a grey stone carving of a pigeon-like birdThe Stone Bird
This website tries to share some of the experience of living with Very Severe ME, both from a carer's perspective and from the perspective of having it; it also sets out to convey some insights that we have gained , from what has been a predominantly spiritual path through suffering.

Our greatest learning perhaps has been this :

When you come to a point in your life of unutterable suffering, where there is no apparent way out, there God calls to you that He is here and He is with you. All you have to do is seek and you will find. Knock and the door will be open to you.

For my self, I have learned that the only way to endure such unendurable tormenting , beyond imagining, sheer pain, is, strangely enough , to go in to it, not resist it and to become incredibly still. This then is where I have come to find God unexpectedly close and present, even in the darkest place of my mind, where I have somehow dissociated and free floated within the pain. He too is truly there and has saved me. He has not necessarily done anything obvious. No words have been spoken, though God does speak to me and I have heard Him many times. In these profound places of extreme torment I have not heard His Voice , only sensed Him being with me. But only when I have gone right into the pain and not resisted it when there has been no resistance for the pain to react against.

When I am in the chaos of unutterable indescribable agony I cannot necessarily feel God at all. The power of the physical experience is huge, vast and all encompassing. I cannot bear the moment I am in. There is no other moment than this one and it seems to spread out to all eternity in an eternal moment of excruciating torture. I don't really have the words to describe the experience.

It is more than torment, more than torture, more than indescribable, more than intolerable, more than unacceptable, more than completely unbearable. It is screamingly hostile and negating. It is barbaric in its cruelty. It is exquisitely diminishing. It is almost completely incomprehensible in its agony it is so vast, so punishing, so pure, so bleak, so empty of life and full of sensations that is beyond endurance.

It is no wonder that Jesus called out to the Father and asked why had he abandoned him. Such is the nature of that place that all awareness can be blocked except for the pain itself that pierces every cell and every space between cells, every existing fibre of being is caught up in the torturing pain. God, who loves us still and holds us all, is helpless to help us in that place in the sense that He cannot reach us, even though he reaches out to us. He weeps for us. He weeps with us, yet the physicality of the pain is immense and unquenchable. There is no other feeling here. All focus must be on coping, on bearing the unbearable, on remaining, on the pain itself, for there is no place that is not pain. There is no place that is not agony , there is no place that is not on fire with the violence of hurt, within the physicality of the body. The pain screams non existence at you. The pain will consume you. It is not easy to feel spirit in this place. Your mind is huge , it can cry out, but whether it can hear or receive a reply is unlikely. The pain alone is all consuming. You just want it to stop. You do not know when it will kill you, for surely you cannot remain existing in such intense violation of life.

a photo of waves on the shore Reality
Living with ME you experience the absolute reality of the physical suffering, so often denied, downplayed, side tracked and over- looked.

It is this absolute truth which provides the strength to keep speaking up, to keep pushing for proper medical services that meet need, to keep showing what severe ME is really like when you are incapacitated by daily , neurological symptoms , that most people cannot begin to imagine the experience of.

It shows you who knows what is real, what is true, what is right. It gives you an absolute clarity about all that is wrong, all that is misinterpreted and misrepresented.

It gives you the absolute certainty you need to keep on going against the tide.

a drawing of a dove Understanding
It is so important to have understanding of our situation in order to take stock and make effective situations.

Without understanding there is little clarity and often confusion or stuckness.

Understanding is the key to living, the key to choice and right decision. Without it we flounder, whether it concerns our own situation or another's behaviour, whether it concerns information we need or knowledge we do not yet have.

Understanding leads to awareness and awareness leads to possibility, new vision, hope and a way forward.

Understanding can bring change and when that understanding is filled with the awesome energy of love and prayer, spirit and power, miracles can happen and new ways can be discerned.

a photo of a cross Temptation
There is a temptation, when life is a struggle, to get bogged down in resentment, blame, oppression, negativity.

There is a temptation to give up fighting, to give up speaking out, to feel so ill and exhausted, so stressed and preoccupied with living, that we lose sight of hope, light, vision, truth, justice.

