I have a couple of hereditary diseases, both of which are sunlight sensitive. One is acute hereditary coproporphyria, and the other is lupus. If you follow The Musicks In Japan podcast, or read my mother’s blog on the website, then you’ve probably already heard about her experience. I don’t have it as bad as she does, and for a long time I wasn’t even aware of the extent to which they impacted me. For those of you who don’t know much about these diseases, the short, super simplified version is I’m allergic to sunlight and iron. The sun hitting my skin is a light to mild burning sensation, I regularly suffer from muscle inflammation, and sometimes my muscles spasm and/or headaches. When I was younger, we didn’t know about any of these things being tied to hereditary diseases, and so I’ve had to learn the right techniques for good and proper self-care after having already built my self-care habits. It has been a struggle to reshape how I naturally think and operate in the world to accommodate my physical health, but I believe I’ve recently started getting the hag of it. The main things that I consider are how often and when I go out, what food I eat, and how often I take anti-inflammatory medicine. Regulating how often I go out, and what I’m doing when I do, is significant towards how much sun exposure I get. The less time I actually spend outside, the better. This means a lot of the activities I do are indoors. To limit how often I go out, I’ve gone so far as to take advantage of the home delivery that Aeon offers. Old me would have never thought of it, since there are several convenience stores and grocery stores within easy biking / driving distance. An added advantage to doing things this way is also being able to see what food isn’t available without being disappointed after traveling to get it. Instead, it’s easy to arrange for a replacement. No grape juice? Okay, orange juice. No extra walking. Which means less pressure on my inflamed leg joints and muscles. When I still lived with my parents, and for a while after I lived alone, I simply refused to take any medication whatsoever – even if it was something as simple as Alleve (naproxen sodium). Nowadays, it’s usually not a matter of whether I’m going to take any. Instead, it’s a decision about whether to only take some at night or to take extra in the morning. Despite having had to make changes in my life, I don’t feel as though I’ve lost very much form these diseases. In many ways, the lifestyle suits me. It promotes calmer excursions and gives me an easy excuse to not go to the beach. Managing it still takes up more head space than I would like to admit, but I’m sure everyone has things like that. The key is not letting it get me down. Which I do with aplomb.