I got the MRI/MRV results last night.
I didn’t tell anyone except my husband and a friend. Not because it wasn’t good news, but because it was. They were clean. Nothing showed up.
Nothing showed up.
Please don’t misunderstand me, I wasn’t hoping for a blood clot, I wasn’t hoping for a tumor or something requiring urgent brain surgery. But I was hoping for something. Hoping for anything. Because the thing about a clean MRI is that it’s not always a good thing. A clean MRI does nothing for me. It doesn’t mean that I don’t have unrelenting headaches. It doesn’t mean that I’m suddenly sleeping more than 3 hours at a time. It doesn’t change anything. If anything, it is the opposite of change.
A clean MRI means that we have no plan. It means that we are absolutely no closer to finding a way to slow down these headaches. It means that we are back at square one.
For the record, I hate square one and the fucking horse she keeps riding into my life on.
I didn’t sleep much last night because I kept having dreams about my headaches. Over and over I’d dream about sitting in doctor’s offices and being told that there was nothing to be done. I woke up short of breath, in a cold panic. I realize that this dream may not sound like much of a nightmare, but it is for me. It’s my nightmare, my future.
All day I’ve wandered around in a fog. My doctor told me to call and schedule a follow up appointment, and I put in the call, but have no expectation of being called back anytime soon. (The only way I got the results was to email my doctor and she said that she hadn’t gotten any messages. Yes, that does make me want to scream.) But I also just keep thinking, why even bother?
We know that there aren’t any medication classes that we haven’t tried. We know that we’ve done all the tests. There isn’t really anything left to do. These headaches aren’t going to kill me. They don’t seem to be doing any real damage to my brain (if you let go of that whole brainstem slumping business). There’s just really nothing to be done.
For the last two years I’ve had a headache for every moment of every day. I haven’t had a day off, I haven’t had a night off. There is literally not a moment where there isn’t pain. I know that some of the people in my life think I’m exaggerating. They think that the pain cannot be that bad because I still go to school, because I bake, because I go on vacations. Because I refuse to give up on the life I chose.
I have learned to live with pain. It was not something I ever wanted or hoped to do. It was a necessity. It was the only way I didn’t have to give up on everything I’ve worked for. The pain is very real and if anything, it’s generally a whole lot worse than I make it out to be.
I don’t know what the next step is. I don’t know that there even is one. Right now things feel tired and hopeless. And in a way, I think that’s easier. This cycle of hoping and hurting sometimes feels more exhausting than the pain. Two years of disappointment only intensifies the ugliness of the two years of pain.
I just keep thinking that maybe it’s time we stop trying altogether. Maybe it’s time to stop thinking that this is just a phase. Maybe it’s time to realize that it isn’t something that’s going to suddenly stop.
That this is just my life.