“Venting About Migraine Disease”

Part One: The Journey

In keeping with my resolutions about Migraine Disease (capital M, capital D and that stands for Doctor) I have had to cross many venting outlets off my list. In so doing there are a few people that I care and love deeply that I have had to educate about the nature of the disease I have, and why I would not be talking about it much, if at all. OK, the “as much”, and the “at all” I’m working on. I am not a saint and I need outlets.

I have requested they not ask how I am feeling, if I was in pain, and to either, assume I was OK and choose not to talk about the “the pain”, unless I brought the up the subject. Most difficult of all, I asked them NOT to offer me treatment ideas, send me articles, tell me stories about their friends and their magic cures they were sure would work for me as well. Those close to me want to help. Some also hold deep misconceptions about the realities of living with migraine disease on a daily basis, and they are frustrated at their inability to either “take away the pain” or at least “lessen its severity”. Most are equally frustrated by their inability to help me – despite all those NY Times articles they have read. They hope that whatever information they have will be something I have not done, heard about, or come across in my 44 years of dealing with migraines. Some are sure I am confused or mistaken, and just have not heard about the “cure.” Here is the truth:  “there is no cure for migraine disease.” Like cancer, there may be one someday. For the present it does not exist. I am never sure whether they believe me when I say this. 

I vent to my medical docs when something is not working, or when I feel something needs changing, but that does not solve the emotional venting, or the physical venting that still comes up. It is the “why me?” aspect, the anger over it all, the fatigue, the isolation, the constant pain, and the inability to work, to contribute to the things I care about, except keep going and hope that tomorrow will be a better day. Some days it is, and some days it is not.

When I add it all up, it feels like what I imagine it is like to have died, with my spirit on earth, able to watch what is going on, but not participate fully. I am a ghost of my former self, living in the wings of a theatre somewhere, during a never-ending performance. The person I used to be is onstage leading the active, creative, and fulfilling life I want back. I am waiting for my cue to go back to that self, but it never comes. So I keep to my spirit self, waiting, and hoping for the words, “Enter, stage left.” 

This is the ultimate frustration. I am an artist/artisan and long for the concentration to create in all the mediums with which I have worked since I first built a tower of blocks when I was 2.5 years old. I was up at 6 am, standing on a stool, on a chair to get as high as possible before it all came tumbling down and my parents ran down the stairs to find me still on the stool with a guilty face. I had been strictly forbidden to do this by myself. They thought I would crack my head open. I was only annoyed that everything had fallen.

Now I do what I can in bits and pieces. Nothing seems to get finished. Sometimes it seems like nothing gets started either. Fatigue keeps me from accomplishing much besides the daily tasks necessary to keep going. I do bits and pieces of things I have started. And then I look and another week passes with my list of things I want to do left untouched.

When my mother died, I remember all the pamphlets Hospice gave me describing the Elizabeth Kübler-Ross Theory: 5 Stages of Grief. For those of you who are not familiar with Kübler-Ross’ work, they are Denial, Anger, Bargaining, Depression and finally, Acceptance. I have been thinking about them within the context of my own frustrations, need to vent about this awful, invisible disease, and other things I have just written. Many days I feel like it is really just my old self I am grieving. I am trying to see if and how these ideas fit, where they fit, (if they fit at all) and how this may help relieve my continuing frustration with my self & my migraine disease.

To be Continued.