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EXTRA CONCERNS FOR PEOPLE DIAGNOSED WITH SEVERE ME, IN THE THREAT OF A NEW LIFE-THREATENING VIRUS.

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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. Without specific …

SEVERE ME : THE UNEXPECTED LOSSES

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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 disease. You…

SAINT OR SINNER? CARING FULL TIME FOR A PARTNER OVER MANY YEARS, THE LOSSES.

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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 that it is pos…

THE LONG HAUL CAN BE A VERY LONG TIME : LISTENING SKILLS IN THE CONTEXT OF COMPLEX CHRONIC ILLNESS.

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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 important, but one that not …

ON BEING A PARTNER TO SOMEONE WITH VERY SEVERE CHRONIC ILLNESS

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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 necessarily easy but …

DANCING AROUND THE IMPOSSIBLE : RELATIONSHIP, COMPLEX HYPERSENSITIVITIES AND MULTI-SYSTEM DYSFUNCTION.

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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 between silence, s…

FIVE IMPORTANT LESSONS WORTH LEARNING WHEN CARING FOR SOMEONE IN SEVERE PAIN WITH PROFOUND HYPERSENSITIVITIES

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(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 the way you are interactin…