Stonebird

British Journal of Nursing, 2012,Vol 21, No 11 COMMENT Carers Week: unpaid, but as professional as they come  (Extract) When I qualified as a registered nurse back in 1984, it was with a fierce pride; I was a professional. Thank goodness, for it is that professionalism, instilled in the nursing code, that has carried me through the last 18 years of caring for my wife full time. As I explain in my new book, Care for Someone with Severe Myalgic Encephalomyelitis, to be a carer, I choose to commit to: Be brave; Be open; Be true; Be strong; Be alive. Bravery is called for during every minute of every day, when you care for someone with Severe Myalgic Encephalomyelitis (ME). It takes bravery to look into their eyes and see the suffering; to respond with kindness and gentleness; it takes bravery to speak up. You cannot undertake the carer’s journey if you are not prepared to respond instantly and compassionately to the ...

The Carer Suite You have to go beyond words - to express the agony  of caring for someone with Severe ME - the link above is to my  symphony on Sound Cloud....

What does  it cost, this caring ? Why, everything you've got and that is just the beginning of the journey. If only people understood. No I cannot drop everything and be with you in an instant; I have a noise sensitivity issue to deal with that is breaking my heart. Do you have a clue what I am talking about ? We did not meet. A rare moment was missed, a fragile , goassamer-thin chance to be together,  a precious time , if only you knew how much it would have meant to me  , that did not happen. Misunderstanding. And I, staggering, am left full of grief.

It began with  Jan Van Roijen posting  details of this gold standard  study : http://www.springerlink.com/content/x17x860280077516/?MUD=MP ....proving  that Irritable Bowel Syndrome is linked to bacteria infection. Yet AGAIN  the psychiatrists have been proved  wrong - way back in in the day (2004) Hooper & Williams wrote so poignantly    : In the  British Journal of Psychiatry 2004:185:95-96  (IN DEBATE: There is only one functional somatic syndrome), psychiatrists Simon Wessely and Peter White  revisit the notion proposed five years ago by Simon Wessely and Mike Sharpe in The Lancet.  That notion was that what they decreed to be medically unexplained symptoms and syndromes such as irritable bowel syndrome, fibromyalgia and chronic fatigue syndrome should be combined into a single psychiatric disorder that they termed “Functional Somatic Syndrome” (Lancet 1999:354:936-939). Wessely states that h...

The Power of Pentecost is here with us today, right now. Be open to accept the Holy Spirit. He is real. He is alive. And He is with us. All things are possible with the Holy Spirit. All Mercy is received. All healing available. All hope is true. Let us do more than Trust that the Holy Spirit is with us. Let us know and rejoice in the Power of the Spirit. May we sing Holy words and our souls rejoice in the Truth of Pentecost. Who knows what miracles happen when we live in the Love and the Power of the Holy Spirit, who completes the awesome Trinity and flies to us from the Heart of Love ? Amen. Let us rejoice then and give thanks and praise. Let us be empowered by the Spirit of Truth. Let us be open to receive  and live in the Spirit right now. Amen.

Karina update, May 25th, 2012 English and Danish Good news! Karina is getting her first intravenous treatment at home today, on May 25th! Actually, this afternoon, she is already getting the IV drop! On Wednesday the 23rd, an appointed doctor and Dr. Isager visited Karina’s house. The appointed doctor told Karina’s parents that there were no further plans to remove Karina from her home and that they would work on getting the IV started in the home right away. It still seems unreal to the family. They have been through so much. They send their thanks to all of you who wrote and posted about Karina. They are sure it helped. One correction about my earlier posts: I wrote that the Board of Health planned to commit Karina and I want to clarify what I meant.  The Board of Health technically cannot commit anyone because a doctor has to sign the paperwork. So the Board of Health did not directly order Karina to be committed, but a consulting doctor at the Board of Health...