It is a hard path : to not give into the temptation to blame others for our circumstances, to feel victims of persecution, to feel helpless and hopeless, to feel diminished.

Prayer leads us back to the presence of goodness and a greater force for good in the world. Prayer strengthens us and brings the whole universe to our aid it opens up new possibilities where none seemed possible.

a photo of a rainbow Rejoicing
We rejoice today that the Countess of Mar has spoken up so powerfully for those who have no voice, for those who are so isolated and who can barely get through each day.

We rejoice especially when we hear the truth of ME being represented sadly it is a rare event and to be rejoiced over.

We find as our lives become smaller and smaller so the things we rejoice for become clearer and more visible ,the smallest things, insignificant to most , can bless our day and make the difference between happiness and despair.

a photo of a candle flame Transformation
Perhaps Christ's greatest agony was the total experience of abandonment on the Cross.

So too, it is ours.

Almost two decades of deep suffering have led us to this place - where there is only pain , the agony of helplessness , never-ceasing torment.

Only those who suffer deeply know this place.

Is transformation possible then ?

Perhaps it is only by the grace of God that anything good can come from here.

a photo saying Reframe Reframing
You might think that there is no greater example of reframing than the way ME has been reframed to be CFS.

This was done by vested interests and its impact damages the Truth and seriousness of ME. Framing can be used in a variety of ways to see what is true or to limit truth.

Frames are powerful things. How we frame our lives, the stories we tell ourselves and others, the impact we have can be small and narrow, limiting, stuck or huge and vast and open to possibility.

If we focus on the glass half empty it will always appear so no matter how full of potential the other half is.

The frame we put round our reality can so limit us : if we do not see outside our own narrow frame of interest, if we do not see our own power and our own goodness and our own ability to change things and focus on our capacity to love and create.

We don't necessarily see our own goodness and our own wonderment and our own power.

Today then, this moment in fact , is a moment where we can dare to look and see the future with new eyes and new vision , with hope and faith, goodness and love at the centre of our focus. It does not necessarily mean you have to do big things, make sweeping changes, just begin in a small way by seeing the goodness within and without you.

God gives us the strength, the vision, the insight and the power to move forward , reframing life in a context of hope, renewal, blessing, trust, courage.

On Stonebird we affirm : you do not have to do anything to be of beauty and value in the world. Even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters.

a photo of the sea and the word power Power
What is important about Power is to believe in your own Power in any one moment, to bring about change, to break a chain, to set people free, to free your self.

Equally important, in any one moment , is to not give your power away to any ideology, to other people's opinion, to any person or system, or authority.

True Power does not come from status , wealth ,authority . It comes from integrity - and a humble encounter in truth, that has nothing to do with playing games, with puffing up ones ego, with coming from fear.

It has everything to do with love and genuine freedom.

Power is the fruit of Truth, which cuts through hypocrisy, arrogance, self importance, power playing and abuse with a blade of light ,which when wielded wisely brings inner peace , harmony, healing, abundance, justice.

Goodness is at its heart. It lifts, inspires, guides, aids through the Power of Grace.

a photo of the sky, above some rooftops and the word hope God
Without God my life is barren, extreme, bleak and horrendous.

I cannot exist without the truth of God , the energy of love, the brightness of hope to shine in the cracks between moments of tormented agony.

For me hope is a fundamental aspect of living.

It is not some fanciful idea or some achievement yet to manifest, it is the hope in the very essence of being that is utterly radiant, utterly beautiful, utterly whole and complete , brimming with energy that can and will heal the moment, just by coming aware of it and feeling the goodness of it.

Without hope life is grim, desperate, desolate, lacking in vision, lacking in truth, lacking in beauty and there is nothing to console you. It is the antithesis of life and it must be wrong.

Yet it is where so many people live.

Hope binds us to truth, brings comfort and consolation , blesses the whole world. It lifts us into life itself and renews us when everything else fails.

You can place hope in possessions but that is short lived, you can place hope in status, but that whithers away like the grass, you can place hope in achievement - but it is a constantly moving target.

