Do not mess us about

I presume, although I still do not know for certain, that this morning's meeting is not going ahead. No one has told me one way or the other.

Those "organizing" this meeting are paid to do just that; that is their job. And when they sit around the table with us, "they" are all receiving a lot more money than most of "us".

It is "us" though who have to deal every moment of every day and night with the screaming disease that is ME. My life is totally dominated by the person I care for being in constant pain and suffering from an overwhelming , never-ending galaxy of symptoms. This takes up all my time and often makes me very stressed indeed. So much so, that any additional stress, I take on, has to be weighed up very carefully indeed.

I have chosen to enter into this struggle for a biomedical service; I accept and will try to deal with the cost as best I can.

What I do not accept and find so maddening is the incompetence that I daily have to deal with, like being messed about over a meeting; that is far more devastating to me than anyone will ever know. I may be a lowly unpaid carer, but I do demand and expect respect.


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