Wednesday, January 20, 2010

I want my naps back.

My co-commuters had an intervention, and I no longer share the driving. They say the spasticity is getting scary. I couldn't argue that.

Every day at about one pm I begin drifting off at work. In fact, nearly all my worst errors occur at that time. Funny: I used to be an excellent employee--a top performer and contributor.

I am desperately trying to keep up with family, friends and even fellow bloggers in Facebook. And it's not working.

The working and commuting are making it impossible to find time to go to the doctors, dentists, etc. I miss having my teeth cleaned and am unable to "visit" with the neuro for that "chat" he suggested over the phone a while back. "Unwell" now is part of my regular vocabulary, so please don't ask me how I am doing. I don't want to complain.

While we are still (mostly) paying our bills, my house is falling into disrepair and filth. I miss my blogs and my books; I miss writing. When I get home at night after eleven or more hours of commuting and working, I have no energy for anything except television. Yesterday, I cried over not being able to write.

People with relapsing-remissing Multiple Sclerosis should not be working and travelling long hours. If you are a doctor, and your patient says she or he needs to alleviate the work situation, please cooperate as much as possible.

New York is a horrible state in which to navigate the disability system. I understand that you don't want to get involved, and waste all the time and effort, but this Multiple Sclerosis patient seems to be slipping away, both physically and mentally, and she is trapped.

Little Pond