My RA sister and I were talking the other day. While we were commiserating, she noted that RA takes such a psychological toll on us as well as a physical one based on the choices you have to constantly make. We talked about how your energy reserves are now very precious and you cannot do everything you used to be able to do. So, you have to make choices. And, these choices are not always easy.
Here’s an analogy to explain my point…
You have a leaky bucket, but you have many flowers to water. Which flowers will you choose? You are losing water by the second, and you do not want your flowers to suffer. You have to choose one over the other. Not because one flower is better. You simply do not have enough water to go around.
I think the hardest part for me is not everyone will understand the need to make these choices. I look fine. I sound fine. But, I have been bailing out on plans quite a bit lately. I recently had an experience that forced me to re-calibrate my life for now.
The other week, I went to my brother’s 50th birthday party. My side of the family got together and it was a wonderful time. We laughed while my brother was opening his presents and took a picture of our mocked disgust while he read an inappropriate card. In the past, these celebratory times would rejuvenate me. Being with my family used to be a boost. This time was different.
We only went to their house for a long weekend – virtually it was an up and back trip. Yes, it was packed with activities, but nothing I couldn’t handle. Or, so I thought. I started feeling sick on the way home. Really sick. So tired I couldn’t focus. My body was exhausted and it felt like I was coming down with the flu. I rested for the entire afternoon when we got home, but nothing seemed to relieve the deep malaise.
The next two days were spent mostly in bed with an intermittent fever. I missed work. I felt really frustrated; as if my body was not letting me do things, like a simple road trip. Travel is very important to my husband and me. If I can’t do this minimal travel, how am I ever going to do our annual road trip this summer? We take a two-week road trip every summer and our kids count down the days until we can go. I started reflecting about how different I was last summer and I lamented about taking my body for granted when it worked “right”.
However, for my own peace of mind, I need to realize that RA is not a punishment. Find the light, Elizabeth. There has got to be a lesson in this condition. What is RA teaching me?
In making these difficult choices of where to go and what to do, I am learning to be mindful of my body and my constraints. These constraints are irritating, but I really feel that they are also forcing me to live in the moment. When I am able to spend time with family and friends, I am grateful for the time with them. I rarely waste my time anymore, as I am cognizant that I do not have unlimited energy.
I am also learning to mother myself. After my mom died, I felt like I had lost my tenacious champion. My mom was very protective and would go to great lengths to fight for her kids. I need to be that champion for myself now. Arguably, there are tough choices. I cannot attend all of the parties, vacations, events that I really want to go to these days. I disappoint my family and friends more regularly now.
But in the same vein of RA being an education, I am learning to advocate and stand up for myself. I am channeling my inner mother. I cannot worry about who I will annoy or hurt. I need to gauge how much hurt I am willing to incur if I do this thing or that thing, and what attending that event will cost my family if I am down for the count. These are not easy decisions.
So, is RA a present? Should we be celebrating this new gift? Well, I’m not going to go that far. However, RA is helping me to savor the moments. I am thinking about what (or who) is right in front of me, rather than what I am going to do in the next hour, day, week or year. I hope to become a better person, to myself and to others, as a result of this new normal.