I’ve been on the struggle bus so long I don’t know any other way. I could say the past few weeks have been particularly hard since I’ve been trying to adjust to a new medication. I could say the past few years have been a beast since my health just sort of gave up during the stress of 2020. I could even say the past few decades since my initial diagnosis of rheumatoid arthritis have been no picnic. It is what it is, though, and I’m just over here trying to figure out how to look like I am still marginally functional.
It’s mid-morning as I write this. I’ve done what amounts to a lot for me so far, but it would just be a normal morning routine, accomplished in a fraction of the time, for someone who isn’t sick. I got up around 7, fed the animals and coffeed the people. I put a load of laundry in the washer. I took the overfilled trash bag out to the can. I changed the air filter I’ve been meaning to change for the past few weeks. Now I’m sitting in bed with my laptop hoping to come up with the energy to cook lunch in a little bit. If I have a really good day, I will be able to cook lunch, load the dish washer, and run another load load of laundry in the afternoon. Maybe I will even manage to water some plants.
I’m not complaining. After 30 years with a disease that has a pretty impressive track record for disabling its host, I am doing pretty well. I’m still able to walk around. I’m still able to make the coffee and do the laundry and bathe and dress myself. I’m still able to drive and cook and so forth, although I do keep a stool in the kitchen for those moments when I realize I have to sit down while I’m in the middle of fixing lunch.
I used the word host in the previous paragraph as if I am dealing with a foreign substance, but I’m not. The call is coming from inside the house. The disease is just part of how my body functions; it’s how my immune system is wired. If you don’t want to be around someone who drags around, we don’t have much to say to one another because this is the only body I have. I’m the only person I have to offer to any given relationship. It takes more than $60,000 a year in medications and doctor appointments to keep me going as well I as I am. There’s not much more I can do.
I’m grateful those doctors and medications exist. I’m grateful I’m having a pretty good day so far. I’m grateful that I have some fresh vegetables from my brother’s garden that are motivating me to want to cook lunch rather than order delivery. I’m grateful delivery is an option.
People talk about living day-to-day, but with chronic illness you live minute-to-minute. You get up and start a task without knowing whether you will be able to finish it. I have a love/hate relationship with to-lists and planners. I will write a to-do list for several days in a row and then get mad at myself when I’m just copying over the same things from day to day. That’s okay, though. That’s just how it is.
I’ve just spent about 20 minutes writing this. In another 20 or so, I’ll get up and check on the laundry and try to get myself organized for working on lunch. This is a day in the life on the struggle bus, but I’m okay–kind of, sort of, mostly, or something like that.
