Still Finding Balance

I’ve received a few questions this week about how things are going with managing the Rheumatoid Arthritis.

I appreciate the questions as sometimes I get wrapped up in the task list of managing and do not remember to communicate.

Physically speaking, it’s a balancing act - not referring to my foot but to keeping from illness - and I haven’t quite gotten the hang of it. When I started taking the pharmaceutical in July, I knew that I was making a trade: long term mobility for more frequent illnesses. An immunosuppressive drug to keep my immune system from attacking my joints also suppresses the ability of my immune system to ward off illness.

Therefore, as discussed previously, I am learning to be more active about managing my lymphatic system. I haven’t mastered it. There are a couple of smaller tasks that I need to work on adding to my daily routine that will help.

My doctor said that part of managing the lymphatic system is exercise. If there is a circumstance that impacts my ability to get to a class, I need to find other ways to exercise. I’m still figuring out whether there is a threshold at which lack of exercise leads to more illness. Figuring that out will allow me to be more proactive about managing around unexpected circumstances and changes in routine.

Emotionally speaking, managing has been more stressful because other people don’t listen and respond well. 

When immunity is low, I have less energy and may need to limit how I interact with other people. I am aware of my limitations and am very up front about communicating them. Having limitations doesn’t mean that I do not want to or should not participate in an activity; it just means that my participation is modified. I will communicate my limitations and modifications. 

This is not so that other people will feel sad or find the need to cut short their own participation. In fact, that response is actually more draining and can physically reduce my ability to participate.

Pity is the worst part for me. When someone expresses pity because I have limitations, it is an emotional invitation to have a victim mentality. A victim mentality does not help anyone achieve victory in any scenario. Instead, it invites one to view him or her self as one who doesn’t have a chance. DO NOT DO THAT. I am working very hard to not be beaten by this disease. 

Treating me as a victim communicates that I should not spend time with you because you are not listening. I’m a little like Horton the elephant - I say what I mean and I mean what I say. If I say, “I want to go with you. Please be aware that I have to wear a mask this time”, I mean that I want to spend the time with you and participate in that activity but I don’t want you to be surprised when I put on a mask to help protect myself from the masses. In this case, I know that my immune system is struggling. Likewise, “I need to sit in the car while you go in but please take all the time you want” means that my energy is low and the time I can spend sitting alone will help me recoup some energy (which allows me to spend more time with you). Rushing back may actually cut short what I can recoup so actually take the time you need.

If I agreed to a modified participation in an activity, it is because I wanted to spend time with that person or group. The alternative is that I stay home and do not participate at all. I’d rather have some fun with my friends than none.

Additionally, my Hope is not in my physical ability to function. My Hope is in the God who knew in advance that all of this medical stuff would happen. Inviting a victim mentality distracts from focus on the God who can handle it and puts my focus on my ability (ahem, lack of) to solve the problem(s). That's not good for mental health or forward progress.

For the question, “How is your health today?” It is getting better. The last few days have been a struggle. I had more people interaction than usual in the last 2 weeks. It’s cold and flu season and I missed some of the tasks that help me stay healthy. This morning is significantly better than the previous 2 days and, based on past history, I will probably be fine by tomorrow if I continue to rest and incorporate all the little things that have been missed recently.

Thank you for asking.