Even after all these years living with chronic sarcoidosis, a disease that completely changed my life, a disease that completely changed my body…I am still sometimes astounded at what a fragile creature I have become. I am taken aback by the need to keep my world small and controlled. I take for granted the value of my daily routine and only notice how dependent I am upon it when something forces me to change it. Recent life events, nothing I need bore you with the details about, have forced me to be more active in the “outside” world than I would normally be. These events have taken me out of my daily routine. They have been stressful events and I have had to push myself physically in ways that I usually don’t and now my body feels shattered.
I will figure out how to put the pieces back together. I always do. This isn’t the first, nor will it be last time, I will feel this way. Feeling overwhelmed by pain, fevers and fatigue is a constant struggle living with chronic sarcoidosis. Outside forces have a way of inflicting themselves on me from time to time and when they do, I often find that being taken out of my very carefully crafted routine, leaves me pained and drained in ways that feel like I have become a wrung out dish rag in need of a good washing.
In recent weeks, I am reminded of the necessity of my routine and that when that routine is broken, I suffer…physically and then emotionally. There is a snowball effect to what happens to me when I leave the delicate world I have created for myself. Sometimes I feel trapped by this world but when events such these occur, I am reminded of what a gift it is to live in a world of my own making, a world that protects me and keeps me healthier than I would otherwise be. It’s a small world but it’s a precious one and I should not take it for granted because it is the only world that gives me peace.
Being reminded of how fragile I am is always a kick in the gut and, maybe that’s because the small peaceful world I have created for myself, the one that keeps me as pain free as possible and helps me manage my fatigue in a way that allows me to feel somewhat human, is well…just that…small. I hate to think that I have to live a small life and being forced out of my routine reminds me of my limits. There is no doubt that living with a chronic disease like sarcoidosis, that can be set off so easily, shrinks a person’s world. And, even though I have a wonderful small world to live in, there is grief and there is loss in having to accept the boundaries placed upon me as a result of being sick.
While I am still sometimes surprised by the ways in which sarcoidosis has changed my world, my body and my life, the reality of my life remains the same. I am physically fragile. My routine is an anchor that keeps my world both small and manageable. I need it like I need the air that I breath and I need to keep the outside forces that haunt this world at bay as much as possible. I am humbled to live in this wee little place but I need not feel insignificant because of it. It’s not my fault I have to live this way. In fact, I need to protect my safe, small, precious, world as if my life depended on it…because it does!