Where can you place hope then?

Stop. Open your arms and look up. Behold the wonder and infinite promise of this moment. That is where hope lies.

a photo Greg holding Linda Good Friday by Linda Crowhurst
The Cross is no stranger at our door. We live every day in pain and immense physical, mental and emotional distress.

We hold onto Love at the centre.

All is stripped away from us by the circumstances and experience of this illness Severe ME. The pain of the Cross is very real. The sacrifice of the one who loves is immense, the carer who loves and stays despite the pain and torment he both sees and feels, is ravaged daily by the storms of the Cross.

The love, the open-heart of the carer for the beloved is a wound that brings forth the greatest compassion and untold wisdom in the world of suffering. It brings clear sight of injustice and calls for the need for Truth and Integrity on the path ahead.

The sufferer too lies pinioned in pain on the Cross with Christ. Each throb of pain is an onslaught and a torture.

Each moment of inability, of incapacitating paralysis, breathlessness, is a moment of shared anguish with the Lord.

Each second of spreading numbness, pushes the sufferer further away from the world and closer to heaven. Each exquisite level of torture played out on the person with Severe ME is a part of the suffering Christ on the Cross. There is no separation from the hurt of the world, for the Lord, the carer, the sufferer, all are bound in agony by their experience and by their love for each other.

God loves us. Of this be certain. God knows all our pain. Of this be certain too.

We are all bound to the Cross in His intimacy of suffering.

Few remain with us.

Few remain, yet all are loved. We hold to the Cross. We cling to each other and spiritually our need is great. Our hearts are all open. For whom can we turn to in such suffering other than to God ?


Even if it feels like He has abandoned us, this not so. We cannot always bear nor understand the level of distress and pain we suffer, yet we can hold fast to the truth.

We can bear our suffering with love at the centre. We can know in all certainty that even if we know not how we will cope yet still we will cope., and more than this, great gifts of goodness, great spiritual blessings, will flow from our steadfastness to love.

And that is all we must focus on. The Heart of Love, feeling our pain, becoming our pain, being all pain. And finally the Heart of Love healing all pain.

We may not feel healed. We may not feel God's presence, even in the darkest depths of suffering, yet truly the Light of the World is with us and He bears all hurt for all time and as we enter too into this mystery with Him, so we are all saved.

For Love, though it appears to fail on the Cross of Good friday will ultimately triumph and leads us always on to the Glory of God, to Light, to Healing, to Hope, to Mercy.

Thus we can say with all certainty, Come Lord Jesus Come. Take my suffering, take my heart and use it for Love's greater purpose. May we save as you save, to be a beacon of light to the world and if by chance our suffering can ease your burden in even the smallest of ways Lord, let it be so. Amen.

a photo of newly germinated seedlings Please click here for all the Daily Lent reflections
" For Yahweh says this to the House of Israel : Seek me and you shall live "
Amos 5
a photo of the setting sun behind trees Ash Wednesday by Linda Crowhurst
" Tobit replied : Can I ever be happy again? I am a blind man. I no longer see the light of heaven; I am sunk in darkness like the dead who see the light no more. I am a man no longer alive : I hear men speak but cannot see them. The angel said : take comfort, before long God will heal you. take comfort"
Tobit 5 : 12-14

Can we ever be happy if we cannot see the light ? The light of God. Cut off from God's light we are limited, our perceptions and knowledge are limited.

We need to see the light in order to see the truth

Happiness comes then from trusting in the light and from following God. God will always bless us and help us if we trust in him.

The angel promises healing. The angel calls for courage in the face of darkness.

perhaps this then is the meaning of the reading. let us never accept a life where god's light does not shine, yet if darkness seems to obscure our view, then is the time for courage. Courage begets hope and hope begets trust. Let us always trust that we will hold steadfastly to trust in God's healing power; in the possibilities we cannot always see.

God will always heal us. God has given us an angel to guide and protect us. God's angel gives us courage to say "Yes. I will. "

Trust in the Lord and I will be healed by the mercy and love of God. Amen.

