Energy management

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The basics

It is important to understand that there is no ‘one size fits all’ solution to fix you from ME/CFS. Everybody is different and your situation is going to vary from time to time. Overall I would say that first of all good quality rest is important. Then it is crucial to spend the newly harvested energy on activities that give you energy. For most of the people it means they should decrease the amount of activities and increase their quality of relaxation. In energy management it is crucial to build yourself up consistently. This often means to force you not to do too much on a good day, so you can go to bed with some energy you haven’t spent yet. By slowly building up and stopping the push and crash cycle, you can start to feel more energetic. It is the push and crash cycle that we want to stop to improve your energy.

Sleep

Get your sleep rhythm right and try to wake up at the same time every day. This is hard in the beginning since you probably don’t have a need to wake-up. I have relapsed a few times and everytime this feels like the hardest thing I have ever done in life. This is a moment where I ask you to push yourself out of bed. Get in a seated position, it doesn’t matter what you will do the rest of the day. The most important thing is to get your sleep cycle right. This will make your sleep more efficient in the long run. It will in time also be easier to fall asleep at the end of the day. Give yourself space to feel (extra) groggy the first few days. This is hard work and you can reward yourself for this with a treat or something. With a consistent sleep cycle it becomes easier to predict your energy level during the day, and plan your activities. Save some energy and go to bed with an energy reserve and waking up becomes easier. Your adrenals will love it.

Rest

Once you are awake, you can still allow yourself a nap or two during the day. I see naps as a recovery superpower. Preferably somewhere in the middle of the day. If you don’t need a nap anymore, you should still consider (some / a few hours of) high quality rest like a meditation or yoga nidra guided meditation. As your body prefers the fight or flight stress mode, this type of rest is really something you should push on yourself to break the cycle of stress. Even a healthy person who has a job should use his lunch-break to rejuvenate. Remember that you are doing hard work as well. Allowing yourself mental rest is crucial.

If you have made the switch to the rest and digest state of the nervous system, you can expect the following symptoms:

  • sleepiness
  • need for naps
  • bowel sounds and movements
  • yawning
  • heavy limbs
  • increase in symptoms (initially)

Note: You might also experience an immune response in the form of getting an illness. This is not necessarily something bad. Your body might have time now to heal you in several ways.

These signals mean you are starting to heal and are building some energy. I call this phase “No man’s land”. This phase can last a few weeks if you are able to maintain the rest phase. After that, you can reach the re-integration phase of recovery. A tricky place, as you might not feel so terrible and do more things than you can. The stress of that can cause a crash again. Be Careful. Don’t use all your new energy immediately. Hold yourself back with pacing!

In the two healing phases of recovery, you will feel more grounded and peaceful. You connect more with your body, your senses and how you feel. The message that you give to yourself is “I am safe”. Therefore you can arrive in the moment and in you body. The nervous system switches to the “rest and digest state”. Your body starts to repair itself and let go of accumulated stress (like a dog that trembles after the danger is gone).

The other 2 non-healing phases are about stress and disconnecting from your body. The mind becomes restless, you feel the need to distract or engage in mental projects.

To stay in the two healing phases of recovery, it is besides grounding important to limit the amount of information input. That’s why I asked you to delete social media apps from your phone. What other digital stuff can you cut out?

Rest alone doesn’t work. You also need to build up muscle strength. This way you won’t be exhausted and trigger a crash after an activity that easily. But choose nice and stress free activities.

Activities

Once you have gained some energy and know that you have some energy to spend on something, it is important to spend it on something you love doing. For me this is/was gardening. Being outside and offline is great. Others often like meditations, arts, cooking, music, etc. In the 4th module I will ask you to find a hobby of your own. Consider activities without a real purpose or pressure: like reading, walking, fishing, yoga, chatting, sex, sunbathing and swimming, snorkellig, etc. Try to remain calm and stay in that peaceful zone. You don’t have to perform!

My clients report great results with activities that involve subtle movement in combination with self-expression. Think about, Chi Gong, journalling and extatic dance (subtle dance).

It is crucial to remove any form of self-pressure, even in the further stages of recovery. Notice activities you are drawn to that cost you energy. These are the so-called coping mechanisms (We will discuss this in the 6th module). This can be, impressing someone, cleaning, pleasing others, binge eating, future thinking, emotional dodging, perfectionistic tendencies, etc. You will have to evaluate all your normal activities and see what gives you energy and what not. This is a process of trial and error.

Protect the baseline

When you are within the push and crash cycle, you have exceeded your limit or boundaries. After the horrible crash, the baseline is a little lower than before. It is therefore better to be consistent, to do every day a little bit instead of having busy days followed by crashes. If you haven’t had a crash within two weeks, you are doing great and you can consider to increase the level of activity slightly. This is called pacing. If this goes well in the first week, you have successfully improved your baseline. This is as well a process of trial and error. Don’t be hard on yourself when you have made a mistake. Try to learn from it.

