and all day long I've been thinking it's Thursday. Both are Lil Girl days, which can explain some of the confusion, but one comes later in the week, meaning that I have the possibility of four days off in a row. Today is not that day. Today is Tuesday, which means I have only tomorrow off, if I am lucky, and that does not seem like enough for me, right about now. Actually, right about now, I would like to take a 12 hour nap, but since it is not Tuesday circa 1998, that is so not going to happen. My fatigue lately (and, as always, I have to laugh at the utter uselessness of a word like "fatigue" to describe the exhaustion I am suffering from) is irrefutable, and I spend a lot of my time afraid that I might be sliding backwards into the hell of previous years. The times where I couldn't be around other people at all, because their presence - their noise, their smells, their movement - made me sicker. The times where I would spend weeks and months in bed, just unable to sit up at all, unable to roll over or drag myself to the bathroom. I know I am not there yet, but there are just more and more days when I can not accomplish anything - where turning on the computer takes up my allotted energy resource for the day, and then I have to wait 6 hours until I can write anything; where craving and caring and wishing for an extra ounce of oomph are the only things I manage to cross off my to do list; where trying to figure out what the hell Colbert is talking about is beyond me. Physical and mental 'fatigue' are just normal states for me, my new normal, and I hate it when any little thing gets worse, and I have to try to adjust every other damn thing. Laying around without stretching or moving at all makes the pain worse, but I don't have any stamina for moving or stretching. Not eating throws off my pill schedule, which can make the dizziness, or the pain, or the vertigo worse, but I need to have enough energy to make a food. To eat a food. To not throw up a food.
I feel ridiculous for even mentioning it right now, because it's only like a minuscule worsening of things: I still got a bunch of stuff accomplished this weekend, I watched Lil Girl today and made slice and bake cookies - I know it is not at horrible, scary levels yet. It's just that every little thing, every tiny slip backwards, reminds me that I am not in control of my body (not really, anyways), that even if I do every.single.thing. I know how to do to manage my diseases and prevent worsening, things can still happen. I can get viruses and my tonsils can swell up and prevent me from breathing. Thirteen consecutive nights without sleep can cause me to fall and bang my face on the corner of something hard, and my POTS gets worse. I can just do everything right, and still wind up sicker. And that is a bitter pill to swallow, no matter when I am swallowing it. (And then, I also realize that this is true for everybody, and I think I should get over myself. Bah. )