Let us always seek the light even if it is temporarily obscured. The inner light of God is always there.

a photo of two yellow daffodils Shrove Tuesday by Linda Crowhurst
"This people honours me only with lip service, while their hearts are far from me. The worship they make me is worthless the doctrines they teach are only human regulations."
Mark 1

This reading leads us into the beginning of Lent. It bids us look at our worship. It is a challenge to look with the eyes of Truth and see first of all is there any truth in this message for myself ? It is easy to talk about God, to say His name and to appear to observe ritual and obey the law...

....yet we need to examine our hearts to see if we have really allowed Christ to enter in, whether we have allowed love to take seed and grow in us - whether our worship is congruent and true to the living Light of the world or whether we pay more lip service - whether we are like the Pharisees who want to look good for outer appearance or whether we are living the truth of Christ Jesus with us ?

How close have we allowed Jesus to be ? Have we let Him in - can we bear to let Him and do we dare to take the risk - the risk of Him seeing us and the fear that He will find us wanting,mean, petty, shallow, insincere or weak, inadequate, grieving, lost, angry, hurt ?

Yet if we dare to let Him in. Even if He finds these things hidden within us, yet still He will make His home with us and He will let His light shine on the truth of our loveliness. For that is the truth - at the centre we are lovely, for He has made us so, and His light will shine on all hurt and all untruth until it is vanished and love alone remains.

Then our worship will be true and then we too will shine in the world for Him, for He will be close indeed and nothing will separate us from that Love. Joy indeed. Praise God for the journey of Lent.

Let us dare to look and see the Truth - that we are loved by Him and we are lovely !

a photo of a red poppy. I choose Mercy , by Linda Crowhurst
Today I choose Mercy. Mercy rather than forgiveness....

I cannot in honesty forgive everyone right now for all the hurt and ignorance towards me. Mercy is what I choose.

Mercy above forgiveness. Mercy that heals all, loves all, blesses all, saves all. It is in Mercy that I place my trust : God's Mercy rather than my weak human forgiveness.

I hope eventually to forgive ; yet in the meantime I choose Mercy. I ask that Mercy flows into all my tormentor's lives. I ask that Mercy blesses the unforgiveable acts they perpetuate.

I ask that Mercy flows from The Heart of Love and heals all the wounded, unhealed, hurting parts of me.

I choose Mercy, which for me is greater than forgiveness and encompasses all time and space and heals, far beyond my limited perspective.

I desire to immerse myself in Mercy, hoping it will free me to forgive all.

The Government funds no physical research into ME, instead it slavishly follows the dictates of the Medical insurance Industry , that ME is simply maladaptive thinking. So sufferers are left in agony for decades upon end, with nothing being done to test, treat and cure them. The Benefit System constantly fails ME sufferers, leaving some relying upon food parcels to survive. Not many GPs have a clue. Very few "friends" stay the course. Families can be the most ignorant of all. Neighbours going about their ordinary lives can be a torment beyond words, to the light, sound , smell - sensitive ME sufferer. In every conceiveable way, the life of an ME sufferer is surrounded by hurt and ignorance.

Let us pray for Mercy

a photo of a wallflower. I choose Truth , by Linda Crowhurst
I ask for help to discern the Truth and live in Truth....

I ask for wisdom and knowledge, gifts of the Spirit to help me know the Truth in all aspects of my life :

Truth that is radiant

Truth that is pure

Truth that brings hope

Truth that brings joy

This is what I ask today. That I can see and know the truth of things both of the world and spiritually; between the relative truth of things and His Absolute Truth and the wisdom to discern the difference.

Truth is knowing God. God brings us to a place of clear sight. He helps us to feel the goodness that emanates from Truth. He asks us to live in a more congruent way through the validity of truth. He helps us to speak the truth, to stand up for Truth, even if it makes us uncomfortable. In truth to live without it , is a far more uncomfortable, unpleasant place to be.

I ask to shine the Truth today and to speak out. I ask to flow in all goodness that emanates from this knowledge and to be strengthened by my stand.

