Tuesday, November 29, 2011

Patience, and some history

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.
-From The Spoon Theory by Christine Miserandino

Do you run through each day on the fly,
when you ask "How are you?", do you hear the reply?

When the day is done, do you lie in your bed,
with the next hundred chores running through your head?

You better slow down, don't dance so fast,
time is short, the music won't last.

-From Slow Dance by David L Weatherford (Warning: music and obnoxious formatting at the link)

I used to live a high-speed life, and in some ways still do. In high school, I took the most challenging courses offered each year, plus concert/marching band. Marching band by itself is a huge time commitment, involving band camp, after-school practices, in-school practices, home game performances, competitions, and annual ceremonies such as Veterans Day and Memorial Day. For two years in high school, I was involved in committees at the UU church I attended (my senior year, this was the Executive Committee). I was in chorus for one year in high school, and in the UU society choir for two. I participated in some GSA events. I went to poetry club meetings. I worked on the literary magazine. I volunteered. I somehow juggled all of these, if not effortlessly, at least well.

[A lot more after the break.]

Flash forward to college. My freshman year, I started experiencing odd aches and pains in my arms and other places often enough that my mother started joking that I was breaking down. By the second semester, I had figured out that something was seriously wrong when I starting having trouble doing a lot of different types of schoolwork, such as writing, typing, and keyboarding (the musical instrument). I went to the health center, and they gave me Naproxen to deal with the inflammation. They told me to stop doing so much with my hands, until I went back to normal.

I assumed the problem was a repetitive stress injury. I had, after all, experienced these types of problems before, most notably the NaNoWriMo of my senior year. A day before it started, I had helped put up flyers for a church rummage sale all around the city, and hurt myself by overusing the staple gun. I then started handwriting for NaNoWriMo in school. Then I did my homework even though it hurt. By the second day of November, I was in agony and attempting to take notes with my left hand. But this problem, at least, went away with some careful planning and nursing of my wrist.

Not so the problems freshman year. They didn't go away. Or, they got better with medicine and frequent breaks during work, and accommodations to take longer on papers and tests, but it never stopped completely. Over spring break, I saw a rheumatologist, and she gave me a preliminary diagnosis of Sjogren's Syndrome. My pediatrician prescribed piroxicam/feldene when I told her that Naproxen wasn't working and I wanted a medicine that was once a day, since I kept forgetting multiple doses. Later, I came to be grateful that the director for the university orchestra had declined my audition that semester because he didn't need flutes for Mozart's Requiem. It meant I wasn't trying to play through the pain. But it also meant that for the second semester in a row, I wasn't performing anything. This was a strange feeling, after 8 years in band and even longer in music classes in general.

Sophomore year. I took up dance, initially planning to take Intro to Dance, but then taking Modern I when the Intro professor told me that I had too much experience moving from my mish-mash of elementary school gymnastics, high school marching band, and informal belly-dancing. My professor for Modern was an odd fellow, but he started us out with meditation in the class, and I quickly came to think of dance as a twice-weekly stress-relief session. It helped keep me flexible and did wonders for my pain levels. I think this was the first semester in which I took five classes instead of four. I spent most of fall sick with one thing or another, but I passed the semester okay, and I even had a few more extra-curricular activities, like Kult (a horror RPG game). Second semester, I spent most of it sick again, but this time it was with rounds of a stomach bug every few weeks. I learned to loathe the dullness of the BRATTY [Bananas Rice Apple sauce Toast Tea Yogurt] diet, which mostly featured rice and bananas and Ramen noodles.

That semester, which will only be "last semester" for a few more weeks, I took two classes that were part performance, and also was musical director for Into the Woods, even though I had no prior experience in such a role. The semester was so. much. fun. One of my classes was an improv dance class with the same professor with whom I had taken Modern I. Another was Yiddish Cultural Expressions; our final was a theater performance of a play written by the professor. I was in the orchestra. It felt so good to be a "real" musician again--because I was playing my flute, something I had been afraid to commit to ever since I started having wrist problems. Since flute is my primary instrument, playing it again released something in me and told me that I could still do it--if I wanted to. (And more discussion of that will have to wait for another day.)Into the Woods was amazing and taught me so much, not least that I should have been assistant musical director, if anyone with experience had been available.

Also last semester, I started developing in a major way pain in my hips and knees and ankles. Dance helped some, in that it proved to me I could still get a full range of motion without hurting myself, and also relaxed me. But I also took a midterm and a final in a separate room where I could stand up and walk around (these tests were within a couple of weeks of each other, for math). The pain continued into the summer, although it was a little better when I wasn't spending so much time walking. On the other hand, the first few weeks of summer had me bored AND stir-crazy because not only did I not have classes stuffing me full of information, I also just suddenly stopped walking several miles a day, as I do to get to classes, and also stopped having 80-minute dance classes twice a week. But I did heal some, and the hot days helped, too.

