Archive for August 2014
Warning…the following blog is upsetting and about impending death.
Recently there have been a lot of questions in the community about what has happened to me and where I am with things. I am now very near the end of life, and writing posts has become next to impossible, but I wanted to try to get one more out. This post will be written in many parts, and may seem rough around the edges, but it is the best that I can do at this point. I know you will understand.
First, regarding care. My initial reevaluation for hospice care was denied – in part due to misinformation coming from the whole CFS mixup. After this, my doctor agreed to treat me himself, without the aid of nurses since he couldn’t find a way to get any into the home. Things began going downhill so fast, however, that he recently talked the hospice team into readmitting me…
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August 6, 1945, the United States used a massive, atomic weapon against Hiroshima, Japan. This atomic bomb, the equivalent of 20,000 tons of TNT, flattened the city, killing tens of thousands of civilians. While Japan was still trying to comprehend this devastation three days later, the United States struck again, this time, on Nagasaki. ( 9th August 1945)
The 69th anniversary of Hiroshima and Nagasaki, reminds me of Chomsky’s observation that the way to win a war is to attack the other side’s civilian population … it worked in Japan, and (particularly at the moment) it is obviously the strategy.
More than ever before, we are being brought face to face with the horrors of the bloodshed. The genocidal intent of the Israelis in Gaza, the barbarism of ISIS in Iraq, the murderous gas pipeline power struggle in Syria, the little reported
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This is my small contribution to Severe ME Awareness and Remembrance Day: August 8th 2014.
Imagine a world where four walls are your only view,
Not just for the day but for years sometimes decades.
Imagine some days you felt so ill you couldn’t raise your head from your pillow.
And you can barely speak or see.
But doctors won’t believe you and worse still, if they do, they have nothing…absolutely nothing to help you.
How would you cope and what would you do?
Would you lay there and give up?
It would be understandable if you did.
If you curled into a ball and slowly let go of life.
Or would you fight it?
Would you beg for help, for someone to please help ease the pain and the suffering.
Imagine how scary and how strange it would be if no-one was listening.
That safety net we all believe in…doctors and nurses and caring hands in hospital…closed their ears to your cries.
They block out the image of you suffering and choose to not believe you are real and that what is making you sick is imagined.
They ignore your pain.
Also, imagine being that person’s loved one…lost and confused and in desperate need of help.
How would your husband or wife or your children or parents cope if you were to suddenly drop out of living and life, not just for a day or two, but for months and years?
How would they manage? And how would they feel?
Wouldn’t they feel angry and isolated having to deal with their sick loved one, having to run the family home and work?
What if no-one cared enough or had time to reach out and say “let me help you!”
What if no-one understood how bad it really gets behind those four walls.
Imagine this happening to someone you love.
What would you do if this were you or your family or friends?
This life with Severe ME…It completely halts normal lives and it robs families of their loved ones.
It ends relationships and leaves people, those who are sick or those who are caring, in such isolation and fear.
If you can imagine how this would feel or you are already feeling and living this non life then please do one thing today to help raise awareness for Severe ME.
You can learn more here
Severe ME Awareness and Remembrance Day: