Wednesday, May 25, 2016

How do YOU celebrate World MS Day??

...apparently I do so by forgetting I had a workshop to present to my students. SRSLY. I think I looked like this when I realized:
Lionel Barrymore as insane Prof Leroy in The 13th Hour, 1927

I am really very good about reminders, calendar use, etc, but this just slipped away on some puckish malfunctioning synapse.  Well, that and I stayed up talking to my sister for six hours and went to bed at 4am.  The struggle is real.

I am sort of laughing it off, but since I also forgot to take my Tecfidera this morning, I realize I need to reassess my planning and coping skills and slow the hell down.  I think that's how I'll celebrate World MS Day--slow down.

My sister and I talked a great deal about how we both kind of bulldoze through whatever needs to be done. She was there with me when I got my MS Dx in 2009, and we both did our own coping thing--me saying "well, ok, what now?" and getting right into a clinical trial. I have no doubt that trial (for Ocrelizumab, soon to be approved) saved my much-overinflamed brain. And really, MS gave me no choice then, sooo..

But it did slow me down in some ways, and after my 2 month relapse which started March 5, I was reminded forcibly that yes, I'm sick, and yes, it's not going away, and yes, you will need to find time to rest and slow the hell down. I've been quite fortunate, but it feels like I probably did work myself to the point of needing to rest, perhaps ignoring enough to slip into a relapse--some of y'all know the feeling.

So this World MS Day, I'm grateful for my awesome job and awesomer boss, for a good enough brain so that enough synapses take up the slack for the burned out ones, and that I do have a sense of humor about it all. Now, what I need is a personal assistant to force me to sleep and/or rest. That would be the "most perfectest" Rx ever.

Enjoy the day, slay your demons, and smile as you plow through the obstacles. Then nap. Srsly.

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