Pacing When You’re Too Sick to be Normal and Too Well to be Disabled

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Last Updated on February 8, 2023 by melissanreynolds

The problem of pacing when you’re too sick to be normal and too well to be disabled.

I call this “passing”. I pass for well, despite enormous daily limitations.

pacing when you're chronically ill

There is also a prevailing attitude to fibromyalgia that we ought to “push through” and get on with it. Even amongst people with fibromyalgia.

And I believe that attitude is what made me worse.

In addition to fibromyalgia and chronic fatigue syndrome, I was burnt out.

It’s taken 10 years to clear through the burn out and figure out what are long term symptoms and what was short term. Not to mention the four pregnancies!

Now I face the problem of knowing that pacing is an internationally accepted treatment for chronic fatigue syndrome. But struggle to be able to reduce my responsibilities enough to honour my personal energy envelope.

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So what is pacing?

It is living within our energy means.

A broad concept that encompasses the macro level – how many hours we work or are active, how long we spend out of bed each day and how much movement we can do.

And the micro level – our activity to rest ratios. Out heartrate levels.

These are not easy to figure out.

Few of us are starting from a blank slate.

Many of the people in my groups are people with well established responsibilities before diagnosis and they are not sick enough for disability or to be bedbound.

I had to work to a certain point before I could earn enough per hour to reduce the number of hours I did. Even when I could reduce enough, it wasn’t inline with my energy envelope.

We just don’t know how to do this and many of our health care professionals don’t either.

It becomes a question of what CAN we do.

In my pacing trainings, freely available on my site, I take you through the key questions to ask yourself.

pacing with chronic illness

Micro Level Pacing and Heartrate

At the most micro level, a place I have come to is monitoring my heartrate.

Some resources suggest using the regular maximum heartrate calculation and then taking 50-60% of that.

Ie (220-age)×.6 (or .5 for those more unwell)

For me, that’s 110. But in 2022 I’d been working up to 120. I could comfortably take a walk, or do life, up to 120 RPM. Without immediate symptoms.

After covid at Christmas, I was back to 90. Which is rather difficult to remain under as a person prone to moving fast and having four children to keep up with.

So I go on with the day and try to keep my heartrate below my current threshold.

It means sitting down more often. Taking things more slowly.

Which is hard. And frustrating. But it does make a difference.

paced planning journals

I’m a big fan of paced productivity, I’ve created several journals to help you manage your energy and your to-dos. My Paced Planning Journal, My Foggy Brain To Dos, Annual Health Tracker Journal and My Daily Health Log. You can check those out here.

The Boom Bust Cycle and Avoiding it

I believe the key to managing beyond the day to day of life is learning to manage the day to day of life better. To leave enough ability behind for when a little extra is required. To live in the positive rather than a deficit.

My mission, this year, is to steward the energy and ability I do have better. To take the easiest path where possible. To end the day with a little left in the tank. Learn what to do less and what to do more.

In doing so I might pull out of the boom-bust cycle and the cortisol addiction of the overachiever.

If I can manage my energy in the banal, I can manage it when I’m having fun. As hard as that is.

This will be the key. When to stop and rest. Ensure I’ve eaten and had water. Keep the nervous system calm. No more enduring until I can’t.

The context

It’s important to remember the context of this, I know my macro levels. I am in bed by 9.30pm. And take my yoga nidra guided meditation rest after lunch. I take low dose naltrexone, quetiapine, magnesium, stretch, do deep breathing, try to reduce stress and so much more.

Nothing in isolation. This is a multi system disease that requires a whole of life approach. Pacing is simply one part.

But I offer the heartrate method as one way to introduce some pacing into your current responsibilities.

Have you tried it? Will you? Please do join us and share your journey in the Melissa vs FMS/CFS Facebook group.

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