“How are you doing Robert, y’know, with your illness?” is a question that comes up every time I haven’t spoken to someone in a little while. Mostly I just reply “yeah, ups and downs, but fine” because I don’t have time to explain fully. Truthfully the answer is more complex and varies a lot.
At my worst, people don’t get a chance to ask how I am because they won’t see me. At the lowest low of a flare up, when I have constant diarrhea filled with blood, no appetite, and clinging to the walls as I walk because I’m so weak, even just having a bath is exhausting. When it’s this bad, I can’t leave the house.
At the best times, like recently, I can almost forget I have the illness. I’m not on the wonderful and evil steroids. I take my daily meds, and that’s about it. I can eat more or less what I like, I’m always a little tired but it’s something I’m used to by now and can work around. It’s the closest to normal I can hope for.
But it never goes away. The longest I’ve gone, so far, without a flare up is 6 months. I’m hoping to beat that record this time round, but I’ve accepted that it’s just something that I have to live with.