Why severe ME relapses are horrific
Although death is a real possibility with a trip out of the house or other overexertion, most often death will not occur. A relapse is a certainty, however, if someone with severe M.E. is overexerted. This should be taken just as seriously as the possibility of death; the suffering caused by a relapse in severe M.E. patients can seem crueller than death.
While it maybe seem unkind to compare the experience of severe M.E. to death, can you imagine what it is like to be so ill and disabled, to be in what feels like 10/10 pain much of the time, and then to suddenly have your pain and suffering levels DOUBLE just because of one day's or one week's 'activity.'
Can you imagine what it's like to lose years of sacrifice and discipline, and slow improvement hard-won through intensive rest, in just one day or one week? To have all your ridiculously hard work suddenly count for absolutely nothing? To not only lose the small gains you made, but to end up even worse off than before you started?
Can you imagine being so severely ill and disabled that you had to spend 22 hours a day or more in a completely silent dark room, trying hard not to even think or move or feel very much lest you become far more ill. Imagine that all you had to look forward to, to focus on and cling to in your worst moments, was watching an hour of TV, listening to some quiet music occasionally, a half hour talking quietly to friends and family -- or your own children -- or using the computer (lying down) or a few minutes spent outside in the garden or playing with a beloved cat or dog.
Can you imagine losing the ability to do ANY of these things anymore suddenly, and having no respite or distraction from the agony-filled dark quiet room at all? Can you imagine this situation lasting months or even years, never knowing if things will ever even get back to how they used to be before the relapse, as bad as that was, let alone better?
M.E. can be more severe and disabling than almost any other disease there is. For those of us with severe M.E., the price that we pay for 'activity' is extreme and prolonged. Severe M.E. (which can be very severe indeed) can truly be a living death.
Please see the www.hfme.org site for more information.