The Catch-22 of Pacing for Chronic Fatigue Syndrome

Many of us with chronic illnesses are advised to pace. It’s incredibly sensible advice — we plan our day, we measure out our energy, and do what we feel is best for us. We are mindful not to push through, mindful not to exhaust ourselves, and in this way we give ourselves a crack at a life that has small wins peppered throughout the day.

But this advice starts to wobble when we bring in neural retraining. There is a downside to pacing, and I’ve only just discovered it.

Let me explain.

I’ve had chronic fatigue syndrome now for over 15 years. I’ve tried so many thing to help me improve that I’ve lost count.

But a glimmer of hope has surfaced, in the guise of several health care practitioners of various disciplines, now suggesting the cell defense response could be a major player in this illness. Due to trauma, or traumas (please note this is not simply childhood trauma — this could be car crashes, mold exposure, chemical exposure — basically anything that threatens the body), we are biologically stuck in flight or flight

For chronic fatigue syndrome, we are stuck in the freeze response.

Which means I’ve been stuck in the freeze response for 15 years. My body has been biologically operating in freeze for 15 years, which has totally messed it up.

I mean, it would, wouldn’t it?

As a result of being scared for my life (which is what fight or flight is all about) I have behaved in certain ways and created deep neural pathways of thoughts and behaviors all around not getting worse, around keeping me safe.

Quite rightly I’ve been protecting myself.

Which is where the pacing comes in and my recent discovery.

I’ve started to include neural retraining into my daily life around my illness. Neural retraining for me is retraining my entire biochemistry to know that I’m safe and that’s it’s OK for me to heal.

One exercise I now do involves walking a very short distance, sandwiched in between neural retraining.

It has been both fascinating and horrifying uncovering my thoughts around very small amounts of exercise.

They were: I’m not good enough, I can’t, I’m not going to do this well enough, what if I collapse, what if I can’t make it, what if I’m not fast enough?

This was before I had even gotten out of the door.

I was stunned as I sat there, feeling my legs tighten, the fibro pain creep into my thighs and the cramping in my calves.

This was a case of my mind telling me it was not safe, and my body then following suit.

(Please note: I am not suggesting anyone do the graded exercise therapy [GET] exercises. This neural retraining has been specifically designed for me and my tolerances. I too have the blood results from my ATP tests, and mine works at just around 50% on a good day. CFS is biological. I am in fight or flight, and my body is doing its damndest to protect me.)

However, if I am going to get out of being stuck in fight or flight, I have to start somewhere. I have to start with a few of my symptoms, and a very small walk was a good place to start.

With neural retraining, the idea is to identify the thought patterns and behaviors that go alongside the symptoms, to heal any trauma/inner child work associated with them, and then program in new memories — past and future — to literally fool my brain into thinking I am safe.

And I did it. It took me a week.

A week of bringing up pretty horrid feelings, thoughts, past traumas, doing the work, creating new positive memories (for me this always involves walking a dog of some kind), then new memories — again, walking with my dog.

I managed to create a new expectation, so now when I walk out the door for my very small walk, I’m excited to be enjoying the fresh air. I’m excited to notice nature, wildlife, the weather.

All very simple, all very small, but now, when I get ready, I’m happy, I know I can do it, I look forward to it, and it is invigorating.

The next step is to very slowly increase how far I’m walking. Which brings me back to the pacing.

I still have that fear lingering in the back of my mind that I will crash — yet, I need to be in the upper limit of my comfort zone if I am to expand it. I have to change my thoughts around pacing. I have to see it as a safeguard, but I also have to be aware that it can no longer be a crutch. It can no longer be the thing that prevents me from getting worse; somehow I need to bring in the concept that it will also be part of the tool box that gets me better.

The master plan is to be so relaxed when going out for a walk, that all fear has gone, all the negative chatter is no longer associated with it, and I am no longer in a state of extreme alertness.

I’m not in fight or flight and the cell danger responses is no longer switched on.

And I need to let go of the pacing here — of the managing, I need to allow my body to feel safe enough that I can heal.

I’ve a long way to go, as this is simply one example, but so far the results have been promising.