“How do you build and maintain hope when your life is dominated by migraine disease or another headache disorder?”
I just missed the deadline on this one, but I’ll write about it anyway because it is a good one. That elusive HOPE. How do we build or maintain hope? No, seriously, how do we?
Because I have no clue at all. I struggle to find hope and hold onto it for just as long as I can. I hoped I would be able to find effective treatment… not awesome treatment, but maybe 50% reduction of migraines, which would leave me with about 10 to 15 a month. That is all I hoped for. Then my neuro tells me flat out that he has run out of ideas. He has no clue what else to try. There goes my hope. I’m stuck like this for good. He will send me to another clinic and maybe, he says, they might try something else. There is a long waiting list so… it’ll be a year or two. So now I hope I survive till then.
I hope to hold onto my job and that depended on getting medication that would help me get through it. Without that… it is going to be hell. My neuo told me I can’t go on long-term leave because insurance companies will fight you all the way for migraine conditions. And again my hope dies because I know I cannot continue at this job going like I am and survive. So now I hope I can find some other way to survive and screw them all.
I mean these guys tell us we are screwed for treatment, screwed for assistance from insurance but expect us to be able to function somehow on our own. Without killing ourselves… been there, done that and honestly when you look at the situation they put you in, when hope dies, that is the option that jumps out at you. These people crush hope and offer nothing in its place.
My migraines control my existence. When I can move, when I can think, when I can function. I have no life. No social life. No existence outside of work. Work is not going well at all. No hope in my neuro. No hope in insurance companies or relief in long-term disability. Equals no hope in survival. Literally going on as I am trying to live like I am not disabled when I am, will kill me.
The only hope I have to survive is to acknowledge migraines do dominate my reality. They do dictate my choices. No one will help me (employers will not help me, insurance companies are designed to screw people over not help them, there are no services to help those with invisible disabilities). It is up to me to make choices that are hard, compromises that are hard, that will make things better on my health. Like when I chose not to go for my Ph.D…. very hard choice, but it needed to be made. And now, I need to find a job that fits the criteria that is migraine friendly and when I find that job I need to take it even though it won’t be as fun a job and won’t make as much money… but because it will be less stress, it will be fewer hours or telecommute or both, and it will be far better on my health. And I HOPE I have the courage to make that choice if or when it comes along because I know I will fear the change, fear the loss of another career.