Walking

A great way to improve your stamina and to relax at the same time is to go for walks. Once you are okay with waking up in the morning you can consider going for walks. You can walk slowly and should never push yourself to a length or time your mind considers right. A good indication is to half the distance or time your mind thinks is right for you. I would rather have you walking 5 minutes every day instead of 2 days a week for 30 minutes. It is the consistency that matters most. It is about getting a rhythm and giving you something to wake up for. If you have started the process of emotional healing, the walks can also give your brain an opportunity to settle itself. Whatever you do, avoid muscle aches. I used to be addicted to bodybuilding and extreme work-outs, and I still find it hard to avoid muscle aches. Walking is probably the safest work-out. I don’t recommend fitness work-outs.

Pacing

I think pacing works to help you build back some stamina and strenght, that way you won’t crash or have a relapse after an acitivity such as walking the stairs. Pacing is more than gradual exercise therapy as the main goal is to not overdo things and to keep within your limitit and to protect your baseline.

When people fall ill with ME/CFS there usually comes a period of extreme pushing themselves, before they retreat their lives and spend most of their time in bed. Many choose to continue stressful behaviour in the form of smart-phone and screen addiction or desperately looking for a magic pill.  After several months, people might be too weak to stand up. Both of these tactics don’t work, instead people need a solid baseline to be able to do some activity, but don’t do anything out of “pushing”. This “pushing” energy is very mind-oriented and my goal with the program is to change it more to “feeling”. What do you feel like doing without any pressure?  What are your impulses?

Social events

As humans we are a social species. Connecting with other people is crucial for any person, especially during a recovery. With most illnesses, you can expect gifts, cards and fruit baskets from your friends and family, whereas with CFS you will probably feel even more isolated. It is important to seek contact with friends or intimacy with a partner. But where you usually had an all or nothing approach, you will need to settle somewhere in the middle. One hour of chatting with a friend might be all you can do. It is better to leave when you still have some energy left, instead of leaving drained and in need of a few days of rest. When you choose your social events carefully, you can also see what situations drained you and what moments gave you energy. With whom do you really like to spend your precious time? What gives you joy?

Reward yourself

After an activity I recommend you to soothe yourself with a little treat. Give yourself as well some high quality rest, so that you can rejuvenate and can maybe have another moment of joy that day. I have discovered that the ‘inner-child’ plays a big part in developing symptoms.  When you soothe and reward yourself after an activity, you can reprogram that part of your psyche, that it is okay to be active. It is the ‘inner-child’ that feels unsafe and creates the initial symptoms. I recommend baby steps in your recovery. It is going to be a boring period at times. Partly because you can’t distract yourself with activities and also because you are going to create a low key rhythm that you can stick with. So, better to make it as pleasant as possible with lots of self-reward and treats. “I am so happy I walked for seven minutes that I will treat myself to a little chocolate and close my eyes for a bit.”

Should-do’s

There will always be things you need to do. Especially when you have climbed in recovery and are cooking for yourself etc. Doing the laundry, emptying the dishwasher, vacuuming the room etc. It is key here, to not feel pushed and rushed to do these things. You can look around in your room and see a pile of laundry and a bed that needs to be cleaned. It is likely that you feel like you need to do these things quickly and in-between the more important parts of your day. This is a mistake as it stresses you out, and stress activates the fight or flight mode. The rush-thoughts are enraging the inner-child that doesn’t like to be rushed with to-do lists. Sometimes when I see all the things I should be doing, I can suddenly find myself doing things rushed and only half of it. It doesn’t take long for small symptoms to come up. It is better to do these tasks and errands slowly and take your time with it. You don’t have to do all the things at once.

Activity – stop- activity – stop

To observe whether an activity gives you either joy and peace or anxiety and fatigue, it is crucial to become present and build in pauses between each activity. You can become aware of any urges or feelings it has given you.  Truth is that most of our ‘normal’ activities drain us. Even our thinking style can drain us. Who are you doing things for? In reality we are selfish creatures and even pleasing others serves an egoistic purpose. To get something from the other that we would like to receive ourselves. Better to analyse this and give whatever you need directly to yourself (recognition, time, love, respect, attention, gestures, etc.). Whatever you think you need in the external world, should be given by you to yourself in your internal world first. By stopping in between and allowing yourself some time to calm down your nervous system, you are not only soothing the inner-child, you are also actively learning about yourself. A crucial process in recovery.

What are you talking about?

Be careful for excusing yourself and trying to explain your situation to others. Their approval won’t do anything for you. Either people understand you, or they don’t. If people judge you, they are not worthy of your friendship. If you are constantly talking about your symptoms, you are actually making it worse. This is neuroplasticity being used in the wrong direction. You don’t need an excuse to not be involved in what others ,or your ego, expects you to do. You don’t need to be a specific type of person. Instead life has created this situation for you. Maybe to destroy the ego and set you free from a tyrannical egoic mind? It is better to flow with the current than to swim against it. It is better to embrace the situation than to fight it. “Hello fatigue, what are you telling me today?” Sometimes it means that you need some emotional healing (which is exhausting).

Sometimes you feel the need to talk about your symptoms, do this only to people who know and understand you. Although many people care about you, you are not waiting for advice from someone who literally thought 10 seconds about your situation. Very often people just don’t get it. They might even say things like “I am also tired”, after they just did sports or something.
Tell your loved ones also to not always ask you about how you are doing. This will let you focus on the symptoms even more.