Things Unsaid
We just recently returned from a little vacation in Lake Tahoe. It’s always wonderful to get away for a while, but traveling can be so difficult.
Between the altitude, the bad air quality, and the amount of sun, my wife had a really hard time on the trip. I don’t think I dealt with it very well, either. I try and stay positive, but I don’t think I did a very good job on this trip. It’s so frustrating to see someone you love be miserable.
We were at the lake, and I was out in the very very cold water while the kids were playing on the beach, and Jenny had to stay covered up in the quickly fading shade. I knew she would much rather be out in the lake, and it just made me sad to see her all alone with her big hat, reading a book. She shouldn’t really have been out there at all, but she knew how much it meant to the kids to go to the beach. I just don’t know what to say in times like that, and so I don’t say anything.
Honey, I’m so sorry that you have a really stupid disease.
I can’t tell you how many times I’ve said that to her. I don’t know what else to say.
Jeff, I can really sympathize with you on this one. It is incredibly frustrating to watch someone you love have such a difficult time. I have to admit that there are times that I let the frustration get the better of me.
Hi Jeff,
I can understand how your wife feels, it seems the sun has now become our enemy. We lupies just can’t win at all. I can understand how hard it for you dealing with your wife’s lupus. It got its way of kicking us the __ all the way around.
Jeff, I’m so glad to hear your family had a vacation. I wish it had been a more carefree one for you and your wife. It’s awfully hard to stay positive when the health problems are so relentless. Hope you won’t beat yourselves up any more over that.
We also just got back from a long road trip. Driving for hours through the high desert reminded me of your blog about in-car sun exposure problems. You mentioned being put off by the expense of tinted windows. Have you ever tried “off-label” use of a windshield sunshade? We’ve used one for years and recently figured out it can also be used as a sort of passenger-side “sunbrella.” The type we use has a reflective silver facing on one side (it’s the “Heatshield” brand). It’s light weight and heat-insulating as well. Since it’s stiff, you can unroll just enough to block the sun from the front or side and still enjoy plenty of air circulation. The notch that normally fits around the rear-view mirror when the car is parked comes in handy for fitting around the shoulder belt anchor–perfect for when the sun is attacking from over your shoulder. Even with the shield in front of your knees, air conditioning can still flow freely up from around your feet to keep the shaded area cool.
Of course you have to be careful not to let it reflect sun into the driver’s eyes or block his view.
It’s a little awkward, but it makes all the difference for me. And it’s probably less expensive than tinting.
I wish sun shirts, hats and sunscreen were this effective. But even when I use them all together they’re never enough, at least not for long. It must be that some sun gets through, or else there’s reflective UV radiation from surrounding surfaces.
It’s awful spending beautiful, long summer days indoors. I miss trail riding a lot.
Thanks always & best wishes,
Wendy
I really love reading your blog. I really find it amazing how much you love your wife. My boyfriend of a year and a half just broke up with me 3 weeks ago. Too many problems for him to handle. I do not have lupus, I have fibromyalgia. I think the mental issues fibro brings are the hardest for him. He seemed to live for “the good days”, which, unfortunately, can be few and far between sometimes. He said he accepted me the way I was, but he didn’t. How do you accept your wife just as she is? Do you ever wonder if you can do it anymore?
I wish I could say that I was perfect, but I’m far from it. I accept my wife as she is because that’s the reality of the situation, but it doesn’t mean I don’t try and change what she does.
I don’t really wonder about whether or not I can do it anymore. I choose to do it, and that’s it. I will continue to make it work. That doesn’t mean it doesn’t aggravate me or stress me out. It certainly does.
I just want to make sure that people know the reality of the situation for my wife and myself. It’s far from perfect, but we do our best because we love each other and we love our kids.