People ask me a lot how I'm doing. How WH is doing. It's always hard to know how to answer this question, because the truth is: not good.Sure, we have good days and good moments, but mostly we are struggling mightily every day. And when someone asks, "How are you?" it's always hard to know if they are asking because that's what people do, or if they really want to know. I have grown to hate this question. I hate having to think about how I am, how we are, and then having to answer it. Mostly I just say "fine," and force a smile. But I can't remember the last time that, "I'm fine" was the truth. Because I'm not really fine.
I haven't had a hug from my husband in months. My clothes are so contaminated, and his sensitivity so severe, that me getting close to him makes him feel worse. I can remember what it feels like to hug. And that's what I have to think about when I go to bed at night, without him. We are alone together . . .
That whole "Netflix and chill" thing? Yeah, we can't do that. My husband lives in a hotel, and I can't go there (see above, re contamination). Sitting on the couch together watching a movie and chilling out . . . I can't think of anything closer to heaven.
We eat out all the time. Sounds luxurious, right? It isn't. We have no choice. It's the only way we are able to see each other. If I never eat in a restaurant again, it will be just fine with me. Cooking is a simple pleasure that I miss more than I realized I would. I long to cook for us both and enjoy a quiet meal, just the two of us, no waiters, "ambiance," or other people around.
Every day, I look at the weather forecast with trepidation. I may be the only one thankful for the unseasonably warm fall we are having, because my husband can't find a coat. The fabrics exacerbate his symptoms (think about it...most of our clothes are imported, often by boat. Boats are prime breeding grounds for -- you guessed it -- mold). Can you imagine not being able to find clothes to wear, or a warm coat? Eventually our luck will run out and the weather will turn, and he will have no warm clothes. This is our reality and I am heartbroken by it daily.
Our lives are consumed with worry. Will it get cold tonight? Will the place we've chosen to eat have put their dusty Christmas decorations out yet? Will the hotel rates fluctuate higher this week? Will the doctor call back? Will the contamination spread? Will the pain be bearable today? It's like a chess match, constantly, and you never get to stop thinking, stop worrying, stop moving the complicated pieces around the board.
I don't mean this as a pity party. This is our reality. We are surviving it day by day. And we are finding bright spots. We are surrounded by unwavering, unbelievable love and support. There are rays of light in all of this, but there are also a lot of clouds. So, just know if you ask me how I'm doing, even if I say, "I'm fine," I'm not.
If you would like to learn more about we're going through or help us as we battle this monster, please visit our YouCaring website.
For more information about environmental illness, mold, and mycotoxin poisoning, read here, here, and here, and watch video here.