When you're first diagnosed with an auto-immune neurological disorder, you look at life through rose colored glasses. These diseases might affect other people, but not you! You're better than everyone else and you are going to fight it. Others just don't try hard enough.
Very quickly, and very humbly, you realize other people aren't lazy. You realize they're pretty damn amazing. On a daily basis their nerves are going through a lot. Your nerves die, regenerate, and repeat every single day. I mean, not everyone can say that right?
The first year after diagnosis or hospitalization, depending on the illness, you still get praise from others and with pride you proclaim "I just started walking again 4 months ago!" They're super impressed with you. Wow, you inspiring human you! With their approval in mind, you give yourself some grace on your "bad" days.
Soon the praises become less and less frequent. Once that year hits, you're hard on yourself. Everyone says that year mark is a good indication for finishing recovery, or rather, "this is where you'll be the rest of your life."
That's a hard pill to swallow. I know when my one year Guillain Barre Syndrome anniversary hit, I cried nearly all day. I posted on Facebook all about my growth and even said "this one year rule isn't applying to me! No sir, I'm going to continue fighting even more," but deep down I didn't believe it. That happens a lot, you say something to others and to social media but I my head it was all "Nice to meet you, I'm Mrs. Negative Nelly."
However, I did slowly keep growing. I realized I was able to do more everyday, even at 13 months post diagnosis. Ha, take that naysayers! I'm still growing!
That growth enabled me to ask my Doctor what he thought about physical therapy, even this far out. He immediately recommended therapy 3 times a week. Some could see this as a step back. Sure, I did for a little while too. But then again, I started seeing growth at therapy. Fighting for yourself, asking for yourself, telling someone "I've got more left in me. Put me in coach!" made all the difference for me.
Your best is all that matters. Your best changes on a daily basis. Your best needs to always be what you need that day.
Your best is all that you need to concern yourself with.
Today, my best involved reading a book that I've wanted to devour lately. I've read 250 pages of Red, White, and Royal Blue. It's a totally addicting read, totally sexy, and totally wonderful. Yesterday my best involved me working for hours, getting 4 errands done, and getting a workout in. Yes, these are very different bests. But now I know the only way to look at life is saying "your best today, was awesome. Get back to reading..."
That's exactly what I'm going to do.