One Month Later

I am exactly one month into a three month "temporary break" from work (SSI). One month ago I had my last day in my beautiful office. One month later this "break" does NOT feel temporary.

I'm slowly coming to terms that my condition (currently just called "Myopathy") is progressive and degenerative. New symptoms still crop up from time to time and none of them leave once they arrive. They may get stronger or weaker, but once here they don't just set up camp, they build a condo and invite friends.

Not very long ago I could push myself to walk around our block with my dog. If I were to do that today not only would it take every spoon I have, but I think I'd fall over. The dizziness is a bit better, but I'm still very foggy headed, especially once I get tired. And that happens all the time. 

In short, I'm unable to work.

All the moods of me.

This Sunday I have another brain MRI. And on the 22nd I have a follow up with my primary care doctor who I trust completely. At that appointment I'm going to talk with him about extending my disability leave. There's no way I can go back to work as I am.

My hope for something or someone to "fix me" is waning and I feel a pull to just do what I can every day. What I have is obviously still a mystery to all medical professionals, though they've been able to rule out quite a bit. To me it just feels like everything my body went through during the TB and brain tumor left me with something "turned on" that never should have been. Or not. Who knows? All I know is I can do less this week than I could the week before and so on and so on.

I also think I need to make some small modifications to my house while I'm still able to be so mobile. Planning ahead is never a bad thing.