Stonebird


When you suddenly collapse, disappear from your normal life and are labelled with a diagnosis of  Myalgic Encephalomyelitis, aka "ME/CFS", you unexpectedly enter a no-mans land. Nothing is as it was before. Everything is impacted upon, either subtly or wholesale. An “ME/CFS” diagnosis is far too vague to accurately recognise or identify the underlying physiological disorder that underpins your devastating inability to think or move. ME/CFS is a vague conglomerate term, that covers up a range of disparate illnesses that are viewed as fatigue conditions, rather than the WHO neurological disease that the name Myalgic Encephalomyelitis originally represented, when first coined and was associated with enterovirus. Because the ME/CFS label you have been given is non-specific, without clearly identified physiological congruence and a safe, specified, appropriate biomedical treatment pathway, you may not be given the same medical respect of any other recognised physical ...

Stonebird Your loved one is suffering. It is coarse, raw, sweaty, smashes into shards, your fragile ego, strips naked that which you would never expose, leaves you almost unable to bear another moment of it, especially when the suffering goes on for decades without remit. Here I am learning about limits. I am learning about grief. I am learning about emotional survival. Here I cling on, feeling far out of reach, on a vicious distant edge, that few, if any, care to know about. And therefore do not reach back to comfort or guide me. Suffering reeks of despair. It feels endless and hopeless. It is painful beyond description. Yet there is a pathway you must keep finding, through it, in order to find meaning and restore hope. Otherwise the suffering will consume you - initially, if not long term - unless you can find a way to see all, including loss and grief, as a path and somehow find crucial self-support and milestones to help you measure along the way. Then you can find t...

Stonebird What is the difference between being listened to and not? You absolutely know - you feel it in your guts - when someone has not listened to or heard what you have actually been saying. To be heard brings a sense of rightness, of flow, of acceptance, of peace, relief even. An inner certainty arises from the connection made, when you feel truly that the person has listened fully to you, comprehended your meaning and heard what you have said, even if what you are saying is uncomfortable, challenging or difficult to relate to. To listen, really listen, is a very special gift to give another person. The opposite can be extremely hurtful or dismissive. Not listening shuts down communication and breaks any connection that might have been possible. It leaves the speaker feeling bewildered, shunned, shut out, discounted, disregarded, disrespected, isolated, even unsafe. At worst it is demolishing and utterly alienating. The skill of listening is extremely importan...

For any relationship, there is inevitably, over time, a challenge to grow, to deal with change, to face  adversity together. When very severe chronic illness invades your world, however, it brings a profound encounter with your own limits, paradox and mystery, for you are daily confronted on multiple levels with loss and grief alongside a need to rise above it all and find your true self, still shining, even in the darkest chasms of pain. The immense physical, emotional and spiritual stresses and strains of a situation where the other is long-term ill and disabled, brings encounter with loss, grief, anger, despair, a sense of hopelessness and helplessness. This requires great attention, so that they do not weigh down or overload you or negatively affect your relationship. It is so important to aim to keep stress for you both to a minimum, if possible. Stress complicates everything! This may mean fundamentally changing your life and the way you interact. It is not necess...

We like to think we are surrounded by angels, but when it comes to the complex dance we are  engaged in here, born out of complex hypersensitivities and multiple system dysfunction, even the angels must slow dance. It is intricately complicated, learning how to live and communicate with someone whose communication pathways are broken on every level. The one who cannot think, move, remember, speak, write, tolerate sound or movement, easily or at all, is drawn into a potentially fraught and delicate relationship with the other: If the person has to wait in agony, so you too need to wait, patiently and peacefully, hopefully, despite any personal frustration or need. 1.If the person cries out, you feel it deep in your guts. 2. If the person is suddenly confused, you too experience the uncertainty of confusion, not knowing exactly what is required. 3. If the person is cross or distressed, it breaks your heart. A fragile relationship is born over time, one that wends a path...

(Written for the 25% Group) When you help someone in severe pain, unable to communicate easily, with severe hypersensitivities to ordinary environmental things like sound, light, movement, smells, physical contact or your presence, then you need to understand the following: 1. Do exactly as you are asked to do things, at the exact time that you are asked to do them, in the exact way that you are asked to do them. The person you are helping may not react the way you expect, when trying to help them especially if you mistime or fail to help in the right way that they need. They may, as a consequence, deteriorate physically, making help impossible to repeat or try again, meaning the need may end up going unmet in that moment. They may respond irritably or cry out. 2. Do not take it personally, but maintain a sense of boundary between yourself and the person, which enables you to see clearly under pressure and understand the difficulty the person is having with t...

Think about this for a moment- how difficult do you think it might be to maintain any kind of hope, if  you were seriously physically ill, with multi- system dysfunction, for decades on end, yet you had no way of finding out what is going so fundamentally wrong, physiologically, in your body ? How would it be if you were not taken seriously by main-stream medicine or even if you were, the answers were still not forthcoming? What if your horrendous physical illness was consistently misinterpreted as just unexplained fatigue without any underlying pathology? What if you were harmed, sometimes for years or forever, by any and every intervention tried, because the physiological insight pertinent to your illness,is missing, so it cannot be taken into account? What if you were left to “just get on with it”, in the most intense, disabling, horrendous pain and agony, becoming more and more isolated and invisible? What if it was safer for you to not engage with people than to ...