Hi,
I got used to people around me no understanding what I put up with, that's fine I don't care what they think or know. I know what I think of myself and that is what I focus on. Doing what I think is right for me first. Until I can give them a day in my life they will never fully understand my life. I have enough to deal with and little time or patience trying to deal with anyone else's problem.
The toughest part is never being able to satisfy my rampant hunger and always seeing the food I love and can no longer touch. During the week I live on bread and cups of tea, the bread can be subbed out for boiled eggs for change. I try to get some cooked veg in the weekends with small portions of grilled chicken or fish, I can't touch greens anymore, it is usually a very small amount. It probably amounts to the same quantity as a regular hamburger per day. What the stomach will tolerate and the amount I can eat/ drink comfortably is very restricted. Typically I eat 4 slices of wholemeal bread and 6 cups of tea per day. With that I'm on a prescription multivitamin which keeps the body ticking over. I have resigned myself to this as being "normal" in order to cope with this disease. I never used to refuse to help anyone but now days the power of NO has left me with few real friends, you no the ones that don't alway want me to do things for them. I have had to learn to adapt to my new self and change the way I do somethings. I refuse to be helped prefering to do my damndest to get the job done myself despite the obvious aftermath of pain and suffering. I have been able to fight off the assertions my problems dates back to historical events in my life and inform those who would label me as psycho this is part of Dysautonomia, it causes these problems recognise it and learn from it.
My prognosis is it will get worse, there is no cure or treatment and we have done all we can, so get lost, in a polite way. I understand this as this is the nature of the beast I grapple with.
I feel like a puppet on a string never knowing which string is going to be jerked next.
Cheers