Stonebird

You know the old saying,, you spend all your life climbing the ladder, only to find it was up against the wrong wall. So, what wall is your ladder propped up against? Is it the right or wrong wall? It’s a question you may want to answer, before it’s too late. Me, I’ve spent decades of my precious time, battling for the truth of ME to be heard. I am not saying that I have wasted my time - though, when you stand back ask the question, as I have recently, was there ever any realistic chance of overturning the all-powerful psychiatric establishment, it is hard not to wonder if all this time I’ve been trying to clamber up the wrong wall. All day yesterday, I was filled with the most tremendous pride and admiration for Kara Jane Spencer, without whom, my book, Notes For Carers, to which she contributed her enthusiastic, loving support plus a great deal of absolutely superb material, would be a much lesser work, if it existed at all. Here she is, all over the BBC, doing more...

5.30 am, a glimpse of the rising sun, through a hedgerow, fills me with hope, for this new day. So how is it going to be? Inevitably it is going to be painful for my wife, constantly shot through with agony, paralysis, inability, profound , tortuous hypersensitivity , unbelievable torment. But how am I going to be within it? ...distracted, withdrawn, irritable, tired, bored, listless, unable to bring any light to the situation, do anything much at all? Or will I make all the difference today? ...by being present, alive, interested, open, aware, gentle, warm, welcoming, willing to help, to think things through, work them out together? Will I know joy, will I experience togetherness, partnership, miracles, will today be wonderful , despite the atrocious suffering - in the moments in between, even if just in glimpses, even if just for a second or two ? Here, in the beauty of dawn's first light, I know how much is down to me - to how I will choose to be today. ...

It is not simple - or even reasonable. It so much more than just being in the room with the person. To be in the room without awareness of what it means to be truly present, can be catastrophic and deteriorative - the very opposite, possibly, of your intention. In order to be truly present you need to: Focus on the person Understand the symptoms that they are experiencing and how they affect the person directly - what level of suffering they might be experiencing which may get in the way of connecting and two way interaction. Recognise the signs of distress, deterioration, increased agony and any likely triggers for worsening their experience. Be aware of your own inner energy and external non-verbal communication and body language. If you are irritated, disinterested, distracted, unmotivated, feeling critical, worried, sad or negative yourself, for whatever reason, unfortunately the person is likely to sense this and feel exhausted, irritated, negat...

Answer: ....sensitively, slowly, carefully, tenderly. With great awareness of your hypersensitivities, by not worsening light exposure. By being extremely quiet, calm, peaceful, gentle; by patiently working together with you in partnership. By avoiding any sudden movement or gesture; By waiting for the right moment to try to meet your need safely. For much more information on caring in complex illness, please see : https://stonebird.co.uk/Notes/

Stonebird Every moment is a moment of extreme limitation Every moment is a moment of constant and severe physical torment Every moment is a moment of total constant continuous pain everywhere Every moment is a moment of unpredictable reaction Every moment is a moment of feeling severely ill. Every moment is a moment of numb limbs. Every moment is a moment that the environment is hostile Every moment is a moment where noise is harmful, damaging and dangerous. Every moment light pierces and impacts painfully. Every moment is a moment that the world is inaccessible. Every moment the environment is hostile and unpredictable. Every moment is a movement away or towards paralysis. Every moment is a moment of inability. Every moment is a moment of brain fogged unreality. Every moment is a moment of difficulty interpreting incoming information. Every moment is a moment of physical difficulty. Every moment is a moment of physical distress. Every moment...