There's an elephant on my face: Out of control

Generally, we all like to have some control over our lives. One thing that TN doesn't allow me to have, just like any other illness, is to have control over how I feel physically. It doesn't allow me to have control over how severe an attack is, though I can try to avoid triggers, I still can't decide when I'll have an attack and when not.

I do not have control over how I will feel in the morning, even if I did go to sleep with low pain levels. I do not have control over how much pain I will have by the time I get to work, even if I was able to wash, brush my teeth and get dressed without attacks.

I think you get my drift.

Having a diagnosis of a progressive condition, one without a curative treatment, means that I have had to learn that there is a lot that I can no longer control. I have no control over how much it has progressed in the last 5 months.
It has been, and continues to be, a very difficult thing to deal with. As a result, I have found that I try to hold onto as much control as possible in areas of my life where I still have it. Certain aspects of work, being able to choose not to take medication that isn't working, selecting a procedure after I have researched it and discussed it at length with the specialists.... these are all things that I have control over.

In a way, this is why it is so irritating and at times, infuriating, for someone to say something like, "but you were fine yesterday/earlier." It is extremely frustrating to have simple things that I should and can still do, being taken away from me because others feel that they are either more capable or are fed up with waiting for me to deliver on a promise where in the past I would have done it much quicker. I am not saying that I still expect to, or want to do everything I could before. I am however, finding that I am asking those in my life more and more to at least talk to me about their ideas of issues that affect me. To take away my decision making ability when I still have it, is by far, the most hurtful thing that has happened since my diagnosis and the progression of this disease.

So, for those, who like me, are struggling to hold on to the seemingly simple matters in life.....carry on. Keep that control, even if your body has decided to take so much away from you. For those who have to live with, and interact with us, remember, this physical condition, though it has its' psychological effects, does not take away my ability to think and reason as I did before. I can still have a reasonable, logical conversation with you (assuming I am able to talk on that day) or email discussion. My disease might reside in my head, physically, but it has not taken full control of it and/or its' contents.