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Patty,
You are right about it being a drug from hell. Sometime back I felt I could not take it any more and I heard of a consultant (Palliative care) who would talk to me about alternatives so I went to see him and in a very short interview he determined (without much help from me) that I was more interested in quality fo life rather than quantity. He said that he believed that the Dex had had very little beneficial effect on me since the first couple of weeks had passed. He suggested that I stop taking it. I started to wean off it the next day which was a Saturday and lo and behold I started getting extreme pain in the head. I tried to live with it, looking for my pain threshold, or perhaps for more obscure and dark reasons like the guilt you referred to in your post.
By Sunday night I had to give up and took the usual 4mg of Dex. The pain subsided immediately; incontrovertible evidence in my mind that the Dex had been, and still was working to keep the fluid buid-up at bay despite what the Consultant thought.
It took me three days to recover from the trauma of experiencing such severe pain. Three days!! I cried (cried like a child who has been maliciously hurt) whenever I THOUGHT about the pain, or when someone said anything to remind me. It was phenomenal. I had no control over these tearful reactions. The Consultant apologized for having suggested I take that risk. I do not blame him; I was compliant with his suggestion. I see now that there are situations worse than living with daily doses of Dex. If I want a bit more time I need to toughen up (which I feel I have done now). But I am clear that I am NOT able to endure that pain, and there was not enough pain relief to make it bearable. Eccles
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