Stonebird

  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 underst...

  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...

  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 emp...

  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

  SEVERE/VERY SEVERE ME : FUNDAMENTAL CONSIDERATIONS Awareness of the right approach, at the right moment, in the right way, with sensitivity and empathy is absolutely critical. Your presence is of the utmost importance: 1. all you say and do 2.how you are feeling in yourself 3. your energy level 4. what you are conveying through your posture 5. your values and attitudes These are all key to interacting well with anyone, but especially so, with someone who is in high physical pain and may have a range of tormenting, unremitting and very severe symptoms. It is important you know that the slightest wrong movement, noise or action, on your part, may lead to even worsening levels of symptom experience and physical distress. It is a very skilled approach. Every nuance, every breath, every movement counts and can bring relief or negatively impact the person. We recommend the MOMENT Approach, for more information please see : https://carersfight.blogspot.com/.../understanding...

  HOW TO REALLY HELP THE PERSON GET THEIR NEEDS MET. Everything you do and say is a potential source of harm to someone with Severe/Very Severe ME; I know this so well! If they react badly to you, consider the possibility that each word you speak may be experienced as a blow to the head or a knife to the guts, in terms of the pain it elicits. You do not experience noise or light or touch in the same way that they do, so you have to try even harder to understand what you are or might be doing to the person inadvertently by your actions which may be causing pain or disturbance. There are several possible carer responses to the dilemma of how to help the person get their needs met, including : Fear, preventing you from acting and helping, leading to avoidance, inaction and neglect or even negation. Ignoring the person’s reality, either by not helping them, assuming they will help themselves eventually or by just doing the care task anyway, because it needs doing, no matter what. ...

  HOW TO BE WITH SOMEONE WHO IS SEVERELY ILL Be    fully aware of the symptoms that the person is likely to experience, so that you are prepared, as much as possible    in advance.  Learn as much as possible about their diagnosis. Develop    trust. Believe the person and honour what they tell you. Develop excellent listening and communication skills. Thoroughly respect the person’s experience and the limitations imposed by their    illness. Show you respect, value    and appreciate the person,    through    a warm person-centred approach. On    a moment to moment basis creatively and gently meet the person’s    needs. (Adapted from : Crowhurst G (2005)    Supporting people with severe myalgic encephalomyelitis. Nursing Standard. 19, 21, 38-43. )