Stonebird

Being affirmed makes such a difference when you live in an invisible, tortured world that no one understands or seems to care about or notice. Living in total isolation and separation can leave you feeling unconsidered, less than real, invisible, uncared for, unrecognised, unknown, belittled, less than human even. The need to be seen for who you are and what you have experienced and heard is massive. Affirmation means to give your fullest attention to the other. It means to watch for non-verbal cues as well as the words someone is speaking. It means to convey both by your posture and look, that you really care what the other person is saying. Even if you do not speak a word, you can still convey empathy for the person and what they are sharing, even if that content is painful, unresolvable or distressing. You must be very aware of your own posture, your body-language and the messages you are conveying non-verbally. Sometimes words, opinions, positive ...

The UK Emergency Coronavirus Act, which came into law on March 25th temporarily suspends local authorities’ legal duty to meet the care needs of all people who are eligible under the Care Act 2014; that could have profound implications. People who are elderly, chronically ill and/or disabled, in other words, the most vulnerable, no longer have any right to in-home, residential and other community support services. They only have a right, under European Legislation, to social care to keep them alive and uphold their right to privacy and family life. What are the possible outcomes of this draconian law? It could mean that people, who desperately need physical care, may have to rely upon friends and family for care. But what if sole carers, with no wider support network, fall ill? What then? This scenario does not bear thinking about. The legislation allows councils to prioritise who and what type of needs it will meet, rather than being required to meet all eligi...

I wrote a song once called “Seventh Circle of Hell”, for that is the level of Hell my wife has been trapped in, without recognition, hope or treatment for nearly three decades. Unspeakable as it is, the situation then was very different compared to what we are experiencing now under the Covid 19 Pandemic : a profoundly serious threat to our life and those of the others hidden and locked away too, due to Severe ME/Very Severe ME. https://www.youtube.com/watch?v=y6TkTHLQjIk We were living on the edge, well hidden from view, but it was an edge that we knew and had learned how to negotiate within, to a small degree, after years of fighting and struggling to get need met. After disastrous interventions that caused lasting harm and after years of hoping for knowledgeable medical input that was not forthcoming , we had figured out the risks to noise, sudden movement, motion, exertion, perfume, light, touch, certain foods, interaction of any sort ourselves. Though it...

Not enough is known, medically, about those people diagnosed with Severe/Very Severe ME, to know  how any treatment or vaccine might affect the person. There is not even any agreed definition of ME, there is no universal safe treatment pathway, there is not enough good care guidance, to help doctors and nurses know how to deal with a person with ME, let alone if they then contract a dangerous virus, like Covid 19 on top of it. Anyone admitted to hospital will be reliant upon the medical staff understanding their physical and cognitive issues, their specific hypersensitivities, their complex communication difficulties and care needs. Yet, given how much misinformation has been disseminated about ME having no underlying medical pathology, about being a mental health condition, their serious, physical, underlying disease may or may not be understood, recognised or even accepted. This could make the experience of having to go to hospital even more fraught with difficulty. W...


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...