Happy Memorial Day Weekend! We here at chez OurSubLyme Life decided to not only participate in the typical Memorial Day barbecue, but also throw in attending a huge birthday party, and MOVING to boot! Woo hoo! Do we know how to fill a long weekend or what?!
After we got home the other night from the birthday party, and settled Sweetie in to bed, I could finally admit to Hubby that I was feeling... oh, I don't know... frustrated? is that the word?... about, well, Sweetie, I guess. Or her dealings with Lyme. Or I don't even know what. I just needed to talk.
I felt bad that, whenever Lyme Disease is brought up in conversation, I feel impassioned, excited almost. As if I could talk to someone forever about all that I've come to know about the disease. It's great that it's a subject I'm comfortable talking about and can share with people many things they themselves probably don't know. But isn't it also kind of like I'm taking advantage of Sweetie's unfortunate diagnosis? Like bad diagnosis = great topic of conversion for mom. It just doesn't seem right, or fair, to Sweetie.
Hubby said, no. It's just that it's a subject I've come to feel very strongly about. And sharing little known facts with people who otherwise may never know the severity of what Lyme could become is not a bad thing. Knowledge is power, and all that.
On the other hand, I felt like a fake or an imposter or something - first talking about all the truly terrible things that Lyme could mean for a person, and how terribly difficult it can be to "cure." Telling people about Sweetie's restrictive no grains/no sugars diet and the reasons behind it (grains and sugars are inflammatory)... and then looking off into the distance, along with those I am speaking with, to see our happy Sweetie playing and laughing and carrying on with all the other kids in attendance, not looking "sick" or otherwise afflicted in the least. "Yeah, right," they must be thinking. "Poor, poor Sweetie. What a shame she's so, so sick with this terrible Disease. Obviously, she's suffering a lot. Hah! Whatever."
Hubby assured me of the reason behind Sweetie's easy management of Lyme... because we've restricted her diet, have her on a strong antibiotic, and are helping her overwrought gut along with equally strong probiotics. Plus, she never was a terrible eater in the first place. Maybe if she had been, her original telling signs of infection (the cyclical vomiting) would have been something much, much worse. But it wasn't. She's good - no, great - because we're making sure she is! And that's a great thing!
I said I felt like I am always concerned with how Sweetie's feeling, and always frustrated that she never seems to tell us the truth. She's always great. But how can that be? But we can't possibly know exactly what she's feeling because we're not her and she's not fessing up. Maybe her "great" is only "eh," but she doesn't know any better because she's been "eh" for so long. Or maybe she actually is great! Who knows?! So frustrating.
Hubby said he figures that Sweetie actually, truly is great. In fact, he figures she's just as healthy on a day to day basis as any other kid. Maybe even more healthy because of her diet! Sure, she's apt to have bad days now and then. But so could any kid feel sick on any given day. So maybe Sweetie's reasons for her occasion down days are different than another kid's. Or maybe she really does just get a cold from time to time, for instance. He likens her dealings with Lyme Disease to those of a person with any other kind of "hidden" disease. Say, multiple sclerosis. The average person probably cannot tell if another person they meet has MS. And most likely, most of the time anyway, the person with MS actually does feel fine. But they have flairs where they do not. Which is Sweetie's situation as well. Most of the time, she's fine. Other times, she's feeling the effects of Lyme Disease.
Basically, it would do me some good to, more or less, forget about her Lyme on a daily basis, stop stressing that every little thing may or may not be related to it, and go on with life. When Sweetie really needs to ask us for help, when/if she's ever not feeling her best, she will definitely let us know about it. Chill the heck out.
I agreed that this would be a fabulous idea. For my own good, and for Sweetie's. She doesn't need me asking her all the time how she is (and over the last few weeks, I actually have really gotten better at this. Honestly!) She doesn't need to adopt a complex about how every little ache or pain or yucky feeling must obviously be related to Lyme. And, in fact, this is the total opposite of what we want for her, and for us. She may not use Lyme as an excuse! She already knows this, loud and clear. ("I'm too tired to move anything else." - "Why?" - "Because I have Lyme Disease!" - "Uh uh. Wrong. You may NOT use Lyme as an excuse to get out of doing things!" "Fine. I guess I could move one more box.") Nor does she need to live in fear of what Lyme could do to her. We intend to rid her of Lyme completely! You're fine, Sweetie. You'll be fine! If something is truly the matter as associated with Lyme, you will be able to tell the difference and we will respond accordingly. I promise.
After about an hour of talking, after I let it all out, after I was able to express all my frustrations and fears and wonderings and everything, I felt much better. Like I always do.
Talks with Hubby always make me feel better. They help me get a much better, more realistic view of the world. They chill me the heck out.
I needed that. I thank you, Hubby. And so does Sweetie.
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