Stonebird

  Sometimes I am amazed at how I cope, get through each day with Linda; her suffering is so intense. I am so relatively helpless to relieve it. However I have learned the power of presence and how that can lead to a place of peace : Once I let go of trying. Once I let go of my far too fragile ego. Once I let go of fear, of despair and flow. Just be. The mystics often refer to how God is found simplicity,in being still. Yes, that has been my great learning, these many years. How in letting go, you fly.

On the radio this morning they were talking about how there is ABSOLUTELY NO NHS PROVISION FOR SEVERE ME. In what other disease, Maeve Boothby-O'Neill’s father asked, would zero provision be tolerated? In what other serious physical disease, I want to shout, would baseless, psychiatric lie after lie be tolerated as truth? In what other serious physical disease would psychiatry be allowed to get away for decades with inflicting great , lasting and even deadly harm upon the most sick and vulnerable ? In what other serious physical disease would sufferers, paralysed, in agony, unable to tolerate sound, light, touch, movement, chemicals, be left with nothing whatsoever, not even respect? In what other serious physical disease would those who have it, simply not be believed? In what other serious physical disease , almost 70 years after it was identified, would a complete lack of treatment and not even a hope of a cure, be tolerated? For over 31 years, I the carer, have had to witness m

  THE COMMITMENT TO CARE https://stonebird.co.uk/morenotes/index.html The poster below might seem simple, but is much, much harder in practice. The skills required to care for someone with massive complex disability and severe symptoms are not at all easy. There are so many factors involved in even the simplest task. Can the person cope with it? What is involved? What are the potential issues ? For someone who can do so much more, it can be very difficult to just do what only what specifically is asked and not the slightest bit more. This takes immense awareness, genuine empathy and understanding of the other person’s reality -which you cannot know, you have to learn and keep on learning it. I cannot emphasise enough how important it is, to maintain focus on the person and the task required. The more you can develop awareness, the safer the person is going to be, from potential negative impacts. Partnership and understanding, learning from your mistakes and a combined understandi

  TO BE STRONG   Broad shoulders are required if you care for someone severely ill. You need to be strong: To be strong is to be your own person. To be strong is to be in touch with your own centre, your feelings, your values.  To be strong is to know what you stand for and to come from that position.  To be strong is to see, name and stand up for the truth. To be strong is to be able to recognise the awful, raging, devastating symptoms that render the person you care for unable to tolerate your presence . To be strong is to be able to stand back, without taking it personally. To be strong is to try and see the world, from the perspective of the person who is severely ill, not that you can even get close to it.  To be strong is to recognise need and take the initiative to do something about it.  To be strong is to act always with integrity, always with the greatest care and respect.  To be strong is to be able to pick yourself up, even, if all you have left is the hope in your heart. T

  To feel heard and seen truly is everything for the person diagnosed with ME. It is a precious gift, that few give sadly. When someone does give that gift it is very moving and life bringing. THE IMPORTANCE OF AFFIRMATION   Being affirmed makes such a difference when you live in an invisible, tormented world that no one understands or seems to care  about or even notice. Living in total isolation and separation can leave you feeling unconsidered, less than real, invisible, uncared for, unrecognised, unknown, belittled, less than human even and definitely unequal.  The need to be seen for who you are and what you have experienced and heard may be massive.  Affirmation means to give your fullest attention to the other. It means to watch for non-verbal cues as well as the words someone is speaking. It means to convey, both by your posture and look, that you really care about what the other person is saying. Even if you do not speak a word, you can still convey empathy for the person and

  INTERNATIONAL ME AWARENESS DAY MAY 12 2024 With thanks to the great Tom Hennessy, much missed, who was the founder of this day. What level of sainthood would you need To not be angry at the medical neglect, The tirade of psychiatric nonsense that continues to spout forth, And cover up the truth of a real, physical disease, That leaves people clinging to the edge of life In indescribable agony, with profound yet ignored, Incredibly serious system dysfunction? Linda Crowhurst