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To be strong, a carers perspective

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  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

Affirmation

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  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

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  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

Fundamental Considerations

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  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-mom

The Moment Approach

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  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. Dist

HOW TO BE WITH SOMEONE WHO IS SEVERELY ILL

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  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 updated

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  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.