How NMO Has Changed Me
Last updated: June 2022
I have always been a mover. Sitting still for too long makes me antsy. Even before I was diagnosed with NMO, I had other illnesses that caused disability, but I was still on the move. I volunteered, found part-time work, and even did daycare just to feel like I was a part of something. Now, NMO has stolen a little piece of me.
I've always been a mover, shaker, and a worker
I remember 50–60 hour work weeks or working multiple jobs at a time because one thing about Mo was that she was a go-getter, and she was going to work and work hard. I can probably say that my ambitions may have added to my health issues with all the high anxiety and stress, but I digress. I was the person that my job could count on to do overtime if it was available, especially if there was a special occasion coming up.
"These times they are a-changin'"
The sicker I got, the more I changed. I didn’t realize for a while that some of the symptoms I was experiencing were related to NMO because I didn’t even know that I was living with NMO until I was diagnosed in 2020. I started to become a bit of a recluse and my social anxiety got worse. I would find reasons to not go out, or the pain would be so bad that I didn’t want to. A lot of the time, just anticipating the pain coming kept me prisoner, and to be honest, it still does a little until this day.
How NMO vision loss changed me
When I lost my vision in one eye, everything truly changed for me. Now, if given a choice, 9 times out of 10 I will make the choice not to drive, but at least I had the option to choose. When I lost my vision in one eye, I didn’t drive at all for 6 months. The sun hurt my eyes or would cause a migraine so bad I couldn’t focus. I was afraid to drive if my children were in the car because I didn’t want to risk hurting them. The biggest difference was that I stopped driving at night. How am I supposed to drive at night when I can barely see in the day? Not driving at night has really killed any social life that I still have because unless someone comes to pick me up, or my husband drops me, off I won’t go. I don’t even like to ask because I feel like a burden.
"Don't it always seem to go..."
There's that saying: “you don’t know what you’ve got til it’s gone," and it has never been a truer statement than it is for me now. Before my life with NMO, I didn’t really care about not driving because I still had the option to do it, but sometimes chose not to. I haven’t had any doctors tell me that I can’t drive now, but I have tried, and for my safety, and the safety of others, I just feel like it's not a good idea. What NMO stole, my vision is irreplaceable, and I feel a little less of a person because of it.
What is the most significant way in which NMO has changed your life?
Typically, how much time passes between attacks for you?