in which I revisit humility, self- care and infusions

late afternoons in the studo

late afternoons in the studio, May 2013

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.

———————–

An update:

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?

  One thought on “in which I revisit humility, self- care and infusions

  1. Barbara Hoffman
    May 2, 2013 at 8:53 pm

    You are strong. Stay Strong.

    Barbara

  2. May 2, 2013 at 8:55 pm

    Ugh. And Hugs! I hope the treatment goes well, and the self care too.

    You know we’re all here, listening and ready to help however we can.

  3. May 2, 2013 at 8:58 pm

    Ugh. And hugs. I hope the treatments go well. That and the self-care.

    You know we’re all here listening, and ready to help however we can!

  4. loshakova
    May 2, 2013 at 8:59 pm

    Here are some of my favorite movies:

    with subtitles
    The Butterfly (dir. Philippe Muyl; French)
    The Gleaners and I (French)
    Departures* (Japanese)
    Hop (French)
    Queen to Play (French)
    Vitus (German)

    in English
    Stranger than Fiction
    The World’s Fastest Indian
    Get Low*
    The King’s Speech
    Lars and the Real Girl
    A Man Named Pearl
    Marwencol
    Nick Park claymation movies, esp. The Wrong Trousers and Creature Comforts

    *on the dark side — in case you don’t need anything else dark right now

    I hope the infusions help quickly.

  5. Dad
    May 2, 2013 at 9:43 pm

    Sarah, you really should try watching the Doc Martin series with Martin Clunes. It really got lily and I through some hard times. Love ya.

  6. May 2, 2013 at 10:24 pm

    Eureka! (No, no, no. Not “Eureka!” as in “oh look, everyone, I’ve discovered the answer to life, the universe and everything.”) But Eureka … as in awesomely entertaining streamable distraction. Just two words for you: Colin Ferguson’s eyes. (Oh, wait. Yeah, can’t count either.)

  7. May 2, 2013 at 10:29 pm

    Ugh, more life biting. Positive energy being sent your way. Get rest and take care.

    Hmmm, for the movies – all of the “Oceans” series – I just watched Oceans 13 the other night and it’s mindless, good fun, No Country for Old Men (brilliant); I, too recommend The King’s Speech, and for something that is *unrelenting* but ultimately hopeful (and a chunk of it with an Afghanistan backdrop), rent Flanders (it’s in French with subtitles).

  8. May 2, 2013 at 10:45 pm

    Love the reclining squid (Squidlympia) in the photo at top.
    Some recommendations for you one Dark, and one funny-dark-satire
    David Cronenberg’s “History of Violence” – one of the most perfect opening scenes I have ever seen, beautiful pacing, – the other “I Served the King of England”, Chezch with English Subtitles. Be better – sendinggood wishes. G

  9. Jeanne
    May 2, 2013 at 11:05 pm

    Dr. Who. Definitely Dr. Who. He has helped me forget the sometimes dreary reality of life many times. Be patient with yourself and breathe. I will send positive thoughts your way.

  10. May 2, 2013 at 11:12 pm

    Now is great time for Dream Bird! It is a lot of fun, easy, and oh so inspirational! Send warm thoughts and quick healing

  11. Deidra
    May 3, 2013 at 8:41 am

    You write so well. I’ve never quite been able to get across that feeling where my hand or knee or ankle won’t do what my brain is telling it to do to my doc/therapists so well. I have RA and sometimes, they just won’t move or I drop my glass in a restaurant or break the light bulbs in the store and it’s embarrassing. I know you don’t need me to tell you all your feelings with your chronic illness are completely normal because it isn’t an Olympics, it’s a life-long marathon. I was stuck with steroids and pain meds and bed-rest in January and I watched The Hobbit and The LOTR, matching my knitting and reading to it. Casablanca and Little Women are high on the list because you can always blame any tears on the stories/movies. SpongeBob gets some viewing because he’s silly and gets in messes but learns from them and besides, he’s a sponge that hangs out with sea creatures. 🙂 I hang onto my groups on Ravelry for dear life because they make me feel like I’m still connected to the Real World; your CY group, the VG group, and my Harry Potter Knit and Crochet House cup where my House and my nest (being a Slytherin, our sub-group is a nest), has been awesome with encouragement and silliness and friendship and kindness. They’ve given me recipes when more and more of my food groups have gotten cut out and connected me to research they’ve heard about and just been good friends. They even encouraged me to microwave dye because it takes less energy, you can mostly sit down, and it’s fast. I’ve followed web-cams in foreign places I’ll never get to visit they knew about and explored the galaxy on the NASA sites with them while we debated what life would look like in such places.
    So what I’m saying with all this long-winded self-centeredness is, don’t think you’ll disconnect from us or the world if you have to take a break. Be kind to yourself and realize there are so many ways to stay in touch and explore and share even if having to submit to the wheelchair is part of it. You aren’t a broken body with a chronic illness with physical limitations, you’re a creative spark wrapped in disobedient flesh and we see the blazing loveliness that is your spark shining through.
    I hear Once Upon A Time is a terrific TV show and I’m pretty thrilled with Grimm. I love the clothes on The Tudors but the history is really iffy. And honestly, when I’m really down, Alan Rickman in Galaxy Quest just puts the giggles back into life. So does Sean Connery in Indiana Jones and the Last Crusade. 🙂

  12. May 3, 2013 at 12:05 pm

    Good luck to you—I really hope things improve. You write really well and deserve this awesome FP! Congrats on that 🙂

  13. Donnell
    May 4, 2013 at 9:01 am

    Series:
    Farscape
    Numb3rs
    Supernatural
    Veronica Mars

    Movies:
    Ramen Girl
    Babe
    Stardust
    Hellboy
    The Station Agent
    The Visitor

    Take care.

  14. May 4, 2013 at 11:29 pm

    Oh, oh. ❤ There are no words I can offer since I hardly know you but through your writing I feel like you are one of the strongest, most well-adjusted people I know. I often find words on your blog that inspire me and stick with me and I hope you recover from this flare up soon.

    As for shows, I've been on a BBC kick and really enjoyed the UK version of Being Human, if you would at all enjoy a slightly campy vampite/warewolf/ghost living as roommates kinda thing.

    Finding Nerverland and The Fall are two of my favorite movies, highly recommended. Both happy with undercurrents of sadness, gorgeously filmed, fantastic actors.

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