CFS Book
by someone recovered from CFS,
for people with Chronic Fatigue Syndrome

Chapter 3 from the CFS Book, 'Living Lightly':
Loss of freedoms

What's it like living with CFS?
from the CFS Book, Living Lightly

There is a terrible sense of loss of freedoms with Chronic Fatigue Syndrome. Things that you previously could do, you now can’t. All those joyful hours planning new ventures or following pleasurable pursuits: curtailed. And now it is just tiring to think about it. One feels a mix of anger, frustration and grief. At its worst, the world narrows around you to the bed you’re occupying and the four walls around you.

It’s a major excursion to visit the toilet and navigate back to lie prone in bed, while the world spins around. The yawning gap of the stairwell as I pass seemed ready to swallow me whole if I should topple, so I tried not to look. The longer I was vertical, the more likely I was to be hit with waves of nausea and dizziness before I could make it back to the bed. So the bathroom was a bit of a hit-and-run affair to get back to lying down as quickly as possible. The length of time to return to equilibrium after this mammoth effort well exceeded the action.

Chronic Fatigue Syndrome diary extract,
from the CFS Book, Living Lightly

Here is an extract from my diary at my lowest ebb:

I am trying to think through a fog. My head is too hot, actually hot to touch. It’s as if my brain is burning up. Burnt out?? Done too much again it seems. Such a fine line to tread. I wish I could get it right. Nearly there a lot of the time for I can see progress, if I look back these months.

But still today, time is passing in the oddest manner for I feel dislocated and not quite here. Choosing which clothes to put on today is a huge effort of focus. My usual order of dressing, out of the window. So I just grab the first thing my hand falls on until this clears.

I have two things to attend to today..... feels like a mountain, or rather two, that I have to traverse. Scramble up them or call off?? I am seriously contemplating calling off the first – but there I go again disappointing and letting others down, again! So very hard.

My brain can’t think what to do. Another sign of the fatigue. Thoughts won’t come easily to any decision. It’s like living in a dream, only it’s a waking dream where I can’t wake up to normal consciousness.

So I hit the shower. The one thing I know which often works. Cool, wet hair cools my head and reduces the heat in my brain. But today this isn’t working. Still it’s early. It’s only 11.30am. I tell myself, I am usually OK by mid-afternoon. Sit and wait. Patience, Jenny. You know it passes.’

So I learn to lie still and reflect on the past. What a colourful life to have led! So many wonderful places, sights, smells and people to share your journey with, which Fortune grants the good health to enjoy. The world shines when you are healthy, with a shining spirit and a zest for life.

Lying prone, there is still zest but the body doesn’t feel fit to jump and do as it was bid. In fact, even pondering my past escapades, engages my beating heart, endorphins and adrenalin kick in and it tires my body to think! The body responds to each thought as if it were occurring in the present moment: a fear response to fight or flight or a joyful response to action. Planning an action in your head, your body responds as if it was actually doing it, instead of merely thinking about it.

So you learn to lie quiet and still your thoughts; to bring them to rest in the present moment. You learn that the longer you can lie still and quiet, the more recharged your energy levels will be.

Healing Meditation One: mindfulness,
from the CFS Book, Living Lightly

So bring your thoughts to rest on any ease of comfort in the body (even with a body in pain, there will be ease or comfort somewhere). What you focus on increases, so focus on ease or pleasure not the dis-ease.

Breathe peace into your beating heart, slow the breath.

Focus on the comfort of clean, smooth bedding.

Focus on the quiet around you. Noises and voices in the street may take your mind away from calm and you may start to imagine the scene outside your window.

So you learn to disengage and let the sounds filter through and away without attaching thought or emotion, without engaging with the sound.

And the peace increases.

You can hear the blood in your own head and the intensity of the beat of your heart, perhaps strong pulsing at the solar plexus which may even be visible through clothing. Notice how your body feels with detachment. Practise detachment.

So you learn to think Peace. Think Ease.

Breathe in peace through your fingertips on the solar plexus. Then you learn to go beyond the physical body to the energy body beneath and beyond. You may notice the pulsing or oscillating energy body as palpably strong.

You learn that ‘smiling’ internally deepens and lengthens the oscillations or pulses, which transfers through into the physical body.

You learn that dis-ease, for I believe Chronic Fatigue Syndrome is an energetic dis-ease, starts first of all in the energetic body, which maps itself overtime into the physical body.

Ask yourself how far back you knew something wasn’t right, deep inside yourself, but you trundled on regardless? It’s plain to me that the dis-ease within me started a long time ago, probably ten years before I fell ill with CFS but I wasn’t listening to the messages then.

Whatever you give attention to increases, so let’s come back to the peace with a meditation on the inner pulsing of your life force. Let’s create long, pure, fine emanations of light to ease the pulse within your physical frame. It’s like learning to live to the beat of a different drum. Your soul drum, not the harsh beat of the world. Your life and healing depend on turning your life around at this pivotal point. And you can learn to bring your own finely tuned life force through into this physical world through your physical body.

This is the experience that you are participating in. How well you engage with your own healing process is determining your minute by minute experience.

I suggest that you try this healing meditation once a day and bring your focus to being and feeling well, as your soul purpose at this time.

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Healing Meditation Two: the inner pulsing of your life force
from the CFS Book, Living Lightly

Lie on your back and rest.

Place your hands on your abdomen. Bring your attention to breathing in and out.

Ask your angels and guardians to help bring you healing and bring you to a state of calm and grace.

Focus on the fine-ness, the joy of who you are behind your physical body.

Smile internally. The smile radiates into your abdomen and down your legs. Ride the waves of this subtle peace.

Smile internally. The smile radiates across your chest, down your arms and back into your belly through your hands. Ride the deepening waves of peace.

Smile internally inside your skull. Light of subtle pure form radiates within your head, across your face, down your neck, inside your ears and filling your mouth and down into your shining body.

Lie peacefully smiling. Bask in the waves of healing grace.

Notice any small ‘smiles’ breaking out over your body, in your wrists, throat, eyes, ears.

Notice your heart opening.

Think PEACE, PEACE, PEACE as you ride these waves.

Think ALL WILL BE WELL. ALL IS WELL.

Focus on smiles and the wellness within you.

Be thankful for this opportunity to rest.

Accept all help graciously and with gratitude.

‘Smile’ a cloak of peace and protection from the harshness of the world around your shoulders, covering your head and wrapping lovingly around your feet.

Try to keep this peaceful state of grace as you awake and engage with the world once more.

******