Stonebird

Breathing is such a natural part of life that the well person would not necessarily notice that they were doing it. For the severely ill person breathing is not that simple. Breathing can be a daily struggle; nothing , in this situation, can be taken for granted. The carer too struggles for breath, to breathe life into the day, to find new pathways, to keep hope alive. To face each impossible challenge. Almost inevitably we find ourselves knocked down time and again, and, in that moment, all feels lost. It’s a terrible place to be. The miracle is that time and time again we find the courage to pick our shattered selves up and, no matter what, make the choice to live our life.

  All our experience, two decades of living with and caring for someone diagnosed with Very Severe ME and extreme, complex hypersensitivities, finds expression in what we have termed the Moment Approach. I first outlined the approach in a nursing article that went on to be recommended by NICE in its 2007 Guideline. http://www.stonebird.co.uk/moment.pdf

  PERSEVERANCE AND ENDURANCE Impossible struggle forces you to ask “what really matters?” Right now is an extraordinarily worrying and disconcerting time on so many levels. On a personal level I am struggling with not being fit and well in my body. My wife, reflecting upon her deep suffering writes so wisely: “My world, so empty of business, becomes a place of waiting, seeking inner peace and understanding. The things I know are hard won amidst the decades of intense suffering. The emptiness of action, is replaced by the stillness of pure being.” “Stillness of pure being” …………. How could anyone, apart from those who have experienced profound pain and the loss of ability on every conceivable level, begin to even grasp what “stillness of pure being” means? I’ve gained some kind of insight, but frustratingly my words are clumsy. I just don’t have the vocabulary. Nonetheless, what matters especially now, I think, is the courage to step up, to deal with what needs dealing with.

Here I am learning about limits. I am learning about grief. I am learning about emotional survival. Here I cling on, feeling far out of reach, on a vicious distant edge, that few, if any, care to know about. There is no one to comfort or guide you. Suffering reeks of despair. It feels endless and hopeless. It is painful beyond description.  Yet there is a pathway you must keep finding through it, in order to find meaning and restore hope. Otherwise the suffering will consume you - initially, if not long term - unless you can find a way to see all, including loss and grief, as a path and somehow find crucial self-support . Then you can find that it is possible to face your situation with dignity, you can find meaning and purpose, even in the most awful, indescribable circumstances and desolation even.  (Adapted from "More Notes For Carers"  https://stonebird.co.uk/morenotes/index.html ) See less