Posts

Not help at all

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  HELPING SOMEONE WHO IS LONG TERM VERY ILL The manner in which you present yourself in the caring role, is critical to the success of the interaction. How you speak, act, move within the person's environment can harm, shock the person, lead to physical deterioration and distress, if it is not grounded in sensitivity to their vulnerability. Remember this, you can help or harm. There is no room for carelessness, clumsiness, impatience, inattention; the harm you can inadvertently do to a very ill person is not just in the immediate moment; the impact may go on for days, weeks, months and can be catastrophic. It is too easy to cause harm even by the simplest action, wrongly timed or inappropriately carried out. You need to be knowledgeable about the seriously ill person in whose presence you are, you need to be aware of their symptom experience as well as the impact you are likely to have upon them. You need to make sure that the thoughts you have are the right thoughts to have in

The Amazing Stonebird and Pups and Paws Prevention CIC

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We are incredibly moved that Leonie Morris, of Pups and Paws Prevention was inspired by the Stonebird ethos to create a wonderful gift idea to sell to raise money for several charities she is passionate about helping, both in the UK and abroad, in particular PennyPaws Rescue charity who we are also delighted to support through providing art and pictures for animations.  She recently sent us these delightful birds with some bird seed and the wonderful laminated information about the Stonebird belief that everyone is precious and their presence matters. This is also true of the animals that she is supporting in this incredible way. We are proud to support Pups and Paws Prevention CIC. You can see the website here for more information and available products. https://www.pupspawsprevention.com/?fbclid=IwY2xjawGQg3hleHRuA2FlbQIxMAABHUKVL-zwSKLa6hxovyrfPt3oOXQufjiS3fKFWHuUzWpgfnXFSzi2jzZhMQ_aem_I2JGK5hZUpD0ZuoAQN3Z-w What is so moving, as you can see from the post below, she is raising aware

Advocating for someone who is very ill

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  ADVOCATING FOR SOMEONE WHO IS VERY ILL For me, deep down shy, reserved, not wanting to upset people, as I am, of my most difficult roles is that of advocate, speaking up on behalf of my wife, doing what requires doing, to ensure her needs are met. Basically, you just have to do it, but this, as I discovered recently helping my wife in hospital, is not that easy. It can take incredible courage and extraordinary determination, on your part, to put yourself out there. To do it, to get what the person needs, whether that is a glass of water or an entire service, you are going to need good negotiating skills. You will need a solid grasp of the issues and facts, so that you are not outwitted by the other's, all too common, "yes/buts", leading you away from truth, to their relative view. You must be aware of how a relative view corrupts truth. You need to stand firm for the person’s and their reality especially where others are angry, limited, misinterpreting or compromisin

Life worse than a nightnare

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  I have never been able to get even close to describing the full horror of our situation. My wife lives in a world incomprehensible to most. She is unable to see people. She is unable to physically function, except in incomprehensibly tiny ways. She is tormented by every sound, loud or small. She experiences extreme constant pain, paralysis, very severe cognitive issues and profound environmental hypersensitivities, making her life worse than any nightmare. Her suffering and the total isolation are beyond most people’s ability to visualise. Decades of misinterpretation, mistreatment, hostility and profound levels of both medical and social ignorance, have so harmed my wife that she cannot safely ever engage with anyone, even myself. It is extremely rare that anyone even asks after my wife, never mind ask me how I am doing. What, I wonder, sometimes, would I say, if I was REALLY asked -“ how are you?” I just couldn’t tell them though. I don't have the words anymore, there's

Boxed in

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  I feel boxed in yet again  No words describe The endless, formless pain That inhabits my body Inhibits my movements Takes away my ability Insinuates itself inside my brain And stops all thought And interaction Every train Of thought  Derailed And going up a siding… In need of great repair. 30.6.09

A NEW SONG

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  STONEBIRD https://www.youtube.com/watch?v=xffjzaBi1mA She sits silently waiting Unable to move She stares into the distance Her eyes all throbbing in pain If she had wings Then they’d be closed If she had wings Then they'd be folded She's unable to talk She's unable to focus The pain burns her whole face Her muscles have ceased to function If she had wings Then they’d be closed If she had wings Then they'd be folded Flight is an impossible dream for her A memory of another life time Her grief is indescribable So many untold losses If she had wings Then they’d be closed If she had wings Then they'd be folded (Words and Music Greg Crowhurst 2024) https://stonebird.co.uk

August 8: SEVERE ME, YOUR WORSE NIGHTMARE

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  SEVERE ME, YOUR WORSE NIGHTMARE I want you to think of the worst illness you have ever had Remember how dreadfully ill you felt How everything you normally did suddenly became totally unmanageable Perhaps your head hurt so bad that you had to lay in bed all day to cope Perhaps you felt or were utterly sick and food made you feel even worse Perhaps you were dizzy, off balance and disorientated so that you had to sit or lie down or fall over Perhaps you had an operation and felt weak, groggy and sore. You must have felt out of synch with the world and unable to participate in it like you normally would Now I want you to add pain Pain that spreads all over your body Not just one sort of pain but pain that throbs , pain that burns, pain that itches and screams at you pain that crawls up your skin and invades every millimetre of your body: Your nose, your eyebrows, your eyeballs,your ears, your scalp, your neck, your front, your back,your toes, even the soles of your feet Everything e