Can't I Get What I Want? Sometimes....
Every so often it happens. I get really, really tired of life with rheumatoid arthritis. I stop being a good sport, if only in my mind, and start being resentful of the life I've been given. I don't want to live in pain, I don't want to take medications that help but also hurt me in ways I can't control, and I certainly don't want to limit the activities I do because of the disease. But, as the Rolling Stones have so famously said, "you can't always get what you want."
A few days ago I opened up to my husband Todd about how I was feeling. I told him that I knew the current biologic I was taking wasn't working as well as we had hoped. I told him that the options on the table for a new treatment plan did not excite me at all. I said that I didn't have the desire to explore alternative treatment ideas. His response was short, but powerful. He said, “ Kat, it sounds like you're giving up and we both know that's a dangerous road to travel.” My response was quick and a bit defensive. “ Well, I desperately want to get back on my bike so I'm not giving up yet.”
The next day I thought about that short conversation. Normally I hold in my hardest thoughts; instead of expressing them out loud I'll go into nature and think until I change my perspective in some way. I've found that there is always a new way to think about any situation and sometimes that's all it takes to change one's life. But lately I've been recovering from a major surgery and I haven't been able to leave the house without an escort. My independence is temporarily a thing of the past, and for the first time in my life with RA I see that the future may consist of more loss in my physical function. I've been numbing my feelings with youtube videos, and streaming television. I've been less active than I've ever been in my adult life and few of the things that soothe my soul have been available to me, since most of them are found outdoors. My strong mind and my strong will have faltered.
Giving up is easy, but it's not going to happen
I know what happens when I start give up, because it has happened in the past. I know that the signs are there. But what I know most is that giving up is not going to happen, I will not allow it because it goes against everything I am, so instead I need to pick myself up out of the emotional gutter I've found myself in and figure out the next step. I know that as long as I have a next step to take, I will keep moving in the right direction and eventually find my groove again.
Something I've learned well over the the 40+ years I've lived with JRA is that staying strong emotionally is the key to living well with this disease. I've also learned that RA is savage and relentless, and will tear down even the strongest among us. So when I hit an emotional rut, or lose my joy for an extended time, I give myself a break and I let myself feel the angst. I'm not a robot, I'm a person with wants, needs, desires, and it hurts when these things are thwarted by a demon of a disease. But, as Todd reminded me, this is a dangerous road to travel on for too long so once I recognize and feel my angst I make myself do something to change it.
There are the obvious choices, the ones that most mental health professionals would recommend. Reaching out and keeping connections with other people strong, journaling, reading inspirational books, seeking professional help- these are all really good ideas, and normally they would be some of the things that I would do to help me get out of my emotional rut. But right now, I'm not doing any of them. Instead I'm trying something new. I'm practicing radical self- honesty. I'm trying to be as honest as I possibly can with myself about my situation and how I feel about it so that I can finally accept the life I have instead of wishing for what will never be.
This sounds simple, and perhaps an obvious thing to do but it's not as easy as it sounds. I have a feeling you can relate. We live in the age of self-improvement; there are always new diets to try, new supplements that will change your life, and gurus to follow. Everyone I know is striving to improve something about themselves, or their physical body. And while I'm all in when it comes to the idea of positive change, it can lead to perpetual angst because you end up always striving, and seldom content. So when you're tired of striving, but your reality is less than perfect, is there a way to find contentment?
That's the question I've been answering for myself lately. I've been purposefully paying attention to the small things that make me smile. I've been telling myself that the answers will be there when I'm ready to hear them and take the next step in my treatment plan. I've made a point to be honest about how I'm feeling physically and emotionally by paying attention to my life as I live it.
And a surprising thing is happening; I'm finding that I'm becoming more grateful. It's not the kind of gratitude that makes me want to skip and sing songs all day, instead, as I pay attention to the things in my life that feel good I am reminded that my life, and my body, is doing just fine. The pain I'm feeling may stay with me, but much of life is what you make of it; when you don't have the physical or emotional reserves to take grand action, you can still make small shifts in order to make it through tough times.
And so, for now, I'm going to stick with what's working. I know going forward that I'll eventually find myself here again, feeling stuck and emotionally drained, and when that happens I'll have one more thing in my self-care toolbox. I'll have the appreciation that comes with paying attention to my life, and the ability to find the good things that come with the experience of living it.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?