Essential reading from Florence Nightingale

I have just been reading "Notes on Nursing", it contains extraordinary relevant insights for anyone who cares for someone with Severe ME, take this for example  :

"I think it is a very common error among the well to think that "with a little more self-control" the sick might, if they chose, "dismiss painful thoughts" which "aggravate their disease,"  Believe me, almost any sick person, who behaves decently well, exercises more self-control every moment of his day than you will ever know till you are sick yourself. Almost every step that crosses his room is painful to him; almost every thought that crosses his brain is painful to him: and if he can speak without being savage, and look without being unpleasant, he is exercising self-control."

What a challenge to those who believe that the person has just got to somehow pull themselves together ! Such ignorance. The courage it takes my wife, Linda, just to get through each moment of torment, lies way beyond my comprehension. Would I be so strong- after 21 years of never-ending agony ? I don't think so for a second.

Awareness, awareness, awareness, of the extent and depth of illness is so important in Severe/Very Severe ME :

The most important practical lesson that can be given to nurses is to teach them what to observe–how to observe–what symptoms indicate improvement–what the reverse–which are of importance–which are of none–which are the evidence of neglect–and of what kind of neglect.

You need to be so aware of how easily you can make things a lot worse just by your presence, never mind the chemicals, the movement, the noise you are likely to bring into a situation :

"I have often been surprised at the thoughtlessness, (resulting in cruelty, quite unintentionally) of friends or of doctors who will hold a long conversation just in the room or passage adjoining to the room of the patient, who is either every moment expecting them to come in, or who has just seen them, and knows they are talking about him. If he is an amiable patient, he will try to occupy his attention elsewhere and not to listen–and this makes matters worse–for the strain upon his attention and the effort he makes are so great that it is well if he is not worse for hours after. If it is a whispered conversation in the same room, then it is absolutely cruel; for it is impossible that the patient's attention should not be involuntarily strained to hear. Walking on tip-toe, doing any thing in the room very slowly, are injurious, for exactly the same reasons. A firm light quick step, a steady quick hand are the desiderata; not the slow, lingering, shuffling foot, the timid, uncertain touch. Slowness is not gentleness, though it is often mistaken for such: quickness, lightness, and gentleness are quite compatible.
Above all, you cannot always judge the seriousness or severity of illness by physical appearance, one of the many cruelties of Severe ME, is how "well" the person can look, despite their extreme bodily dysfunction, complex cognitive issues and widespread physical suffering  :

I have known patients dying of sheer pain, exhaustion, and want of sleep, from one of the most lingering and painful diseases known, preserve, till within a few days of death, not only the healthy colour of the cheek, but the mottled appearance of a robust child. And scores of times have I heard these unfortunate creatures assailed with, "I am glad to see you looking so well." "I see no reason why you should not live till ninety years of age." "Why don't you take a little more exercise and amusement," 

"Why don't you take a little more exercise and amusement," : how ironic that, here in the 21st Century , that "advice" is the sum total of official policy towards ME.

Florence Nightingale Notes on Nursing : http://digital.library.upenn.edu/women/nightingale/nursing/nursing.html