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Sensing Your Energy Limits

It is important for all ME/CFS patients to do as much as possible to avoid crashing and going over your energy limits. Crashing doesn’t just make you temporarily worse, it permanently lowers your energy limit. Engaging in a lifestyle of pushing yourself past your limits and repeating cycles of crashing and recovering, crashing and recovering, in order to live what you perceive to be a better life, or even to do things that seem necessary, is not sustainable. Your energy limit will lower every time you crash. You will soon lose the ability to do the things you were once crashing to do and you will then crash from doing even less. Soon your life will be much more limited and you will still be pushing yourself and crashing. If you continue this process, your energy limit will continue to go down indefinitely. You cannot will yourself to overcome your limits, it is part of having ME/CFS and it is not your fault.

It is better to place limits on yourself than to wait for them to be imposed on you by the illness. This way your limits won't be going down constantly; you will be living in harmony with ME/CFS and your activity level will be sustainable. Learn to enjoy what you are capable of doing without crashing instead of being forced to do less by becoming more severely ill. You will actually be able to do more in the future this way, in many cases much more. Because when you get worse from crashing, your physical limit keeps going down. Eventually you will crash from doing things that were once very easy for you to do. If you stay within your limits you will maintain a higher energy limit and ultimately be able to be more active.

For example, you might push yourself to the point of crashing in order to stay at a party for a whole 5 hours. Because you are crashing, your limits will get lower. Soon you will crash after only 4 hours, then 3, and at some point you won’t be able to go to a party at all. Instead, if you leave the party after 3 or 4 hours before you start to get worn out (and maybe be less physically active at the party as well), you can maintain this and continue going to those parties long term. I’m using the example of a party so this makes sense to mild patients who are just beginning to understand that they will have to give up some aspects of their lives. But this applies to everything as the illness gets worse: being upright and active doing chores around the house, cooking, being out of your room talking to people, showering, sitting up in bed, brushing your teeth, simply being in the presence of people, etc.

Of course, some people get worse without crashing, which was the case for me, but for most ME/CFS patients, if you stay within your limits you can maintain a fairly stable life.

It takes time being sick and making mistakes and learning from them, but you can get to a point where you know your body well enough to avoid most crashes.

The first and easiest method is to observe patterns in your life and remember or record what you did when you crashed. Then the next time, do less. How many times did you walk around the block? How long did you spend at the grocery store or talking with a friend? How far did you walk from your bed? How much time did you spend on your phone? How long were you sitting up? What did your caregivers do in your room? What were you thinking about? How long were you thinking about it? What did you look at and for how long? etc. Oftentimes you can figure out physical limits and sort of put yellow caution tape around the world you live in to avoid crashing from things you know from experience are past your limits. Don’t do the same thing over and over expecting a different result. Learn from every crash and adjust that taped-off limit in your mind. If you do this, you can develop a well-constructed life inside your caution tape called a routine that keeps you from crashing.

Routines are ways of doing things at certain times that keep you within this caution taped area, so that if you adhere to them you know you won’t crash. The stability and security this gives you is why routines are so important for ME/CFS patients. Your whole day should follow a routine as much as possible. For a mild patient, a routine might be how far you can walk or for how long, how long you can remain standing, how out of breath you can get before you need to stop and take a breath, etc. For a moderate patient, your routine might be things like what you cook and how, how many and which chores you do per day, how much you do in addition to an outing like going to the grocery store, etc. For a severe patient, your routine will be much more strict. You will have to do specific activities in specific ways at specific times and not do more or stray from the way you do them unless you are forced to.

If you don’t create a routine, you are constantly being active until you hit your limit and crash. A routine may feel restrictive, limiting and un-spontaneous - and it is. But you will soon learn that it is better to give up spontaneity to be able to engage in more activities freely without getting worse and losing your ability to do things you once could. This in itself is a kind of freedom. It’s not the same freedom of choice that healthy people experience, but it is freedom from the consequences this illness imposes on you, which there is no getting away from. There is great peace in following a routine.

Another way to avoid crashing takes more practice, time being sick, getting to know your body, how it reacts to stimulus, and what happens to your body when you crash. You can learn to sense your energy limits and stop what you are doing if you sense you are going to crash or don’t even do something at all when you sense that it will make you crash.

I do this by pre visualizing every single thing I do (except for mundane things I do unconsciously and know won’t cause a crash, for example, at my current state of health scratching an itch, though when I was more severe there were times this took pre visualizing as well). I visualize performing every action before doing it and it only takes a fraction of a second for me at this point. When I imagine myself doing something in my mind, I get a stress reaction if it is something that will make me crash. I get a feeling in my mind that is sort of light-headed, weak and foggy. There is uncertainty about performing the action. This feeling tells me it will make me crash so I don’t do it. If it’s something I am capable of doing without crashing, the feeling I get when I pre visualize it is one of empowerment and a mild adrenaline rush.

Start your journey with ME/CFS by creating yellow caution tape boundaries in your life. Once this feels stable and you have created a routine around it, practice pre visualizing. I have a strong imagination so it has always been easy for me, but you all can learn to do it. Begin with things you know will make you crash. Pre visualize the activity and try to pick up on how it will feel and affect your body. Then try pre visualizing something you know you are capable of doing and try to feel the difference. You can learn how your body will react to activities this way. Then try something you are slightly uncertain about. It might take you 5 minutes at first to pre visualize the activity and pick up a feeling from it. That’s ok, in time it will become automatic - part of the way you think and move. You will become an ME/CFS Jedi and be able to feel what will make you crash in the world around you and avoid it. You will love the control and peace this brings you.

This is how we fight back against the ME/CFS monster and put it back in its cage where it belongs.


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