Stonebird

The presidents of the Royal College of Physicians, Surgeons, GPs and Nursing and the chair of the British Medical Association are all warning  that a   second wave of coronavirus infections in the UK is a “real risk”. Of course it is !! Anyone, surely, can see that. As a carer for someone diagnosed with Very Severe ME , I cannot afford, for a second to go along with the wishful thinking sweeping right now across  the UK, that  things are almost back to normal. It is  terrifying to me, when I have to take the dog out, the  sudden appearance of groups of young people , all hand in hand, partying  up and down our street , the sudden large family groups with  their dogs out strolling, how little notice people are taking of social distancing . What  massively increased  risk it is, to step outside the front door! I dread what would happen to Linda if I should catch  Covid. the consequences are unthinkable!   It f...

As Lock Down eases here in the UK, the agony of permanent isolation and endless neglect for the most severely ill, is much more acute, as Linda expresses in this terribly poignant poem : They make me feel lonely. They do, With their laughter and easy chatter, The sound of champagne corks bursting And the general loud jollity of their gathering, Echoing across the garden To me, Sitting In isolation Not just for Lock Down’s sake But Always. For their noise Is a danger to my health The champagne uncorking Paralysed my left leg Increased my pain Blanked my mind further Left me stumbling, down the garden path to find seat. As people start to meet up Have garden parties And begin to mill about again Or cycle at speed past my door, Let us remember the truth That the virus has not actually gone away Despite the frivolity It's still there Lurking And can still kill The innocent by stander Who has no chance of survival. As they dismember the suppo...

It is a huge affirmation to have had my video on Forgiveness, shortlisted for the prestigious Alpine Fellowship Award Art Prize! Every morning I got up early to draw the pictures, write the music, work out the story. Many, many thanks to Linda, it was her encouragement that drove me on. The Video is based on my long experience of being a Carer. I would like to use this opportunity to announce that my fourth- and final book on Severe/ Very Severe Myalgic Encephalomyelitis : "More Notes For Carers" is currently being prepared for publication. Gregx

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/