Time has always been a difficult concept for me to experience in the same ways as others; perhaps because of the lack of a natural sleep wake cycle that would frame things into intrinsic patterns of days and weeks. It is often the case that once I sleep, be it a two hour nap or overnight, an event is transferred to the distant part of my memory so whether it happened that morning or when I was five I experience it pretty much the same way. I realize that I am odd and that this probably does not make sense even in writing, because I know from experience with others and studying in college that this is not the way the human brain is supposed to be wired to work. What can I say, I was never manufactured to factory specifications. ;) I must say there are advantages to my odd sense of time in that I am highly adaptable to most circumstances and can adjust to just about any living situation or routine change.
So with this odd and unique method of experiencing time, and the ongoing process of adapting to and accepting the long term implications and progression of this neurological disorder, my coping has been a bit different from the standard expectations. In many ways this has already felt like "normal" (i.e. what I remember and am used to) for a long time and memories of my other life before this feel as far away as memories of the bedtime stories I used to listen to as a little girl. Yet in other ways it is still raw because each morning there is that briefest of moments where I forget, where everything seems as it always was, and then that moment ends in a sudden realization of all that has happened. It is one of the sweetest moments followed by one of the most bitter. I still long to have the freedoms I used to have, the freedoms of not having to rely on others to access the world in so many ways, the freedoms of movement unhindered in my body. Yet these freedoms seem almost like a dream that I had, almost like a faded old photograph of something that was so long ago instead of less than 18 months.
Even my dreams at night are changing. In my dreams I can still walk, still run, still dance but now at some point in my dream I realize or "remember" that these are things that I can not do and am confused. I may walk in my dreams but I am somehow unable to do the one thing that is necessary to save someone I love. I am becoming restricted even in my dreams. Slowly it creeps in where it does not belong.
I am not dealing with as much anger over this happening as I am dealing with a longing to just finally have answers, to have a diagnosis, to have a name for it and perhaps ideas of how to treat it. I still sometimes have bad days when I mourn for what I lost, even though it may feel like a long time ago it cuts into my heart very deeply now, but I have many more days when I am alive in the moment and thankful for all that I have been given. It is a challenge when new symptoms, or progressions of symptoms of the related dysautonomia continue to pop up, but I have never backed down from a challenge before. I would just really like to know what I am up against, and how best to fight it now and through times to come. Because I have miles to go before I sleep. :)