We all want to improve our energy and 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.
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.
Once you are awake, you can still allow yourself a nap or two or three during the day. Preferably somewhere in the middle of the day. If you don’t need a nap anymore (progress), You should still consider some 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 brake 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.
For a person who is around 60% recovered, I reccomend at least 3 hours of complete rest every day. These hours you will lie down, do nothing and wait until an hour has passed. This will rejuvinate you, but initially you might feel extra tired from this. Eventually the feeling of being drained will be replaced by feeling tired and sleepy. If you yawn and experience bowel-movement-sounds or a slight trembling of the body, you are realing stress and doing great!
If you wake up at 8:00 AM you can e.g. plan one hour of rest at 11:00 AM, 3:00 PM and 7:00 PM. Later you can change it into 2 full hours around 12:00 AM and 5:00 PM or only one hour. In between those fixed hours you can choose an acitivity.
It is important to really rest in the resting time. Turn off your phone and connect with your body. Do you feel drained and fatigued? This is not bad, it is the reason why you are resting. Never fight your fatigue, especially during a rest break. Eventually you can become aware of your stress levels by e.g. checking in with your heart rate. If this doesn’t feel calm, force yourself to rest. It can take a few hours of rest before it gets calmer.
In real rest, I always tried to submerge into my body and the bed and I really felt the fatigue. During rest I learned to not resist the fatigue any longer.
As many of us know, rest alone doesn’t work. I’ll come back to that later in this blog.
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 and laughing / fun. Being outside and offline is great. 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 that come into play (6th module). This can be, impressing someone, cleaning, pleasing others, binge eating, future thinking 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.
Consider activities without a real purpose: like reading, walking, fishing, yoga, chatting, sex, enjoying the sun in a hammock, etc. Try to remain calm and stay in that peaceful zone.
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. Also know that by not increasing your baseline, you will remain stuck.
Personality and emotional healing
You probably know by now that I am a huge fan of emotional healing (For the ones following the Alignment recovery program, this will come later in the 8th and 12th module.) I find the psychology of disease fascinating. The link between the psychological state and disease have been proven over and over again and I will not deny the connection in favour of people who wish to remain a victim. The personality of someone with ME/CFS is a goal driven and ‘all or nothing’ one. These traits have their ups and downs, but have gotten too extreme in someone like us. We have to learn to moderate ourselves and understand the primal need inside us to keep pushing our boundaries.
A personality doesn’t really exist and therefor the urge to be an ‘all or nothing person’ is learned behaviour. It is a coping mechanism (6th module) to deal with an emotional wound. As Gabor Mate writes in his books, the body is saying (screaming) ‘NO!’ for you.
I recommend reading a lot about psychology. The books in the self-help section are very helpful in the process of understanding yourself. In the Alignment recovery program, you will receive basic information and I provide books to explore this further if you want.
Even better would be to start a long-term psychotherapy treatment when you have built up sufficient baseline energy. I haven’t met anyone who healed from ME/CFS because of a treatment like this though. Lower the expectations and use a psychologist to learn as much as you can from his or her. I sometimes advise to use your psychologist for a while and then drop them and leave them behind. Their knowledge about ME/CFS is limited, don’t accept any labels they offer about somatic conditions too early. ME/CFS is a dysregulation of the nervous system. Reducing stress should be your focus.
There are probably a lot of tears and inner screams that need to be released by you. This is hard work and costs you a lot of energy. Don’t make the same mistake as I did, limit the amount of time you give to emotional healing! Make it a part of your rhythm. When you become aware of the body, with for example a relaxing body-scan, you can explore what you have stored in your body. Emotional wounds are always stored somewhere in the body. The urge to think, analyse and conceptualize comes often from trying to escape the body, because it unconsciously feels unpleasant. Thinking and doing things is often a distraction.
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 to go 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 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 body building and extreme work-outs, and I still find it hard to avoid muscle aches. Walking is probably the safest work-out. Can you walk and empty your mind at the same time?
