I spend a lot of my time waiting.

I’m currently waiting for the lymphocytes in my blood to get to 0.8 before I can start my fourth and final round with Mavenclad. My immune system has been wiped away three times now and I’m hoping that the next round does what it’s supposed to do. I’ve been through it three times now, so I know what to expect. Still though, I can feel Max Shadow a lot lately. It’s like he’s sitting somewhere behind me, always looking over my shoulder.

I have bloodwork every month. I wait for my results to see if this month will be the one, if I’m starting Mavenclad now. I’m always waiting for bloodwork results to find out what my body can tell me. I can hear Max Shadow laughing a lot, like he’s getting ready for something big, or just psyching me out. He knows that I’m always waiting and watching for new symptoms to show up, or my speech or typing get wonky.

There are some days where I don’t talk in the afternoons because my mouth belongs to Max. I’m waiting for my speech to be my own again. Other times, my legs don’t want to move when I want them to, or they go in the opposite direction that they were supposed to. I must stand and wait, holding onto my cane as I do so. Sometimes, I bide my time until the pain subsides before I do something because Max Shadow is having a hissy fit of some kind.

When I urinate, I spend a lot of time waiting, even when it feels like I must pee right away. It comes when it’s good and ready. Sometimes there is no issue. Other times, I resort to reading the labels on the things we have on the cabinet we have above the toilet. Epsom salts, candles, essential oils, face masks. I try to distract my mind so that urine will come free.

I know that a lot of time, Max Shadow and Cybil Paulsen are fighting. I mean, Cybil was there first and Max showed up and tried to take over. They tend to fight a lot when I’m lying in bed waiting for sleep. I can feel them moving up and down my back, dragging their fight down to my legs. I lie there and I wait for my body to quiet itself so that sleep can take me.

I spend a lot of my time waiting and that used to infuriate me. It still does, but I’ve learned to accept it most of the time even if I still find myself getting angry over the whole thing. This doesn’t happen very often, but I’m angry at what Cybil and Max do to my body

Still, there are times when I’m half asleep and it feels like the beginning all over again when I was waiting for Max Shadow to leave and eventually realizing that he wouldn’t leave, no matter how long I waited.

It’s always a relief when the waiting ends and I can regain control over my speech, movement, balance and body. It’s a relief to know that in that moment, the waiting is over, for now. I’ve come to realize that waiting is just part of the game living with a chronic illness and a disability. I just have to remember to cherish the time in between the waiting and remember that, though my life may be perfect, it’s mine to live.

I find my peace in that.