Yesterday, Kelly posted about Pain Scales over at RAWarrior.com and I hope to talk with my wife about Kelly’s post and maybe together we will have some thoughts specifically about her post in the future. However, her post made me connect a few things in this dull head of mine. Mostly because of a
conversation, argument, discussion that my wife, Kim, and I had on Tuesday. I want to share that conversation, as best as I remember it, and then add my thoughts on what I’ve learned. Please take this in the serious/light-hearted manner in which it was written.
Kim has been on MTX for her RAD for just over 4 weeks now. She is also on Prednisone and Plaquinal and the meds seem to be kicking in a little bit, at least some days it seems that way. She had 3 or 4 days last week where she woke in the mornings feeling better than she’s felt in months. Fingers still stiff and swollen, but not as bad. Then without warning, a couple of days where she was back to how she has been feeling. No surprise. We’ve done our research and know this is a part of RAD. So that’s a little setting for our conversation that took place on Tuesday. (Conversation quotes are not verbatim and I may be casting myself in a slightly more favorable light than I deserve.)
What do you get when two very stubborn people marry and have children? A child that combines the stubbornness of both all into one package. Kim’s parents are both stubborn. Most of the time I don’t mind my wife’s familial character trait. The fact is, it was one of the things that most attracted me to her when we were dating. She knew what she wanted and she wasn’t going to be dissuaded from her goals. Unfortunately, sometime even our best attributes can become our nemesis.
Tuesday afternoon Kim and I did some cleaning in the house. I vacuumed carpets since her hands can’t push the big vacuum while she ran a little cordless vacuum on the hardwood floors. At one point I walked into one of the rooms and started cleaning something while Kim was trying to empty out the filter and clean out the dust receptacle of the little vacuum. She was struggling to put it back together. After a little bit, she shoved everything at me and walked out of the room without saying anything. We finished the floors, got some other things cleaned up, and I grabbed some lunch while Kim dipped Snickerdoodle cookies into the cinnamon sugar mix. While I was eating I notice that she was trying to move a cushioned chef mat that we keep in the kitchen with her feet. All while attempting to keep the cookie dipping process going.
I ask her, “Do you need some help?”
“Not now”, she snaps back at me. (OK, I did something wrong, but I don’t know what.)
“I’m sorry”, I replied. “I didn’t notice you needed help until you had already gotten the mat where you wanted it. I was right here. Why didn’t you ask for help if you needed it?”
A small glare is thrown in my direction. “It’s like when you saw me struggling with the vacuum”, Kim says, “You didn’t help until I gave it to you.”
“But I was right in the other room. Why didn’t you ask for help?” I ask again. (So far things are a little tense, but not too bad. Plus, now it’s starting to click. The vacuum thingy almost an hour ago.)
She looks at me, “You know my hands hurt the worst so why wouldn’t you have offered to help? You know that my fingers can’t do what I was doing.” (At this point I also realize that she’s not necessarily upset with me. She’s upset because she can’t do what she wants to be doing. Remember the stubbornness trait?)
“But when I asked you when you woke up this morning how you felt, you said you felt fine. Now I’m confused. Do you feel fine or do you hurt?”
“I always hurt”, she says. (OK. I knew that, but we really have to figure out how to communicate with each other and live with the new third wheel in our marriage, RAD.)
At this point I decide to take the plunge. “So do you want me to help you or not?”
“Yes. When I hurt and can’t do something then I need you to help”, Kim replies.
“OK. I’m willing to do that, but I need you to be honest with me about how you feel. Because I don’t know what the pain feels like. I don’t have RAD. You do. I can read articles about what it feels like, but I don’t actually know. And while I can often tell you are telling a small lie when you say, ‘I’m fine’, I don’t always know and I need you to tell me.” Mentally I decide to double down and lay all the cards out. “Also, you often put me in a catch-22. There are things that I can do for you that you don’t want me to do because you need to do them so you can hold onto your independence. I’m fine with that, but unless you tell me how you are feeling or what those things are then I struggle to determine if you are doing something because you need your independence or if you are doing something because you are stubborn. I need a real assessment of what your pain level is. I also need you to set your pride and stubbornness aside for me and ask for help when you need it.”
And with that, our conversation ended peacefully.
My point in this post is that even in marriage the RAD Pain Scales are a point of contention. Most days when I ask Kim how she is feeling she answers, “Fine.” Unless I press her on it, that would be the extent of her response. Now I know that is not the case. I can usually tell when she’s having a really bad day versus just a bad day. Yet her answer remains the same most of the time. So three weeks ago, for example, when she was feeling pretty bad she used the same terminology to describe her pain as she did last week when she was feeling better. I know that part of that is the fact that she has lived with pain for the last 4 plus years on an hourly basis. “Fine” becomes the new normal and what for me would be a 5 on the pain scale is for her a zero. Not because she doesn’t hurt. No. But rather because she has grown as accustomed to living with pain as one can and living with pain has become her new normal. Pain only starts to become a “big issue” for her when it starts to move several points beyond her normal range. After all, how does one measure pain when they can’t remember what it felt like to not have any?
So we learn from our discussion and we move on and try to communicate better. I’m trying to learn what I need to do to help. She’s learning how to set aside her stubbornness and ask for help. Together, we are learning to dance to a new unfamiliar tune in our marriage.