“Keep it together, for God’s sake! You can handle this!” Yup, this was my self message for many years. After all, I was young, relatively in shape, as I was working and pretty much your average small town mom. & wife, & RN. In fact, even now, these are still the messages my mind pushes through: my “push notifications ” if you will. So here I sit, 27 years down this road , and only now really getting the part about letting things go while still doing the best you can. “Settling” comes to mind; you have to settle for less and come to terms with this new reality, otherwise you are going to be fighting against yourself way too much and just causing yourself and your family /friends a fair amount of PIAness (pain in the assness).
I have mentioned before how my training as a RN has not necessarily served me well, as knowing how the healthcare system works and how the HCPs think & work puts me at odds with my own care. I have wondered about this from time to time. I know that as someone that has lived with CKD for 27 years now, I have certainly learned about my body, the many treatments and how I respond or don’t. Part of the barrier in receiving the kind of health care that we patients would like is that it doesn’t really jive with our present system of health: Please see the TED talk below which I discovered not too long ago, thought it had many good points.
All the while we struggle with our disease(s), our personal tragedies , our losses/grief and their resultant human reactions (think depression, loneliness, & anxiety, loss of self-esteem, and sense of self), many of us will try as hell to be the person we have always been while others are just too overwhelmed by the disease and how to manage it to engage too much beyond that. We hate pity, we want to be part of life, as we are not dead yet. On the other side, we are aware of our lifespan being risky serving as another “motivator” to maintain the best care we can possibly manage.