When I wake up in the morning, the first thing I do is assess the state of my head. I have actually been doing this for some time, not because I want to, but because it is necessary in deciding what I do next to get myself moving.
Can I just say that some days are better than others?
What I wish I didn't have to say is that I never, ever wake up with a ZERO.
I hope for a 2, or a 3, or even a 4.
After that, it gets touchy.
Some friends have asked why I don't stay in bed on those 8-9 days.
And the straight answer is that it will stay that way if I don't get up. If I do get up, get in the shower, get moving, have some tea, take some Motrin, put some heat on my neck, there is the hope that I can get it down to something more manageable.
That's the reality.
I love that you appreciate my positive attitude, and my stubborn resistance to this saga that has become my life. Your encouragement always means so much.
But I have to keep it real. I couldn't lie to you. You've all become like old friends, moved away maybe, but friends still.
The truth is, some mornings, I sit and drink my tea, and I cry. Like now.
Not out loud, just lots of tears.
It's the only time that I could write about it, in the middle of it.
The pain wears me down after a while, and all the things I love about my life seem not so important.
All the things I want to do in my life seem expendable.
For just a while, the pain wins, and nothing else matters.
I give up to it. I surrender. I'm done like toast.
The advice I get is call the doctor. And yes, I will call him. And he will say ONE of TWO things.
(I was a nurse for too long)
ONE: it is too soon, you are still healing. (Translation: this is the reality of a Chiari patient, the headaches and all of it, forever, as it is well documented that decompression only stops the progression of the problem, it does not make it 100% better)
TWO: let's do an MRI (Translation: we'll find that it is really not fixed after all, and we'll schedule surgery #2)
You see my dilemma, right?
I don't want to hear either of those things, though I am sure at some point I will. Just not today.
I can get through today.
And call it genetics, call it chance, but somehow or other, I am possessed with this determination, this hard headed, pig headed, I can do it attitude. And every day, I call upon it to pick me up, and move me forward, to make me believe that I will be OK, to make me believe that indeed I CAN do it.