I finally got in to see my neurologist today and it didn’t give me the answers I hoped for but I suspected were true anyway. And they are.
Yes, my disability is getting worse, just as I feared it was. It’s kinda funny because I live in such extreme denial about my health. Really, about almost everything, but especially my health.
I’ve told myself since I first got disability that I fully believed that I would be able to get off of it someday, despite the fact that I didn’t have any reason to believe that. It turns out that I was actually very wrong.
Yes, my disability is getting worse, not better. I thought it was somehow within my control but it’s obviously not. My legs hurt pretty much all the time and honestly have since I had that mishap (whatever it was?) with my car being unsafe to drive. I’ve never really recovered from that, which sounds so incredibly stupid to say.
My sleep schedule is also really fucked and isn’t getting better either. I have another appointment with the sleep specialist at UTSW. I also have an appointment for an MRI of my brain, my first one in 4 years.
I thought I was fine, mainly in a holding pattern. But it turns out that I’m actually not okay and my disease has been progressing all this time. But there’s not anything they can do to stop it, either, so it’s not like more regular checkups could have prevented anything. I just have to live with the fact that I’m getting worse and try to make the best of it somehow.
Mostly, it just really makes me miss J all the more. He always had my back, even when we didn’t have enough money to do anything that made a difference.
Now I have to hope that someday I will find someone else who loves me like he did but I’m not exactly seeing people lining up.