Some of these blows happen daily at any time, and some are less frequent but can be extreme. The scope of what's possible, what I can do or communicate or find, narrows.
Here is what often is or seems impossible.
- Showering. This often feels like a massive task involving too much of my body and too many steps. I'm in a better place with that now--music has helped. I have to reach out of the shower to find the right song, whatever that may be. And I may wash my hair twice because I'm not paying attention to what I have to do.
- Eating. I don't feel hunger pains often. When I do, I'm usually already sluggish and dizzy. Preparing food is hard, but the worst part is trying to find something that seems edible. I skip meals. Then, on rare occasions, I feel completely famished and much more motivated to eat.
- Putting on makeup. I love makeup, and I love playing with it. But some days, I can barely put on my foundation. If I have even a little glitter around my eyes, you can know that I am trying. But eyeshadow and eyeliner are the real tests. On a good day, you'll see lipstick, blush, and all-over sparkle.
- Moving. When my symptoms are high, I sometimes experience what I call the Tin Man. I'm suddenly unable to move. I can usually move my eyes, but I can't speak or get out of an uncomfortable position. Josh will sometimes rearrange my neck or my legs for me. The Tin Man seems to leave on its own eventually. Josh thought the name meant one of us is heartless, but it's about not having enough oil, and I haven't discovered much about the oil I need.
- Gathering enough affection. Josh and I are pretty affectionate. Oliver is pretty dedicated to his own space. Bruce gives good hugs. Sometimes, I feel so hungry for love in any of the languages.
- Being with several or more people, even if I love them and they love me. I need an escape hatch. With breaks, I usually do okay. Most family is aware of that.
- Cleaning. I often don't notice what needs to happen, or the awareness almost paralyzes me. I try to do a little each day--some laundry, the dishes, picking up toys, tidying up some of my clutter. Josh takes over a lot of the work. I am trying, and I hope to improve.
- Feeling fully comfortable in my body again. I have little hope for weight loss; I'm just trying not to gain more.
- Life without meds. This is probably just true--I will take varying medications for the rest of my life. I may deal with changing meds and side effects every couple of months.
- Doing anything but sleep. My body and mind cry out for rest or escape.
- Reading. The resistance can get strong. I believe I can't do it, and I know I won't retain much anyway. But of course, reading is one of the greatest tethers tying me to Earth.
- Writing product. Luckily, I've been able to keep up writing practice most days for a long time. But I don't know if or when I'll write a product (story, poem, essay) let alone submit it.
- Living without dread. My brain seems always able to find something to latch onto. The absence of work is a massive help, and I believe I'm so much better now that I'm not working. Still, my brain wants to overload and send me fleeing or fighting nothing.
- Understanding my illness and myself. I've read books and articles and studies. I need to learn to ask questions of my therapist. How do I sort my feelings, thoughts, and actions? Do answers exist that I simply haven't come across yet? I know I need to learn more.
