My left leg isn’t working properly.
It began yesterday. I got up from my desk and it felt as though my foot was asleep, only without the pins and needles. I just couldn’t get it to pick up properly; it wanted to drag along the ground with each step, a classic sign of dropfoot. Oh, you nasty piece of work, I thought, shifting my gait. My ankle felt unsteady under me, and the muscles of my knee felt uncertain, too, in this utterly strange way- almost as though they wouldn’t quite listen to me. I have such a hard time explaining this experience to people who’ve never experienced it.
It seemed better this morning but came back by the afternoon. I failed my bilateral neuro strength tests with Sam. We are such pros at this by now, running our checks on each other each time something crops up on each other. Push, pull, point, flex: arms up, take one finger and touch my finger and then your nose as quickly as you can, close your eyes, stand on one leg, now the other, good, good, good, wait. Wait. Again. Again.
This life, you guys. It is not what I expected.
This is not what I expected.
Life is so interesting. I need to focus on that today.
I am learning again, to be humble. To make the right choice. To come correct. I called my neurologist right away- no screwing around this time, thank you very much, I’ll pass Go and collect my $200, oh hell yes. I see the oh- so- dry (but utterly delightful) Dr. D tomorrow afternoon and who knows? Maybe this time I’ll walk out of his office with something that isn’t a Solumedrol infusion gift pack. Or maybe not, but at least this time I know what I’m in for.
Is it absolutely ironic that I was looking to up my mileage when this happened? Sure. Is is bleakly hilarious that I was considering getting back into boxing just as this hit me? Yup. Am I maybe- a- little- beyond- livid that this hit me when I really, really need some physicality to work out my feelings? WELL YES, YES I RATHER AM. How many push- ups can one girl do before she works out all her angst? I don’t know if my arms are up to the challenge of all my sturm und drang yet. Harrumph.
In the end: there is no negotiating my way out of this, no deal that can be struck. There is no avoiding it, either. There’s nothing for it but facing it, which is brutal: this is my inconvenient reality, and “inconvenient” is the nicest, most polite word I have today. I am hard at work on nice and polite today.
I don’t feel nice or polite today.
I feel like a box of nails and broken glass today.
I can’t be the only person in the world who feels like a box of nails and broken glass today, though, so I am aiming for nice and polite. Or more accurately: I am aiming for something better than nice and polite. I am aiming for kindness and compassion. I am trying to take how deeply furious I am with this ridiculous, stubborn leg and funnel that energy into work, to take how disappointed I am over another possible flare (WORK OR DON’T WORK, body, just pick one) and extend as much real kindness, connection and compassion as I can give to the people around me. It isn’t easy, but it’s impossible that I’m the only one who’s unhappy this week, and if I’m working through it, someone else is too.
That’s the real world: every time I meet another person, I never know what they’re carrying that day. I forget this some times. I forget this more often than I’d like, honestly, so I keep it written in places where I’ll see it and be reminded: the world is so much bigger than whatever I’m worrying about at any given moment.
I wrote the above two days ago. I saw Dr. D. today, and after the exam we’ve opted for Solumedrol infusions after all. He feels we’ve caught a flare early, and is pretty optimistic about my outcome after treatment, which is reassuring.
I’m feeling a little conflicted. I felt as though I’d won ten points in a Chronic Illness Olympics when we mutually agreed I’d been “much less of an idiot” this year in catching the relapse/ flare so early: self- care was pretty high on my list of priorities for 2013, so— WINNING? On the other hand, this is a confirmed flare/ relapse; why am I taking all these pills and a daily shot again, then? NOT WINNING. This takes me to a firm once- annual flare/ relapse rate. I don’t like those numbers, but I’m not sure I like the idea of making a switch in my disease- modifying medication at this moment in our lives, either. It’s a bit of a Catch- 22, and on the table for discussion in my follow- up appointment after the infusion therapy. On yet another hand (I now have three hands, hurrah!) there are pills as options for disease- modification, so, hey, I think we’re back to WINNING now, and that’s pretty awesome.
I’ll miss Maryland Sheep & Wool, which is a disappointment, but I will survive. With any luck I’ll be back on both feet and disconnected from my tubing in time for the trunk show in Westport. If not, well, I’ll still be there; I’ll just have an extra accessory, I suppose. Maybe two- it might wind up being my first public wheelchair appearance, which would be a very new thing, and would be very interesting to experience. It isn’t the end of world, certainly- I just don’t like that it’s happening, or that it has to happen right now. (I knew I should have practiced being in my wheelchair more.)
I’m trying to focus on being extra, super- careful with myself for the next few weeks— extra sleep, good nutrition, being kind, all those things. It’s probably not the worst thing in the world- although, to be honest, it gets more than a little dull, at times.
Which reminds me: who has awesome movie recommendations for a girl who will -and really, really should- spend about 5 days couch- bound? I’m not against marathoning really terrific television series, either; I have some serious knitting I’d like to accomplish. Enable me, please? I don’t do well when I’m bored; I tend to get myself into all sorts of trouble. Sam will come home, find banana bread in the oven, something simmering on the stove, and the sitting room tidily re- arranged and I’ll be scolded within an inch of my life. Help?