This illness has been a very weird long poker game. There have been many times where my life has depended on exactly how well I bluffed my way through it.
I touched upon this kind of idea in my blog
Masks. So often we are driven to wear the masks we do. However if we can gain enough mastery to control the masks, to match the game to circumstances, I think that is very empowering.
I too don't drive. For me to drive would be like drinking a bottle of tequila then getting behind the wheel. Indeed most drunk people might be safer drivers.
So much of what I do too is a bluff. People simply do not see the issues, and as a result questions never arise and I can get on with doing things. However there are times when this causes conflict, because when someone does see a problem, but doesn't see the cause, they speculate/guess about the cause - and usually get it wrong. In part this is because the guess usually results in stereotype.
So the ignorance of ME and our issues leads to problems in recognition and reasonable treatment, but it also empowers us in that we can sometimes (at least for mild and moderate patients) get through without running into discrimination. I don't know how right that is for those more severely affected. If I were currently playing the ME card here in hospital, I suspect things would be much harder for me.
Yet by not raising the ME issue more often I am playing into current views based on ignorance and discrimination. When placed in vulnerable position its much harder to act. Instead I have been focussing on issues and carefully mentioning research that is based on strong evidence - one example is I have discussed Amy Yasko's research in autism and methylation, and discussed the issues on methylation and folic acid. I even mentioned Rich a few times. Other research I have discussed involved orthostatic intolerance. On an issue by issue basis, sticking to the stronger research, its easier to gain ground.
There are people here who think I have good memory (episodic, not semantic). Others think I am just unfit etc. Some don't realize I have major sleep issues. Their views are on what they see. That narrow slice of reality seems to largely define how people react. Hmmmmm .... this hospital is my laboratory I guess. It even came up during blood pressure testing - I was tested during eating lunch, and wanted to know what the results were as it would give me a clue on how much blood was being diverted to the GI tract.
So far my periods of fog, which are less common on resveratrol, do not correlate with regular blood pressure or blood glucose issues. My guess is its more about brain vasoconstriction. Doh, I don't want to keep rambling, I can do it all day.