December 9, 2016 | Barbara Layt Vujaklija
Thanksgiving is over and Christmas is Coming as fast as eight flying reindeer, PANIC. The holidays can be stressful for anyone but for those of us with acute/chronic disorders like AE it can become a nightmare. The preparation even with help can be exciting and exhausting. The decisions can render some of us nearly unconscious. The shopping, wrapping, and decorating even with help from family, while fun can leave us totally wiped out both mentally and physically. Then there is the cooking for those of us who can cook and the loss of control for those who must hand the cooking over and simply watch. Don’t get me wrong I love Christmas and am fortunate enough to have in-laws who include us in their family celebrations. But then there is the crowd and the noise. After an embarrassingly short time I’m looking for a place to hide! Then there is the other side of Christmas.
For those of us with AE whose loved ones have been pushed away by the ignorance, the psychotic episodes, the chronic pain and disability, the disbelief and eventual breaks in communication Christmas must be a level of loneliness that most of us can only imagine. How is this time of year for the parents of AE kids? When asked to write a letter to Santa it’s full of wishes for the pain to stop or to be normal like their friends. How deeply does that cut? I hate to paint such a bleak picture but this blog is about the realities of our shared immune system and brain disorder. Not the fantasy world in the happy places of the patients, partners, children, parents, families and friends of the AE world. This blog is to support our family. To offer easy to understand knowledge and scientifically proven treatments.
The International Autoimmune Encephalitis Society is a non profit group dedicated to the support of patients and their families and the provision of reliable information. We are a family and as such must be able to support each other all the time but especially during times of high stress as we all know that is one of our worst enemies. To that end the Administrators are putting together a variety of ways to communicate with the group. This blog will attempt to address common questions in an easy to understand format. There is also a new forum page where you can start your own thread. And much more to come using the talents we have within the group. I am a retired RN with 11 years experience of AE, so I intend to translate, advocate and support. I also hope to make you smile now and then having found that laughter is indeed the best medicine. Best wishes for the best Christmas you can manage. Barbara Layt Vujaklija- International Autoimmune Encephalitis Society