During my latest visit to the Neuro-opthalmologist, I finally asked him if there was any “better”, or if this was as good as I’m going to get. I don’t really know what the end goal is that I’m supposed to be working toward.
He told me that some patients go into remission, while others have some level of constant dizziness for the rest of their lives.
Neither of these options are particularly reassuring. When I hear “remission”, I think of living every day with the fear of not knowing when something is going to come back and ruin you. Meanwhile, the other answer needs no explanation as to why it sucks.
I’ve been having a hard time figuring out if what happens to me falls under the category of a chronic illness. I can relate to a lot of the articles I read that are written by people with chronic illnesses, but then I feel guilty for relating to them because no one has explicitly told me whether what I have is a chronic illness or not. But when you start hearing words like “remission” and “for the rest of their lives”….it starts to sound chronic. And it certainly sounds like a illness. I mean, on some level I know it’s an illness, but I suppose the issue is that it just didn’t fit into my idea of what illness means…I really can’t explain it.
So now that I finally asked him (because before, I hadn’t wanted to hear the answer), I am feeling a mix of emotions and it feels a lot like grief.
I am very afraid I’ll never be able to be on stage again.
I get no warning before I end up on the floor, dizzy, rolling around, screaming for help. Any migraine pain usually comes after that. Sometimes it happens without migraine pain. When you get down to it, I’m mostly…just not receiving any input from one side of my vestibular system. And so each day is unknowable. Will I be able to walk a straight line? Go up and down stairs? Balance in the shower or on the toilet? And even smaller things become almost impossible.
My mental health has been better this year, then my body decided to crap out on me all of a sudden, and horrifically. As you can imagine, it’s not doing wonders for my mental health right now. So now it’s a double whammy.