With CFS/ME the importance of balance and rest, even in times when one might feel energised, invincible, and coping is vital. In the past you may have been able to push through your limits, juggle many things at once, be responsible for many things, be okay with little sleep and strenuous activity, but it’s no good focusing on how you were and the past. How you were living was most likely unsustainable and the sooner that you accept how things are now and adapt your lifestyle, the quicker you can be rehabilitated and learn to manage CFS/ME.
The often sudden onset of CFS reminds me of how psychosomatic illnesses are our body’s response to no longer being able to cope with the mental strain and stress. They physically force us to slow down or stop. Everyone’s window of tolerance for stress and activity varies and it is important that you identify what yours is and set it slightly lower than what you think it is. Ensure rest surrounds activity. So rather than fully charging a battery to then drain it, which would require considerable time and energy to recharge it, get into the habit of topping up the battery throughout the day.
Activity includes physical exertion, mental activity (including tv and reading) and emotional (getting angry, stressed, taking on others’ problems), so factor this in and prioritise. The latter is particularly important and neglected, so for example if you have a difficult or draining phone call, you need to acknowledge this and factor in time to rest around this. Discover what and who is energy zapping for you and the lag time for it – sometimes you will feel the effects immediately, other times hours or a day later.
One of the biggest problems with CFS is that people sometimes get worse having been given a diagnosis, so it is important to also pay attention to what you are able to do and keep doing it. However what is useful about labelling it as such is the incorporation of pacing techniques.
Information about pacing can be found here: https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf
Getting into the habit of pacing, being balanced, identifying your window of tolerance and not always pushing to exert yourself to the max in mental or physical activity is vital. You have to learn to get good at doing nothing and switching off to fully relax.
Perhaps you feel like you have one problem after another, maybe mental health issues and now your physical health is also being effected and making life hard. There is no coincidence in that, managing stress, distress, depression, anxiety for example is tiring and will take its toll on the body, until effectively managed. Pacing techniques and therapy are important in this. Stress makes us ill.
Simon du Plock’s experience of living with ME is interesting: