Greg Crowhurst , May 2nd 2010Days when I could travel to see my widowed mum, days when I could go to a meeting, a conference, chair a meeting, be at a meeting, get on a train, go on a bus; those days .Those days are gone , are behind me now.
Nowadays , each day gets narrower. Decreases in width to the length of a garden bench, if one is lucky , or to a chair arm, where you sit perched , your arm around your loved one. Feeling her muscles tense , like wire, with pain and suffering. This is what I am talking about now.
Now here is what the Health Authority have just sent out, here is their vision , hot of the press, for a "CFS/ME" service :" The main symptom of CFS/ME is a feeling of unusual and excessive tiredness" . You can guess what follows next : " There is now good evidence for management strategies such as activity management, which enable people to control and improve their fatigue levels. This is done by addressing how energy is used and managing other factors which impact upon fatigue. Also it is useful to use strategies to control debilitating symptoms."
As if I and others in the Region have not uttered a word these last five years about the fact that ME is a WHO neurological disease. As if I was not once the Regional Patient Rep Chair , as if I have not written countless letters to the newspapers, my MP and the Health Authority , as if I have not sat down with them and physically shown them videos of my wife's suffering, as if I haven't pleaded with the Chair of the Health Authority and the Chief Medical Director in person , before it is too late, for biomedical tests and treatments for ME, as if I didn't spend so much precious time, over the years, at so-called "Consultation" meetings.
When I see my wife this ill, I know that this is the heavy cost that we have had to pay for my "activisim"
But as if none of that has happened, here, regardless, comes along this "CFS/ME" Service Plan. Same old, same old plan which has been there all along , same old plan that was drawn up in the first place without any patient consultation, same old plan which we have fought against all along and which is now to be rolled out across the entire Region.
Here's the thing : they want us to comment upon it .
Now there comes a time when "consulting" turns to "insulting" and that time is now.
What more can I do, than sit on this bench, on a beautiful sunny day, when we could be doing so much, my wife in tears with pain, than scream inside.?
Screaming is all I have left now..
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