And then…this semester. This semester I spent a couple of weeks in moderate-to-severe pain almost constantly, before finally going to the health center and getting the prescription for amitriptylene. I've learned that I can't or shouldn't take long drives if I can help it, that I can walk to all of my classes if nothing unusual has happened to cause a flare-up, that it's okay to take the medical van a lot, that standing up for 45 minutes takes a lot of effort and I usually can't walk too well afterwards, and that even if I can walk, I often have to slow down instead of walking at top speed.

And, as in the passage I quoted at the beginning of this entry, that's the hardest thing. Learning to slow down. It takes a patience with myself that I didn't know I had. Sometimes I don't have the patience, and get frustrated, but I'm getting to the point where even if I have a long list of things to do, I celebrate getting just a few of those items crossed off. I'm starting to plan ahead on major assignments, to adjust for the possibility of flare-ups, although as ever I have a hard time not procrastinating. I leave early for class when I can, so that I can take my time walking and not worry about being late. Sometimes this takes a conscious effort, because my habit is a fast walking pace due to the distance from my house to just about everywhere else on campus. It often happens that I slow down and thirty seconds later have to slow down again as I notice twinges in my hip or knee. When my mind sets my body on autopilot, it's a mixed blessing. On the one hand, if I'm in a lot of pain and don't want to wait for a ride, it helps me forget the distance I still have to go and just sort of zone out so that I'm not consciously noticing problems. On the other hand, it takes significant effort to walk slowly, particularly if I'm heading to class or it's cold out, because I have to fight to stay consciously aware of my body and speed for a period of time.

It's not just the walking. I also have to make an effort to balance activities each semester and break them down into manageable amounts. This includes mixing classes that have papers with classes that don't, taking vocal performance classes (even if it happens to be voice lessons) instead of instrumental ones, and not taking on too many extra-curricular activities. And then I have to plan out how I'm going to tackle my homework, job, and other tasks each day based on priority and what I can physically manage in one day. If I have laundry, baking, reading, and a written assignment that all need to be done over the weekend (for example; I often have more, but say those are the top four), I'll probably need to do the baking on one day and the laundry on another, and would probably mix reading and baking and laundry and writing together. Baking generally requires that I be on my feet, and laundry requires other physical effort. I'm likely to be a bit achey after writing a paper, and hot laundry feels good on the aches, which is the reasoning for that particular division.

I'm learning how to prioritize based primarily on how I'm feeling on a given day, and only secondarily based on what needs to be done most urgently. I think this may be resulting in some non-urgent tasks getting done sooner than they would otherwise be done, but I would have to start keeping track of what I do each day to really determine that. Certainly, some things happen after they were due, but that can't always be helped.

All in all, the way I approach things is slowly changing to adjust for my new reality. It helps that I have a great support system that includes awesome friends and professors and people at the health center and deans' offices. Even so, a lot of the adjustments are on me, and I'm starting to come to terms with some of the changes. I even enjoy a slower pace, sometimes.


  1. I'm leaving multiple comments tonight, but I'm sure you don't mind. ;) (And I realize I need to double space between paragraphs, sorry about that in my last comment.)

    This post really resonated with me as well! It sounds like you have done a good job adapting your tasks to your body, and I think I should consider how I can do this more. I am in the bad habit of doing a whole bunch of tasks at once, feeling bad for a few days, then doing everything that was stacking up, rinse and repeat.

    I took swimming classes during two years in college and that was a lot of fun for me. I told the teacher/coach that I might have to take it easy because of my hips and shoulders, which he totally respected (he was so awesome). I ended up doing fine and he'd laugh, saying that I was like a fish. I love swimming. That's one thing I really need to get in the habit of doing again. Baby steps!

    Good luck with the rest of your semester. :)

  2. About double-spacing--no worries. It didn't present any difficulties at that length.

    I read both of your comments before commenting here, so I think I may have addressed some of the points you brought up in the other post.

    The thing about adapting tasks, is that some of it takes brainstorming initially, sometimes a lot of it, and fairly often someone else (my doctor, or a Dean, for example) gives me ideas for how to cope that would never occur to me.

    For example--my Hebrew book is extremely heavy. I figured out after a few weeks that carrying it was setting off problems, but wasn't sure how to address it. Two other people (including the prof, who said she used to have back problems with these kinds of things) suggested breaking the binding and splitting it up into chunks, which has worked well, although I use alligator clips instead of a binder to keep them in order. However, I'm a bibliophile. I would never have thought to destroy a book to make it easier to use. (Still won't, unless there's no better choice, as in this case.)

    If you want to try adapting tasks to suite your body, you may want to try bouncing ideas off of someone else who knows some of your limitations. It doesn't have to be someone who's used to finding accommodations for these types of things, although that has certainly helped me some. Inspiration can come from odd places. You're welcome to send me an email at rosemaryxrue at the google related one, if you want more specific feedback from me.


    I have a friend who swims regularly. I've never been in the pool here, mostly because of how far the athletic center is from my dorm. It sounds like you had something good there, though, and I'm glad to hear it.

    Thanks for the good luck! :)

  3. Thank you for the advice about adapting tasks! My husband is really good at thinking creatively (even though he swears he's not creative)! I've also been working on a system (with help from my acupuncturist) that I can use to rate my daily energy and mind clarity levels. We'll see how that pans out.