To have Very Severe ME is to be bombarded by untruth. There is massive untruth being peddled as truth about ME, including those who deny its reality and minimize the truth of the suffering of those who have it. ME is interpreted wrongly as a psychosocial, mental health issue. In truth ME is a very physical, seriously disabling World Health Organization classified neurological disease that can lead to death. The truth of ME is not widely known.

Let us pray for Truth

a photo of Linda in torment, hands over her ears I choose Reasonableness , by Linda Crowhurst
I choose to be reasonable when I do not feel like being....

I choose to think about the other person's view when I do not feel like it. I choose to practice empathy when all I want is to look after myself.

I choose to see the people who are the events and the circumstances which are irritatingly annoying , tormenting me, in a bigger view and act kindly towards them

When everything is difficult and I feel angry with the world and everyone in it, I choose to see the bigger picture and look with kindness on myself as much as others.

I choose to be reasonable, to not react badly, especially when I really , really want to because I choose to see myself in others, to think about their circumstances, to see my own unreasonableness.

I choose love this day along with reasonableness and hope to find a blessing.

To the person with Very Severe ME, the whole world seems unreasonable. With increased hypersensitivity, the environment and everyone in it, becomes hostile and everything that is ordinary becomes a torment.

Let us pray for Reasonableness.

a pastel drawing by Linda of a Cross with light shining from it I choose Light , by Linda Crowhurst
I choose to look to Light to lead me...

I choose to look to Christ the Light of the World to guide me safely. There seem to be many obstacles on the path I choose : the path of Light, the path of Peace, the path of Hope, the path of Truth.

I trust in God's Light to guide me safely round and through and over every obstacle to the peace that comes my way. I choose to keep my focus on the path of love that Christ leads me on.

In any day I find I turn to Him. I ask the Lord to bless my path ahead, for He alone sees truly the way to go. He alone can keep me safe.

I choose to listen to His guidance. I choose to live in light. Light that illuminates and makes things clear. Light that gives radiance and beauty to my world. Light that shines on all difficult moments and helps me transform them into something good.

Light transfigures me and lifts me up to higher vision where I can see more clearly with eyes of love and not react to my situation from smallness, fear, negativity or torment.

Light leads me to love. Love blesses me with Light and I can hold onto the path of Peace I have chosen, for this and every day becomes one of the Light, the shining Light of Christ with me.

To the person with Very Severe ME, light itself is a torment, causing pain and forcing the person to lie in darkened spaces. Lights have to be dim, sunglasses and masks have to be worn. Sometimes you have to cover your whole head to avoid over-stimulation. Even your eyes can be affected so that you appear to look out from a darkened tunnel.

Let us pray for Light.

a photo of a budding Lupin flower I choose Hope , by Linda Crowhurst
I start the day with Hope...

I banish all fearful thoughts and imaginings. I choose to flow with Hope today.

Hope lifts my spirits, fills my mind with light, helps me feel more centered in the day ahead.

I need to stay in Hope as events try to batter me and lead me down a fearful path. I call on Hope for clear sight and a fearless mind.

God brings me Hope when all seems difficult and lost. I seek for Hope in my innermost being. There I find it glowing with Truth, filling the future with other possibilities. Hope helps me keep going through moments of struggle and leads me on to brighter pastures. It helps me hold an inner vision of goodness that the world cannot touch or destroy.

It is the guiding star of life.

I give thanks for Hope which blesses my day and keeps me safe from negativity.

I hold myself in Hope - not based on worldly things but on God who knows and loves and tenderly cares for me.

To the person with Very Severe ME, who has probably been ill for many years , even decades, there is little hope in the world; especially as there is no funding for biomedical research. NICE proscribes looking for the causes of ME and most of the symptoms are ignored, overlooked and often denied.

Let us pray for Hope.

a photo of two white tulips I choose Healing , by Linda Crowhurst
I choose Healing today...

I open to the healing power of God who knows and loves me. I flow with the belief that healing is real, is tangible, is here.

