Sometimes I don't heed the warnings, and demand that my body "be normal" and get myself into real trouble. It can be most frightening. My primary care doctor relocated some time ago now and having seen her just before she left, I have procrastinated finding another primary provider in the immediate area. It will be a hard and potentially expensive search to replace her. "Lyme-literate" physicians are rare, especially in Vermont where it seems that they have made an example of one of the best Lyme doctors this country has to offer. All of us who knew him well, know that it is not by his own choice that he isn't with us still, though he never speaks of the details of having to close his practice to those with Lyme Disease to his other patients. His Lyme patients miss him terribly. It can be most frightening to have symptoms of early infection, knowing that I don't tolerate antibiotics, and have no local "Lyme-literate" doctor available to help me wade through my options to get to feeling better. I am so glad that I am, by profession a graduate nurse and apply what I know to caring for myself!
Any of us living with chronic illness knows that we live moment to moment and know our limits, though we, more than infrequently, don't honor them. When we are "going good", we overdo it, knowing that the next day will likely be one that we have to put our feet up.
Pinterest becomes my serious occupation when I am down. I take dreaming seriously and spend my horizontal times doing just that. I plan and scheme and re-order my do-lists to make the most of when I am ready to challenge my body. I don't mean to complain. I indeed relish in what I can do versus what I can't, and am so blessed with a supportive family! Living with a person afflicted with a chronic disease is more than enough to try even the most loyal!
Denial is also part of my routine. I am determined to not let Lyme keep me down. I am still on the Marshall Protocol after almost six years. My friends ask when it will be over, (treatment, not life,I hope?) and I avoid the question. I wonder too, if treating this disease will ever be over. Where is the cure? And if not this treatment, what will be next? All who suffer with Lyme ask that question and simply carry on and live as fully as they can in the "between" times!
So for those who wish that they had the time for such frivolity as to live from pincushion to pincushion and project to project, I reply, "Be careful what you wish for". I miss working out in the world, though I am working on the goal of "being out in the world more". I treasure my Little House and bringing you, my readers, the details of running it and making pretty things for those of you whose lives are too stretched. I remind myself and my readers as well, that it is in incremental steps that most of us achieve our dreams!
