Danni,
I'm sorry for what you're going through, but it's comforting to know that someone else is in a similar boat. I get frustrated with the question, "What's wrong?" from people who already know I'm sick. I want to reply, "The same thing that was wrong yesterday!" I try to explain my behavior to my kids and say, "I'm just tired today." Or something else generic so they don't worry. I'm a divorced mother of two, so I know it would terrify them if they felt something was seriously wrong. I've lost friends as well. I don't have the energy to maintain relationships. When you feel like crap all of the time, it wears you down and it gets hard to care about their lives. My mother created a serious rift between us as well. I was speaking to her on the phone (she lives in Washington State as well) a couple of weeks ago and said that I wasn't feeling well that day. She asked me what was wrong and I told her that it was the same condition that I've had for two years. Remember? And she brushed it off. I'm not looking for sympathy all of the time at all (sympathy is not worth the trade of feeling like this by any means) but some empathy and consideration would have been nice from my own mother. Without sounding like I'm complaining too much, I wanted you to know that you are not alone with your struggles with family and friends. A couple of years ago, I was making the drive from PA to AL straight through(which is like, 18 hours, I think) twice a year. I won't drive more than two hours for ANYTHING now. I spent a lot of time trying to convince people that I'm not crazy-including doctors. But what are we to do? We KNOW it's real. Up until a few months ago, I was running 10-15 miles per week and now I can't even run around the block! Of course it's real. I agree with you about being open-minded about what is okay and what isn't. Only we really understand what we are going through and what we are capable of doing and tolerating. I think we have both given up on trying to convince people of our discomfort. If your husband is anything like my boyfriend, your outlet may not be with him, either (I don't think that makes them bad, as mine does try, he just isn't capable of that level of understanding). I hope that you have someone else that is truly compassionate and allows you to vent on them. If not, please take comfort in knowing you are not by yourself and you can probably message me (although I don't know how) on here if you feel like there is no one else you can talk to. On another note, have you found anything that helps you?
Thank you, Jaminhealth, for your input. I'll look into it.