What Lupus Feels Like

I've been meaning to write about this for a while, but had other (more fun) topics to discuss. I mean, who really wants to hear what lupus feels like? But I want to get it down for posterity.(Usually, we call them Katie and Jackson, but posterity will work fine for now.) It would save me a lot of grief if I had something like this that my mom had written for me. So... here goes!

I've read enough to learn that lupus affects everyone differently. And from my own personal experience so far, I can tell you that it feels different every day. Some days, I can roll out of bed with only minor difficulty. Other days, I flashback to the way I felt immediately after my c-sections. I remember how gingerly I had to roll onto my side, and use my arms to push myself up because my ab and back muscles were so tender. It's like that with lupus, except I can't use my arms very well in the morning. I have very little strength to push my torso off the bed, so I kind of just loll out of bed. Like a sloth.

I'm swollen too. Again, kind of like the last month of pregnancy when I felt like my skin was going to burst. The good news is that I don't feel like that all over anymore, like I did when I was pregnant. Now I feel that way mostly in my hands and wrists. That's not so bad.

You know that stiffness you get in your elbow and wrists after someone's given you their baby to hold, and they don't come back to get the baby for about an hour? That's how my elbows, forearms and wrists feel lately. The worst part is that I keep thinking that if I just move my arm and shake it out a bit, the pain and stiffness will go away. No such luck. No amount of shaking makes it go away.

It hurts to hand write. My hands can't grip as tightly anymore, and my fingers cramp up. Actually, the finger cramps probably aren't lupus related because they've been feeling that way when I handwrite for the last five or seven years. (I think I'm out of handwriting practice because I type so much more.) And speaking of my hands, I have always had tiny little fingers. My wedding ring is size 4 3/4. Seriously. But guess what? There are no diamonds on my fingers now. I can't get my rings back on my fingers because they're so swollen. Even my biggest diamond ring that I inherited from Mom/Grandmother is too small for my left ring finger. Previously, it would fly off that finger if I ever wore it there. Now I can't even get it on. I've been wearing a silver "rolling ring" instead, because I can roll it off and on my finger even if I'm extra swollen.

One of the things that surprises me most every morning is how achy it feels to put lotion on my body. I have always had the habit of putting lotion on my legs, arms and shoulders after I shower. But in the morning, it's hard to straighten my fingers enough to rub the lotion in to my skin. I can mostly straighten my fingers out, but not to the full extent that it takes to really rub lotion onto myself. It's odd to me that lotion application would be so annoying.

I also put lotion on my hands before bed (and sometimes wear gloves) to help the skin cracks from the Raynaud's Syndrome heal. Have you ever heard someone put lotion on? For me, it's not the lotion that's noisy. It's my wrists. They keep cracking over and over, every time I rub. It's not painful, just weird that I'm so noisy.

Have you ever thrown your arm out? I used to do it sometimes in high school when I played softball. I overused my arm, and it would ache later that night and the next day. That's how my shoulders feel now. And this past weekend, I had a lot of the bone achiness that I used to feel in my collarbones (which I broke three times as a child) - the same kind of achiness that people attribute to, "There's a storm coming. I can feel it in my bones." Do you know what that feels like?

I tried to describe to Dan what I feel like. The best thing I could come up with is this: you know how your knuckles or back or neck or foot feels when it needs to be popped? How it kind of aches a bit, but if you just pop it hard it'll feel fine? That's how the majority of my joints feel all day. Some days don't feel so "poppable," but other days I am creaky and achy and in need of a good crack. The rub is that even when I do get that crack (like if I try to pop my knuckles), it doesn't make that feeling go away. Hmph.

So, there you go. The noisy, achy, poppy, swollen truth. I can tell you were enthralled.

In talking to Dan about my symptoms last night, the thing that upsets me the most (besides just feeling lousy), is the knowledge that my mom felt like this ALL. THE. TIME. For years. And I had no idea. What's worse, I wasn't even very sympathetic towards her. You have no idea the shame and regret I feel now.