Also, I do what I can to mask symptoms, which doesn't help people understand what I'm going through either. On a day when I am having difficulty moving, I may support myself with a hand on the wall as I walk, but only if I think no one is looking. If I am teaching a class or having a conversation, sometimes I lose a word or stutter or say knee when I mean elbow. During these instances, I make a joke and we laugh it off. If I'm tired (and it shows), a little Eye Creme goes a long way. Sometimes, though, symptoms are hard to hide. Like when I am in the middle of a conversation and I forget what I was talking about...mid-sentence. Or when I can't remember a person's name that I definitely should remember. Or when I can't breathe simply because I walked from one room to the other or bent down to pick something up. But, it's all good. At least I don't look sick!
Now, I'm out and about a lot. Between teaching yoga classes, taking my son to school, doctor's appointments, visiting friends and family, I interact with a lot of people each day. Often, someone will ask: "how are you?" To me this question presents a dilemma. I don't want to lie, but I also don't want to unload on anyone with the multitude of bad things that are happening in my body at that particular moment. Do they really want to know? Are they asking to be polite? Either way, what I'm going through is no fun, so hearing about it can't be much fun either. However, I could talk about Lyme for hours. HOURS. So, listener beware! Asking a simple question like "how are you?" can unleash an hour-long depressing rant about the politics of this controversial disease, how I can't eat anything I want to eat and my fears about my children's future as they fight this disease. That's what's weighing on my heart right now, so I can't help myself! Hmmmm. Maybe we should think of a safe word. You know, so in case I ramble on and on and you just want me to shut up. Or how about you just make up some excuse to get away...as quickly as possible...like your house is on fire or you just saw the bat signal.
I've had Lyme for a long, long time, so my 'normal' is anything but. To me, though, it's life. I felt even half as bad as I do each day, I would think I was cured (forget the fact that there is no cure for Chronic Lyme!) Any relief from symptoms would be a tremendous gift. Ultimately, though, what we're working towards is the day when I don't look sick because...I'm not!