I think the worst thing about having Lyme Disease is the loss of everything, I mean not just your health, but your friends, your job, your ability to do things with your kids. And then that results in guilt. Guilt for not being able to be there for people, or do things that they expect you to do. Of course, it is all compounded by the fact that we "look normal." So people expect us to "act" normal, even if inside we are crumbling.
The relentless, never ending, always changing symptoms just make it impossible to plan anything or know how long you can stay somewhere, even if you are able to get there. Just don't know when and what they will be when the symptoms appear. And some days the symptoms are tolerable, you can function with them, and others, they just make you completely dysfunctional. It's hard to "just be" on those days.
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