A journey to sustainable recovery from ME/CFS
Finding your baseline

Written by:

Matt

·

Reading time: 

minutes

The aim of pacing is to stay within our energy envelope to give our body a chance to heal.

Once we have an idea of how many points each activity takes, the next step is finding our baseline. That is the level of energy usage that is stable and sustainable for you at the moment.

By keeping within our baseline, we avoid wasting unnecessary energy through Post Exertion Malaise (PEM) and can build our reserves instead. We are aiming to find the approximate amount of energy we have daily, and then save 10-20% of it, which our body uses to heal.

To find your baseline, start by just recording your energy points usage, without trying to influence it. If you do that whilst also tracking your energy levels, after a few weeks or months you will have some useful data on how your energy usage affects your energy levels.

This data gives us a clearer picture of what’s happening for us at the moment. Do you have a consistent daily energy spend or are some days quite different? If you have crashes, are there any correlations with energy usage in the days beforehand?

If you are in a cycle of significant peaks and troughs, with regular crashes, then it’s very likely that you are spending more energy than your baseline, which is triggering PEM.

If that’s happening, your baseline is lower than your current energy usage.

Your baseline is the daily points usage that is stable and doesn’t cause crashing. This isn’t an exact science and there will be natural variation in our energy levels regardless of what we do, but you can tell that you are at or under your baseline energy usage if you aren’t having regular crashes and your energy levels are broadly stable, even if they are very low.

Once we have a baseline, we want to stay within that energy points spend for a while, likely many weeks or months, until we stabilise and start to see some small improvements in our overall energy levels.

If you’re not sure, try testing out a baseline number of points for a few weeks, and see what effect that has on your energy levels.

I started out on what felt like quite a strict limit of 8 points, which eventually became my baseline. After a few months, I was able to expand this to 10 points, and later to 12.

By starting low, you aim to stabilise and then build gradually from there. This gets us out of the PEM energy debt cycle, which is very wasteful of our limited energy.

Each expansion should be done gradually and tested over a reasonable amount of time against the impact on your energy levels. If your overall trend is positive, that’s great; if not, your baseline hasn’t reached that high yet and you need to adjust your energy usage accordingly.

Challenges and tips

One of the biggest blockers to learning and staying within our limits is acceptance of the reality of our situation. Your baseline is almost certainly lower than you would like it to be, and not having the capabilities we used to is deeply upsetting.

I try to let myself feel that pain, whilst also praising myself and recognising that the work you’re doing now is a huge gift to your future self.

It can be temping to pretend you used less points than you did, especially if it means you don’t have points left to do activities later in the day. If this happens, it’s better to be honest about the overspend than to pretend you used less than you did.

Having such a limited number of points is frustrating and it’s natural to push against it, so be kind to yourself about that. It can also be useful to see what the impact is if you do go over your limit occasionally. Being honest with ourself means we have accurate data that we can use to understand what’s really happening for us. This lets us make informed choices with a better understanding of their impact.

I find it helpful to divide the day into sections - morning, afternoon and evening - and allocate a set number of points per section per day. That helps to spread my energy usage out over the day, and helps prevent me from spending all my points too quickly.

I’ve also found it helpful to write points in ahead of time at the start of the day for activities I know I want to do later, such as playing a game or chatting to a friend. That gives you something to look forward to, makes it easier to track your daily total and also helps you feel relaxed when you do get to use the points, as it feels like you’ve already earned them.

Physical, mental, social and emotional activities all impact us in different ways, so it’s helpful to vary the type of energy usage throughout the day and not do multiple of the same type in a row.

Doing limited activity is extremely challenging and takes a huge amount of patience. Finding ways to spend time without using energy can help, such as mindfulness, gratitude and enjoying anticipation.

By staying inside our baseline for a good period of time and saving that little bit of energy each day, we build our energy reserves and start healing. By watching our overall trend for signs of recovery, we can then gradually expand our baseline over time as we heal.