This week has been especially rough. I've been in a flare pretty much since January 2017, with fluctuations in disease activity. I'm currently on my regular lupus meds and an added course of prednisone. I hate prednisone. It almost always makes me feel worse before better. Again, I am grateful that so far, I've only had to add prednisone. The other drugs are worse. But, I still hate it. I hate the sweats. How it affects my appetite. My sleep (which is messed up anyways, and not only because my husband snores loud enough to shake the walls). My mood (GROWL!). It makes my hands shake and muscles weaker. But, I'm hopeful that this dose will be the kick that knocks my disease back to where I can function like a *normal* human again. Fingers *painfully* crossed.
This isn't a sympathy post. It's an awareness post. Because if you saw me this week, I probably looked and acted just fine in front of you. I smiled and tried to move like nothing was bothering me. I may not have spoken as much as I usually do, but I was polite. Lupus affects everyone differently. And it can affect you in different ways on different days. Usually I deal very well with it. This last week, though? I hate what lupus has cost me this week.
It's cost me time. And honestly, when you've been diagnosed with a life-threatening disease at age 12, you never feel like you have enough of that. I imagine it's more intense than a typical mid-life crisis. You always hear the clock ticking. And every day that you wake up and breathe, you smile. Then you assess. What exactly can I accomplish today? Can I do the things I need to do? Can I do the things I want to do? If I do these things, will I have any energy left for tomorrow?
This week alone, lupus has cost me time with family. Time with my husband. We had the entire house to ourselves last night, and I went to bed. Time with friends. A very special friend asked me to join her for lunch, and I couldn't make it out of the house. It cost me time awake. I had tremendous difficulty getting out of bed every day this week and I had to nap four of the five days. And by "had to nap," I mean it. The fatigue that comes with lupus is crushing. After 33 years, that's the best word I've found for it. It just crushes you. Your mind, your body, your thoughts.
I needed to make two appointments this week. I made them. But, that's about all I've done this entire week. I wanted to pick grapes at a local vineyard and make grape jelly. I wanted to bake some things for the house, to send to the boy at college, and deliver to the people at the high school who work with Thomas. I wanted to walk the neighborhood. I wanted to get quotes out for clients. I wanted to wash my hair more than once. I wanted to shave my legs. I wanted to move without my arms feeling like each weighs 100 pounds. I wanted to breathe without my chest feeling like it's going to burst. I wanted to walk without feeling like I'm dragging a freight train. I wanted to sit, stand, lie down, without constant pain. I wanted to sleep through the night. I wanted to stay awake through the day. Lupus has had other plans for me. Usually I can deal with it. This week, it's made me angry and bitter. Primarily because I don't know how I'm going to feel tomorrow.
So, what do I do now? How do I make this better? I'm a pro at dealing with this shit. I manage. I adjust. I get angry. I let the anger go. I allow myself the rest my body needs. As selfish as it seems. I give up the time to hopefully better enjoy the time I do have left. Don't think about that too much, though, because it can get depressing real quick.
I'm grateful. That I have family and friends who understand (or try to). That I have a bed to lie down on and a dog who follows my every move, especially when I'm not well. That I have healthcare. That my doctor listens to me. That I can see, hear (kind of - right, Thomas?), smell, taste, touch, and delight in all the wonders of the world around me. Chronic, life-threatening illness offers things that some people miss. I feel badly for them.
Naptime.
