Stonebird

  FREE-BURNING That’s how I describe the nightmare, when her agony and all her symptoms are firing out of control and you feel so helpless. Which is most of the time. Most of the time she is unable to tolerate anything. Most of the time her broken body is screaming on the edge of existence. Most of the time her experience is one of sheer, brutal torture. So, how does one respond? As I see and experience it, there’s at least four possibilities. One is RESENTMENT: Being pissed off because there’s so much else that you would rather be doing, consider yourself entitled to be doing. After all, this is your life too, why should you give it all up for her? If only she would pull herself together, isn’t that what sick people should be made to do? How unfair it is to be stuck in the house all day with someone who can’t do anything, go anywhere, who’s tormented by every sound and movement. Best leave her to get on with it by herself, there’s nothing anyone can do anyway to make it better. T

FIVE NON-NEGOTIABLE RULES WHEN CARING FOR SOMEONE IN SEVERE PAIN WITH PROFOUND HYPERSENSITIVITIES Every noise, every movement, every action that you make, matters more than you will ever be able to fully understand, never forget this. Always strive to provide the very best care that you can. Learn as much as you can about the person’s symptoms, about how severe each symptom is and, in particular, about how much worse the person’s experience can so easily become, if you are not careful enough, moment by moment. When you help someone who is unable to communicate easily, in severe pain with complex hypersensitivities, then the following, really, is non-negotiable, it is that serious: 1. Do exactly as you are asked, at the exact time that you are asked to do it, in the exact way that you are asked to do it. It is alarmingly easy to get this wrong! 2. Do maintain a strong awareness which enables you to see clearly under pressure and understand any difficulties the person might

  NO WAY TO LIVE It has to be the most heartbreaking place imaginable. Those who suffer from profound hypersensitivities on multiple levels, endure indescribable suffering. It is no way to live. It is no way to have a mutually enjoyable relationship or any relationship at all with other people. It is no way to feel comfortable, safe or equal in the world. How do you convey to someone who does not notice, how much they smell and what a massive risk that poses to the person who suffers from Perfume Sensitivity ? How do you convey the extreme pain that flicking a light switch on can cause to someone with Light Sensitivity ? How do you begin to explain the dire torment of noise sensitivity, which makes going out into the world very challenging or even impossible? For a person with Touch Sensitivity the slightest pressure can feel like a heavy weight and be intolerable. Clothing, bedding, personal contact of any description, may be agonising. How can people remain in loving or s

  HOW CURIOUS That when a well person, who lives in the ordinary world, asks you about how you are and you, at great effort, write back and tell them, that almost inevitably, it seems, they do not reply. The other puzzling thing they do is say: “hope you are well”. Have they missed the many, many years of devastating destruction and horrendous illness and symptom experience that means you can never say you are well? Wellness is a far distant memory. These two things have happened to us so often, down all these decades of severe illness and isolation, that I am beginning to wonder if it might be some kind of phenomena. It seems to be left to those who are the most sick to share kindness, empathy and support to others who are suffering. I wonder has anyone else experienced it, the curious, or should I say, the rude silence or the inappropriate superficial, general, throwaway query? I can’t figure it out. Why ask in the first place, if you don’t really want to know? Maybe

THERE IS NOWHERE SO LONELY As the silence, broken only by her occasional sob of agony, fades to dusk And all her hopes, So tiny they would break your heart, Lie crumbling on the floor. There is nowhere so lonely As the bleakness When you make things worse, Much, much worse, By your attempt to help. There is nowhere so lonely As the dark room And the cluttered settee Upon which she sits slumped and paralysed Her whole life long. Greg Crowhurst

  NOISE SENSITIVITY : it has to be one of your worst nightmares, with no physiological explanation, little understanding, immense difficulty with interaction on every level and no easy solutions other than to withdraw from contact. It is, by far, one of the most difficult challenges we face as a couple. It is heartbreakingly hard to recognise how catastrophic the slightest unexpected sound or movement can be: how, in an awful instant, the person you love and care for can be plunged into a tormented, screaming, agonising chasm, that can last for hours, days, years even. The torment is indescribable. People may experience it to different degrees. Some can use ear defenders or ear plugs to partially protect themselves. Others may simply not be able to tolerate the pain and pressure of using them. Massive sensitivity is required. Even the sound of your breath can be too loud, your sudden cough annihilating. Just your walking into the room can torment and cause unimaginable sufferin

  UNSUPPORTED and UNRECOGNISED The vast majority of carers here in the U.K., are at breaking point, are struggling with “very bad mental health problems”, are feeling hopeless, despairing, tearful, even suicidal, according to the latest Carers UK Report, please see below. As if we didn’t know that. Unsupported, unrecognised , they struggle to carry on. Same old, same old. Every single year that I have been a full time Carer, that’s thirty now, a very similar “State of Caring” report is released. Not one has made a difference to my life, as far as I know. Pay carers at least the minimum wage, provide truly independent support and counselling , maybe find a way to tap into the wisdom and insights us older, long term careers have gained, to help others navigate their way through, offer opportunities for lifelong learning and development, this is absolutely vital, give us all the equipment we need……….everyone knows what is needed. But no one ever does anything about it. Apart from writ