Routine is not a matter of comfort for people with sarcoidosis. Routine is a matter of survival. Those of us with chronic disease depend on routine to manage everything from physical pain to body numbing fatigue to the constant emotional upheaval of our pain and fatigue. Routine allows us to maintain some sense of normalcy, some modicum of sanity.
It’s not always fun living a life of routine. It can be rote, repetitive and often mindless. Routines are mechanical things. They create structure and but they also lack spontaneity. Routines are both a friend and an enemy to those of us with sarcoidosis. They bring order to a world that is otherwise left chaotic in a body that won’t work properly. They also cage us in that world, forcing us to live within very limited parameters. Routines shrink our world to a manageable size but they also restrict us. They cut us off from so much else that goes on around us and sometimes they make us fearful of what lies outside of them.
When we step out of our routines the consequences can be unpredictable. Sometimes very little changes except perhaps a slight increase in fatigue. Fatigue is one thing we can always count on. No matter what we do, fatigue is always present. Other times stepping outside our routine can bring on something as severe as a flare in our disease symptoms, sometimes bad enough for hospitalization. The route our disease goes, when we change our schedule is anyone’s guess.
Having routine a for those of us with sarcoidosis, or any other chronic difficult health issue, is necessary. It is how we function at our best in most situations. Learning to create these boundaries is one of the first coping skills we learn once we are saddled with illness. Routines bring us a feeling of security, of control, when everything else feels like wildly unpredictable.
Sometimes for our own sanity, we have to try to reach beyond those boundaries though. Part of the balance of living with a disease like sarcoidosis, is learning when to push and when not to push. Finding this balance is a constant challenge but if we stay too stuck in routine, we can forget that there is a big beautiful world beyond the lines we have created for ourselves and sometimes making an effort to be part of that world is as important to our overall health as routines are. There’s always a price to be paid for stepping outside of routines but sometimes we have to weigh the cost against the benefit of taking a chance and sometimes the benefit outweighs the cost. Being stuck in routines is tedious and, while they are necessary for our physical health, they sometimes impede our mental health. Sometimes, despite the risk, it is just as important to overcome the fears we have of leaving our routine to remember that we are not defined by them or by our disease.