I immerse myself in the wonderful Living Presence of God with us. I feel uplifted, rested, restored. I ask for that healing to flow into all of my being, my mind, my emotions, my body, my spirit.

I ask that my thoughts find a gentle truth. I ask that my emotions be restored and balanced. I ask that my mind be cleansed and helped. I ask that the healing energy of love restores me physically and heals all hurts within me.

Not only this do I ask, but I ask for healing for all in need. I ask for the healing of the whole world.

God knows our deepest wounds. God can see all damage done to us. God can see the source of our illness and God knows our need. He is the Healer; now and forever.

I open up today to healing, knowing God can heal and more than this, knowing God will bring healing, even in some secret way I may not recognize.

God's healing love is within me and will bless me and the whole world today.

To the person with Very Severe ME there are no treatments to make you well, or even offer significant symptom relief. There is no hope of a cure on the horizon, because there is very limited research. Wanting to be made well, needing a cure, is not something that is likely currently; in the world today. The only real hope then is to seek for inner, spiritual healing and ask for miracles

Let us pray for Healing.

a photo of a statue of a woman in prayer I choose Prayer , by Linda Crowhurst
I choose to be in the Presence of God.

I choose to open to communion with Him and all that is. I am not alone. I am not separate from the world.

Prayer is the gift I have been given. Here I am one with the creator. Here I am held and loved. Here I meet with Him in wonder and awe. Great blessings flow from this all Powerful connection, This wonderful Presence, opened to through prayer.

Here too I bring others - all those in need of help and comfort. Here I can pray for the whole world. I cannot be separate here in this place of prayer. I am connected to all things. There is no separation only love. Love that heals. Love that restores. Love that accepts. Love that blesses.

Today I choose prayer. Today I am aware of " God with me " through the power and the mystery of prayer.

To the person with Very Severe ME, the possibility to go within and seek for something greater than your physical reality is a saving grace. To find God, to find that prayer is communion with God and that you are not alone, despite your isolation and desolation, is truly a powerful path to take.

Let us pray . Amen

a photo of white blossom against a blue sky I choose Life , by Linda Crowhurst
I choose life today ....

I see all things alive in God. I see all His goodness in the beauty of creation. This is where I place my focus. Each perfect flower alive with a radiant energy.

I reach my senses out to feel that aliveness, that precious reaching back to me. I appreciate it for what it truly is. I feel that life energy flowing out to greet me and filling me with its healing glow


Wherever I look I see radiance of life. I open myself to feel its presence and accept the gift it brings to me.

Even if I have no energy myself yet still I am alive in the wonder of God's Glorious creation. As I open to the energy of life so it radiates out and embraces me.

Today I feel uplifted and touched by life itself

To the person with Very Severe ME, it is essential to hold onto life itself, to seek for the vibrant energy of life; for in truth there is hardly any energy at all. Nothing functions properly in your body or your mind. You may regularly feel as if you are literally dying. On top of this you are immersed in a death-making culture that seeks to destroy your reality. Many people with ME commit suicide from the torment and the lack of hope, the lack of support on every level, the lack of integrity and respect from the medical profession and others.

Let us pray for Life.

a photo of a tulip growing through a bench. I choose Peace , by Linda Crowhurst
What does this mean - I choose Peace ?

It means that despite all the stresses of the day, despite all irritations, aggravations, worried and fears I choose to focus my awareness on Peace :

...a real tangible sense of peace that can be breathed in, which suffuses my body and all its hurts, which can lift my mind into a space of such calm sensitive peaceful reality that I can still find rest , even if rest itself is physically or mentally impossible.

I choose peace and feel refreshed choose peace and I stay in the present moment, seeking and finding, renewing and strengthening me.

Peace not of the world but within the fabric of the universe. I choose the very real Presence of God, who brings me Peace.

To the person with Very Severe ME, there is no peace, physically or mentally, because of the massive physical and cognitive dysfunction caused by the disease. Living in an environment where normality is hostile to you, brings a massive challenge to seek and find any semblance of inner or outer peace. Yet this must be the hope.

Let us pray for Peace.