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Showing posts from April, 2020

HOW TO CARE : THE IMPORTANCE OF AFFIRMATION

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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 thinking, finding soluti…

PROFOUND IMPLICATIONS FOR PEOPLE WITH A DISABILITY; THE UK CORONAVIRUS ACT.

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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 eligible assessed needs, a…

HELL TURNED UPSIDE DOWN : THE COVID PANDEMIC AND CARING FOR SOMEONE DIAGNOSED WITH VERY SEVERE ME.

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 took decades, to the…