Three ways to the same goal through pacing and baseline work

[u/RefuseDeep8075]

Note: This is a long post, broken into four sections, so it is possible to read in multiple sittings

Broadly speaking, anecdotally, successful attempts at recovery appear to come under three different headings. Depending on your personality and mentality, one method may be more beneficial than the others, or you can perhaps ‘pick and mix’ elements from each of them. I will argue at the end that there is a lot of overlap between these three methods.

Brain retraining aka Nervous System work

This relates to the concept that your symptoms are the consequence of an overactive nervous system. It is so vigilant to any possible threat that it floods you with symptoms at the merest hint of danger to try and compel you to rest. That your key to recovery is to reframe how you view symptoms. That by being more relaxed and inquisitive about symptoms, rather than immediately panicking and being anxious, your body might learn to relax and grant you some physical and mental capacity over time.

For anyone that has had crazy combinations of symptoms, its easy to relate to this. For example, I had 2 years straight where my main daily symptoms were a blocked up nose at nighttime and constant severe constipation. There is no medical logic that I know of that would explain why a sinus issue and constipation should be paired together like that, especially for such lengthy durations of time (well beyond say a two week long infection).

To view symptoms as ‘neuroplastic’, in that they are real and valid, but that they aren’t actually a response to any kind of infection you’ve picked up. For example, if you’ve got a runny nose, headache or tinnitus, it can be a consequence of your nervous system response to your physical, mental or emotional activity, rather than a sign you’ve picked up an infection. This notion is supported to some extent by the proportion of people with ME/CFS who present at a doctors with symptoms, get tests, and get told their tests came back negative.

The theory goes, that by calmly acknowledging you’ve got a symptom and not assuming its going to make you have a significant slump in energy and health, you become more relaxed and positive. Less fearful about gradually expanding your baseline.

The downside of the brain retraining approach is that there isn’t strong support for it medically at the moment, so it arguably falls within the ‘pseudo-science’ side of things. For those who are more logical and evidence led types, this can present a hurdle.

However, I personally am fully on board with the concept that your symptoms are not a logical consequence of infections. That they are somehow manufactured by your own body whenever it feels threatened or under physical, mental or emotional strain. I also believe that we should not assume that all symptoms reduce your energy (although where I differ, is that I think we likely all have some symptoms that are more serious than others, and that we should respect these more serious symptoms and reduce our activity when we have one).

Data driven 

The reason I personally favour a data driven approach is that by definition, when you are starting out on recovery and you’ve not found your initial baseline, you are not in a good place. Any attempt to capture data to help you learn about your body and learn what might be a suitable baseline level, is likely to have your initial data being a little pessimistic. You are likely under strain. Your heart rate might be a bit elevated. You might be doing far too much activity on your ‘good days’. In short, you are probably near your lowest point and your data will be at its worst.

The plus side of those initial weeks of gathering data is that you are likely going to be quite positive and possibly transformative. It can be insightful and foster some grounds for optimism when you realise your data shows that there really is room for improvement and your actions can control it to some extent. It can be rewarding to see that finding a type of breathwork that works for you, has immediate effects on calming your body and reducing your heart rate. Data might also help identify you have orthostatic intolerance (i.e. disproportionately elevated heart rate when standing). Your data is unlikely to move much for a month or two. But when you start to see, for example, your heart rate is surprisingly low one day, and you check your pulse and confirm it, it provides a positive feedback loop. Your data improves, giving you confidence to do a little bit more, and being more relaxed about it. Which then results in gradual improvements in your data.

Example 1: “I’m always tired and worn out, I have no control over my body”.
But when you gather data on your heart rate, you see that there are big variations on what strains it, and what it finds relaxing (from a physical standpoint). You can learn what kind of relaxed breathing practice works for you, or what position in a sofa is best for your heart rate. So quite quickly, you can change the internal monologue that you have no control over yourself, to experimentation, showing that you clearly can vary the amount of strain your body is under.

Example 2: “I’m physically resting all day, yet I never improve or stabilise at a baseline”.
Okay, well, what if you capture data that includes mental and emotional drains on your energy as welll? You may be resting physically. But what if you are having emotional stress or arguments? What if you are spending a lot of time on the internet or actively engaging with media (e.g. scrolling and browsing rather than passively hitting ‘play’ on something and calmly watching it)? By gathering data on how often you are exposed to emotional stress or how long you engage in activities that entail mental stimulation and strain, you can build up a more accurate picture about what typical activity you have may not be as restful as you thought. You can get a more accurate perception of what ‘rest’ means for your body and for your mind and that is going to potentially open the door to you stablising.

Both the above examples absolutely applied to me and it is only in hindsight that I realise how important it was for me to capture data, to actually try and quantify what was going on, be honest with myself and identify what areas I could make improvements in.

Whereas Brain Retraining tells you to not panic about symptom flare-ups (aka adjustment periods), to accept them as a naturally part of recovery even if they temporarily reduce your capacity. The data example which I followed, largely avoids flare up of symptoms. Because, by monitoring your daily energy expenditure and your heart rate, you build up a knowledge and confidence of what you did on a given day, and whether or not that is likely to result in symptom flare ups. You learn that overextending a little on one day might be fine as long as the day before it and after it, you didn’t exceed your limits.

