Stonebird

  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. )

  STONEBIRD Just to let people know that I have updated Stonebird, with a lot more information on Caring issues. We are no longer active advocates for ME, however I have linked to many of our documents, which may be of use. There is also a link to the Blog, which is updated regularly on general issues. STONEBIRD.CO.UK Stonebird: The Lived Experience of Severe Myalgic Encephalomyelitis (ME) The lived experience of severe myalgic encephalomyelitis.

  CARING FOR ME, A SHORT POCKET BOOK COURSE I am sorry to hear that the link to "Caring For ME" on Stonebird hasn't been working. I have just sorted that out! If you don't know about the book, well, it is the Course and the Information I would have liked to have available to me when I was first faced with caring for someone diagnosed with Severe Myalgic Encephalomyelitis. For little did I know that i would need to develop an extra special level of awareness, one that is not obvious, easily won or even known about, one that requires time, skill, commitment, determination, empathy and above all, boldness of heart. To my horror, it did not take me long to discover that the most severely ill, in indescribable agony, with multiple unalleviated symptoms, are most often than not, left with no clear pathway for how to cope or survive. Their suffering so extreme, their illness experience so incredibly complex and unpredictable in its impact, it can be very difficult knowi...

  CARING FOR ME, A SHORT POCKET BOOK COURSE I am sorry to hear that the link to "Caring For ME" on Stonebird hasn't been working. I have just sorted that out! If you don't know about the book, well, it is the Course and the Information I would have liked to have available to me when I was first faced with caring for someone diagnosed with Severe Myalgic Encephalomyelitis. For little did I know that i would need to develop an extra special level of awareness, one that is not obvious, easily won or even known about, one that requires time, skill, commitment, determination, empathy and above all, boldness of heart. To my horror, it did not take me long to discover that the most severely ill, in indescribable agony, with multiple unalleviated symptoms, are most often than not, left with no clear pathway for how to cope or survive. Their suffering so extreme, their illness experience so incredibly complex and unpredictable in its impact, it can be very difficult knowi...