Tag: energy-limiting illness

Please honor your own energy envelope as you read. Whether a sentence… a paragraph… or even a glance at the headings, whatever feels right for you in this moment is perfect. Compassion. 🙏

When we speak of “exercise,” what do we really mean?

For most of the world, the word conjures images of jogging paths, yoga mats, or perhaps the thrill of surfing. But for people living with severe ME/CFS, Long COVID, or energy-limiting illnesses, those images feel alien—sometimes even harmful.

A recent article critiquing Graded Exercise Therapy (GET) made some valid points about the dangers of pushing beyond one’s limits. But it included an example of going surfing as a form of joy-based movement. For many of us who can’t even sit up for long, that kind of suggestion doesn’t just feel out of touch—it feels quietly devastating.

Because for us, “exercise” might mean:

• Sitting up in bed for 60 seconds.
• Taking a shower.
• Getting dressed.
• Writing a message to share with friends.
• Fill in the blank: _______

These are our mountains.
These are our triumphs.
And they deserve to be seen and celebrated.

Why Surfing Isn’t a Helpful Example

1. Most patients are not high-functioning.
Many of us are bedbound, housebound, or dependent on wheelchairs. To suggest activities like surfing may not feel inspiring—it may feel shaming.

2. PEM doesn’t care about your mindset.
A shower can mean days in the dark. Making tea can require a week of recovery. GET fails not because we aren’t trying—but because our cells can’t keep up.

3. Joy comes from adaptation, not performance.
Recovery may—or may not—be possible. But living meaningfully within this illness is. A breath of fresh air, a ray of light through the curtain—these are sacred moments.

A More Gentle Framework: What Is Possible?

1. “Bedercise”: Movement Within the Envelope

• Gentle arm lifts (or just muscle engagement)
• Ankle rolls for circulation
• Breathwork as internal movement
• Stretching fingers, wiggling toes

Each of these is valid. Each of these is enough.

2. Celebrating Non-Physical Victories

• Listening to a few minutes of an audiobook
• Looking out the window
• Enjoying the scent of tea or essential oil
• Smiling, even once

3. The 50% Rule
If you think you can do something—do half.
If you could clean the counter, just rinse a spoon.
This helps avoid crashes and still creates a feeling of self-direction.

4. Redefining Progress
Progress may mean staying stable.
It may mean one less crash this month.
Or sitting up for 30 seconds longer.
These are wins, even when invisible.

A Call for More Inclusive Stories

If we want real awareness, we must include severe ME/CFS patients—not just those well enough to surf or work part-time.

Your struggle matters.
Your body is not broken—it is navigating a broken system.
Your stillness is not failure.
It is wisdom in motion.

Rest Is a Practice—A Sacred One

For those with ME/CFS and other energy-limiting conditions, rest is not absence. It is presence. It is the heart of the path.

In Dzogchen, as taught by Namkhai Norbu, rest is a return to the natural state—effortless, luminous, whole. In Ramana Maharshi’s Self-Inquiry, resting in the question “Who am I?” leads us not into striving, but into the stillness beneath all identity. In Samatha meditation, taught by the Buddha, rest is calm abiding—shamatha—the ability to remain at ease without grasping.

When you lie in stillness,
when you breathe quietly through exhaustion,
when you choose not to push—

You are exercising.

You are aligning with ancient lineages that saw rest not as a failure of effort,
but as the purest exercise of wisdom.

So if all you did today was rest,
you did something holy.

🙏🕊🙏

For those interested, here is the article that inspired my post. But, Surfing! Haha! 😆 Surfing the internet, maybe. The author clearly doesn’t consider people living with moderate or severe ME/CFS in his/her writing of their article. 🤔

SOURCE LINK: Why Graded Exercise Fails for PEM (And What Actually Works)