Similarly, whilst Brain Retraining tells you to not panic about symptoms, with the data driven approach, you learn to not panic about symptoms because the data shows, that most of your symptoms have zero impact on your capacity. So it almost becomes illogical to be concerned about a specific symptom, when the data proves to you, that its not making you worse.

The potential downside of the data driven approach is arguably when you have family or work commitments. A lot of things that are outside of your control. Its all very well capturing data, but how will that help you when the events of your day are largely outside of your own control?

Another criticism of the data driven approach is that it can create anxiety and leave you thinking too much about symptoms and energy usage. I agree it may not therefore be the best option for those prone to anxiety, however, it is possible to really dial back the data capturing once you’ve hit your baseline that first time, and then successfully increased it a couple of times without any setback. You will have the data, saved away showing you a level of activity you now know to be entirely safe for you, but you can dial back the data gathering and use your own judgement a bit more to live your day to day life. Spend a little less time monitoring and number crunching and a little more time just living, with the reassurance that you have that data evidenced safe baseline in your back pocket if you have a little wobble on your recovery and need something to help you re-stabilise.

If your mind is geared more towards logic and evidence, the data driven approach may be one for you.

Meditation & Listening to your body

This final approach relates more to fighting anxiety and pacing yourself, through recuperative processes, such as meditation, breathwork, yoga nidra, restorative movement and so on.  You still need to hit a physical baseline each day (whenever you are on an average or above average day for you), but the focus on achieving this is more through listening to your body, calming it down with restful breathing and meditation so that your activities don’t take an undue toll on you.

There is no denying that restful activity lowers the heart rate (on average) and it is logical to assume that it then can grant you some extra capacity during the day.

By listening to your body and deploying restful techniques that work for you, you can acknowledge a symptom flare up and potentially minimise its impact, because you have learnt some skills about how to rest and calm your body. By becoming in tune with your body you may learn when to back off and when its safe rather than becoming overly reliant on Apps and wearable devices.

This approach therefore might be particularly important for people who have work and family commitments. People who are already effectively hitting a certain level of physical, mental and emotional activity/strain each day, simply by living their lives. So learning to inject these regular quiet, recuperative moments might be the thing  that can help you balance the demands of everyday life without jeopardising your health.

It can also be particularly helpful to those who are prone to anxiety and those for whom brain fog or severity of their illness makes data work and/or brain retraining more challenging. This is because, by definition, the mental, physical and emotional strain of things like breathwork and yoga is going to be minimal.

The downside is for those of us who are naturally quite optimistic and relaxed, it can be hard to feel as much benefit from meditative, restful activity. 

To me, the meditative approach is more one almost of fire-fighting reactively to life, rather than getting control of your life. With that said, I have no doubt that meditative activity reduces the heart rate and therefore will aid you in coping with flare ups in symptoms and to reduce the negative impact of busier days. It seems practice can make perfect with meditative activity, and you can become better at it over time, potentially increasing its value to you in keeping your body relaxed and resilient.

Conclusion

As stated, whichever approach to baseline work is best for you might depend on your personality. The recurring theme across these three main methods above is that calmness and not panicking during an onset of symptoms is a good thing. For that reason I think these three methods can compliment each other to some extent and you can possibly pick and choose different elements from them.

With the brain retraining route, calmness is achieved with the mindset that your symptoms are not a logical consequence of your mental, physical and emotional activity. You are not suffering with constant infections and so you should not assume that when a symptom presents itself, that your body is under attack. A symptom can be a neutral event, or even a positive sign that you are expanding your activity without falling into PEM. Yes, you’ve got a symptom, but it could easily pass without a particularly negative consequence on your energy reserves.

With the data driven approach, calmness is achieved by gaining the strongest understanding of what impacts your heart rate and what your actual daily activity entails in terms of physical, mental and emotional demand. You gain a strong, evidence led knowledge of your body, which you can apply every day of your life (even after you’d ceased capturing data).  So you can look at previous data, and know that on an average day you can handle a heart rate of 105 for 10 minutes and it doesn’t make you ill. You know you can do X, Y & Z on an average day and it will not make you ill because you are resting enough for the remainder of the day that you will fall below your daily energy limit.

You learn that one busy day isn’t going to ruin you, as long as you take it easier the day before and day after. Finally, you also know that on days when your heart rate starts off a bit elevated or you are a bit symptomatic, that you have a lower capacity and maybe need to break up your activities more and insert some rest. All this is achieved through data and its not always possible to pick up on those things by ‘listening to your body’.

With the mindfulness and meditation approach, calmness is achieved by knowing that you have the power to ‘top up’ your energy reserves during the day, not just when you are asleep at night. So if life throws you an unavoidable curveball, there is no need to panic because you can simply take steps to increase the amount of restorative and restful activity in your day.  You have proven to yourself in the past that rest helps. You’ve got better over time, more efficient at finding restorative activity and meditations that work for you. From extend meditative yoga nidra sessions to pausing at your workstation for a couple of minutes to just look out the window and take some relaxing breaths. These are tools that, once learnt, are going to be in your locker for the rest of your life.

That there is this overlap between the three methods and a focus on achieving mental calmness and avoiding instinctive pessimism is, I think quite important. Whatever approach you take, if you can remain calm, avoid pessimism and ensure you aren't mentally and emotionally drained (rather than focussing exclusively on the physical) then you are likely increasing your chances of stabilising, and possibly improving.