough to avoid overactivity and crashing straight back down. The problem is not to work up the courage to take tiny steps forward. A minority of people with ME have a tendency for over cautiousness, which is natural if you have experienced many relapses because of overactivity. However, the body sends out signals both when it wants more activity and less activity. Experienced pacers say that it’s easy to recognize when the body wants more activity and adjust the activity level accordingly. The greatest risk of prolonged underactivity is probably present in people who have severe depression or anxiety on top of the ME. This is because lack of emotional energy may be mistaken for lack of physical, mental and social energy. It is however possible to tell these forms of lack of energy apart. Simply being aware that there’s something called lack of emotional energy can make it easier to discern them. Being aware of which behaviour patterns you tend to move into, is also an important part of choosing a sensible management approach to your ME. This is true no matter which patterns you tend to follow, whether it be overactivity, underactivity, dramatic see-sawing or other patterns. It should be noted that anxiety and depression do not automatically cause underactivity in people with ME. Whether you have anxiety or depression or not, it’s important to find management strategies which are tailored to your actual needs, not just a theory about what might be going on.
Conclusion Among people with ME it’s been well known for decades that pacing can be of benefit. Newer research shows that pacing may in fact be a necessary and essential part of keeping the illness process as low as possible. Pacing is about listening to one’s body and using the symptoms as warning signs of overactivity. You then break activities up into small bits which cause as little symptom increase as possible and take regular rest breaks to recharge the batteries throughout the day. Staying within one’s energy limits, even on good days, usually leads to the disease process calming down. With time, many people find that they can gradually do more without provoking symptoms. The process of increasing activity involves remaining within one’s limits, not trying to push the limits out. This makes pacing distinctly different from graded approaches such as graded exercise and cognitive behavioural therapy with graded activity. For most people, pacing increases quality of life, and can enable people to lead a fulfilling life despite being ill.
Want to learn more? Check out my website www.pacinginfo.eu, where you can find articles and read the first chapter of my book “Classic Pacing for a Better Life with ME”. The book’s Facebook page, www.facebook.com/pacinginfo, contains videos with short talks about pacing, suitable for those who have difficulty reading. You do not need a Facebook-profile to view this page.
Copyright Ingebjørg Midsem Dahl 2019. ME groups are welcome to reprint this article in their newsletter or link to it, provided that nothing is changed. If you wish to translate it, please email me: post@pacinginfo.eu
