I have been quiet for almost two weeks. I find that sometimes I get completely consumed with the daily living of Dysautonomia. We go from doctor to doctor, have one test after another, pick up our prescriptions, not to mention that the mere thought of doing housework, showering, or even eating a meal can be so exhausting to us mentally and physically. In order for me to cope, sometimes means that I have to take a step back, take a deep breath, pause and then release. This is my way of coping. There are times when I need more then a single day or week to regroup and go forward in my life. It is a choice that we make whether we like it or not. It is our way of survival. This is often very difficult to explain to our family and friends who do not have Dysautonomia. One would truly have to live with this disorder to fully understand what it is like for us to get through a single day. Our silence becomes an issue for others. We are not excluding them or avoiding them, we are merely trying to cope with what might be a difficult day, week or month. This is how we have learned to survive with Dysautonomia. It is frustrating when we are misunderstood. We've been down that road one to many times before with medical professionals. Deep inside we pine for our well self. We never stop grieving from the loss of good health. We find ways to cope, rediscover things about ourselves and reinvent how we live our lives, not because we want to....because we have to. Having this disorder was not a choice, however, we do sometimes need to make choices that others find difficult to understand. So, if being silent for a week or so is something that we need to do to get through a rough patch then so be it. Friends and family members...please don't take our silence as avoidance. We do love and appreciate you, we sometimes just have to do what is best for us at the moment.
Having a chronic illness is a 24/7 job. We can't take breaks when we want to, our bodies are constantly working overtime and we rarely get a vacation from this. Often times we don't have a co-worker (physician) who understands what it is like for us to perform the smallest task. We work very hard just to get through a single day. The bottom line...if we COULD, we WOULD.
Now, back to work!!!!!
Peace to all~