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 for that matter 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 for 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 who do you really like to spend your precious time? What gives you joy?
After an activity I recommend you to sooth yourself. Give yourself as well some high quality rest to rejuvenate. Maybe you can have another moment of joy that day. I have discovered that the ‘inner-child’ plays a big part in developing symptoms. When you sooth and reward yourself after an activity, you can reprogram that part of your psyche, that it is okay to be active.
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 treat myself on a little chocolate and close my eyes for a bit.” “Today I have slept 2 hours next to a beautiful lake and I went swimming.”
There will be always 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 the half of it. It doesn’t take long for the stress to rise in me. During recovery these moments were crucial to me. Via trial and error, I learned at those moments to force myself to rest and take a nap. You don’t have to do all the things at once. Eventually you can do more this way. It is better to do these tasks and errands slowly and take your time with it
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 to 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). At other times tuning into my fatigue made me sleepy. Not fighting symptoms made me access the ‘rest and digest mode’. This is what we want and where we build ourselves up.
Very often although, the fatigue is telling you that you have made it easy to feel crappy. This is neuroplasticity (7th module) and you are in need to rewire the brain. You can do this by faking to feel good or calm. Pretend you are in a different state, instead of focussing on how crap you feel. You can do this for example with hypnosis. In the theta state of the brain, you are very prone for suggestions and you can easily reprogram the nervous system. Another approach is a neuroplasticity technigue (7th module of the Alignment Recovery Program), where you activily use your imagnination to feel better. It is not something you have to do once, but many times a day, over a long period. Using this is also great after an hour of real rest or after disturbing and stressful emotional healing.
Full recovery or contentment
Maybe applying all these tips won’t make you recover fully. This can very well be the case. Most people I have talked to have reached an 80% recovery with some ups and downs from watching my YouTube video’s. Seeing where they came from, 80% is amazing. I know we always want more, but often the big jumps in our health happen after an insight that only you can get. Something nobody can explain to you. Recovery is so personal and everyone is unique. Instead of searching for answers outside of yourself it might be better to use your own intuition (after you have calmed down). Learning to use and feel your intuition is a big process on its own.
The final 20%
Maybe the desire to reach the last 20% of health is the hardest to resist. You feel fine and want to do more. When you push yourself, you get confronted with an energy dip. When you are at 80% you can also force yourself towards the full 100%. For a few weeks this might work and give you the idea that you have finally arrived. But you were too early and as a result you have stressed yourself. You once again ignored the unconscious rage from the inner-child, was involved in not acknowledging your body and you might be back at 50% within a few weeks or months. This has happened a lot to me.
Luckily I have learned that getting back to 80% can go faster than expected. Of course you have to mourn over the death of your previous recovery, but you know what to do. Thus it is better to be consistent and to hold yourself back than to push yourself a little further than you actually are. Always safe a little energy to create a reserve.
Sometimes we need to push ourselves a little however. Within our fragile limits we should always try to have as much joy and connection as possible. Very often this is also exactly what our inner-child wants us to experience.
I was steady at 80% health for a long time. In that time I kept working on my inner world and eventually healing happened to me. I believe in the quote ‘As within, so without’. And I came to a point where I was so healthy internally that my physical body only had to catch up. This cause of full recovery can be different for everyone. But I firmly believe that once you are ready, it will happen.
Lots of unconscious behaviour can trigger stress and symptoms again. Not feeling emotions means we store them in the bodies stress bucket or feel them as symptoms. If we then continue this stressful path, we miss out on its message and continue stressful behaviour.
This often happens in emotional difficult periods. When you detect the underlying cause behind the symptoms, you might be able to revert quickly to the ‘normal’ state. By stressing yourself and involving yourself in pushing your limits because of the initial symptoms, you can expect a downfall within weeks.
If you are looking for someone who has recovered from ME/CFS through the expectations that they never experience this type of fatigue anymore, you might be having the wrong expectations. If you experience a relapse, remember to calm down your nervous system and don’t push any behaviour on yourself. Back to basics and you won’t spiral downwards.