Only Now is Important
Thoughts from a very severe M.E. Sufferer. My heart goes out to her and also her devoted husband too.
My moments are mostly empty, numb, paralysed, noise assaulted, pain filled, agonised; waiting for movement, waiting for thought, waiting for feeling, waiting for something to happen that does not harm or disturb me, waiting for quiet, waiting for pain to subside, even though it will not, does not, can not.
Into this empty void of life comes awareness, just about its only gift. Awareness of being, not doing, awareness of time, awareness of what is important, awareness of life, of breath, of being, of God Himself, being here with me.
Time stopped being linear a long long time ago for me. The future cannot be planned, the past cannot be well remembered, only the present exists. Nothing is predictable, nothing is plan-able, nothing is reliable therefore only being here, now, is important. Only the present is. That is what my life has become. Time has slowed. It seems to flow…
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Feeling broken….
So not wanting to rehash all that has been in the press… I’m left yet again with a feeling of impending doom….. I’m yet to fully understand the true implications of this bit of current new research… but it’s not doing much for the most severe suffer….. nobody is doing much for the most severe cases…. I wonder how many will just give up the fight… the continual daily battle… it breaks my heart when I hear we have lost another fellow warrior….. that they could no longer face this demoralizing existence…. It’s a daily miracle that we manage to survive….. that those of us with the energy to fight on do so for all those who can’t….. there are wonderful kind beautiful people who I’ve the privilege to call my friends ….. who are supportive …. who use valuable energy to help us understand the complexity of…
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Quo vadis, Science Media Centre?
Thank you for such a detailed and also witty response to the SMC drivel. Very much appreciated. Re logged.x
Yesterday saw some positive media headlines for the ME community. The research from Columbia University by Hornig et al, concerning the level of cytokine activation as a potential biomarker for ME, looks promising[1]. ME research indicating a biological pathology is often dismissed due to the small number of participants but this was a study comprising 298 ME patients and 348 controls, which will hopefully give it more weight in scientific circles[1]. Unfortunately, as is usual with UK media coverage, reporting was not unequivocally positive; the difference in tone between the UK and US media coverage was marked. In the former, most of the usual suspects promoting the psychogenic paradigm were quoted, aided by the Science Media Centre (SMC). There is little hope of this group of psychiatrists going quietly into the night and we will probably experience a backlash from that quarter; they have much to lose if and when…
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Hate speech is not knowledge
Excellent explanation of what’s wrong with some academics, journalists and sadly doctors who like to throw their two penneth in about M.E. A worthwhile read.
its not over till the fat lady sings
The silly IOM ( institute of morons ) renamed of our illness S.E.I.D. my memory is so shot from having Myalgic Encephalomyelitis I can’t remember what the so called new name is…. it doesn’t have a WHO code ..or a very good definition… but that doesn’t matter does it…. I do know how these government types love the acronym .. so goody an easy one to remember it spells D.I.E.S. backwards…. just how fortunate are we….
I’m sure there are so many of us who are just enthralled with the shiny new name…… Can’t wait for the none testable flood of new victims who will be pumped full of the new wonder drugs….. the drugs that have not helped or cured us in the last 30 years……
You may detect from my sarcasm that I’m a little testy about the whole thing…. a very wise assumption….. but they haven’t won…
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A proposal
Anyone out there able to join in with this?
This post is not what you might have expected; it even has a working title:
Growing up with ME: surviving childhood and becoming an adult while chronically ill
We would like to invite you to participate in an anthology on children with ME. If you are an adult who became ill as a child or teenager, we would like to hear from you.
Background: children and teenagers suffering from myalgic encephalomyelitis are especially vulnerable; having become ill as children ourselves, their welfare is of particular concern to us. The experience of becoming chronically ill when young is quite different to becoming ill as an adult. Children often endure illness unheard and ignored, with none of the life experience or authority of an adult to help them cope with their significantly altered condition. They have the added problems of dealing with incompetent medics, school psychologists, physiotherapists, uncooperative school staff and…
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Misrepresentations of Chronic Illness and Disability
This is very interesting.
There has been some discussion among sufferers of chronic illness and disability as to the usefulness of theoretical or conceptual models (social, biomedical, etc) to explain the complexity of disability and chronic illness. A concern raised in the past few days, following a blog post that addressed the social model [1], was that no theoretical model could fairly represent the circumstances in which chronically ill people find themselves. Two points regarding this:
1) When we deviate from norms we will invariably be subjected to all manner of analyses that explain through some lens why we no longer form part of the norm. People have always been interested in learning more about difference, and unfortunately that learning often involves (initial) stages of turning those who are ‘different’ into the ‘Other’. It is called ‘othering’ and the more extreme forms of othering range from character assassination and ridiculing, to hate crime. All…
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