This morning, Gretchen Rubin, author of The Happiness Project, posted the following question on her Facebook feed:
Happiness Question: Do you consider exercise to be a treat or a chore?
While I might have considered exercise a chore in my life before my Lupus/RA diagnosis, it is now definitely a treat. While once-upon-a-time my aspirational images came from glossy fashion magazines, I now gaze longingly at the running, stretching, dancing, and climbing women in magazines like Self and Women’s Fitness (the same smiling women who can be out in the sun without a hat, long pants, and long sleeves). I flip through the Athleta catalogue, mourning the days when I had enough energy to run 12 miles and go to three yoga or dance classes in a week– which is to say, meet the guidelines for 30-60 minutes of exercise per day. I have the schedule for my local dance studio open in my browser, just on the off chance I feel up to a yoga or ballet class (this actually happens about once every six months.). I’m lucky that I haven’t gained more than a couple of pounds on prednisone, but that doesn’t stop me from grieving from the active, capable body I used to have.
Those of you who have been following this blog for a while may remember my cranky response to a small study on exercise and RA patients that received a lot of media attention last winter. The conclusions of the study authors seemed to suggest that RA patients as a whole were less active than the general population, and that this was the result of their attitudes and beliefs about the benefits of exercise, not their pain level or ability to exercise. The mainstream media took these conclusions and ran with them, trumpeting headlines like “2 in 5 RA Patients Sedentary.” This is, in my opinion, a gross oversimplification of some complex findings. One, RA patients, when grouped by age, are only slightly less active than the general population. Two, the findings in the study are skewed by a large number of older patients, a population that a) tends to be less active in general; and b) includes many individuals who received an RA diagnosis during the 1980s (or earlier), when the general consensus in the medical community was that exercise was more harmful than beneficial to joints affected by RA. So rather than trying to shame all RA patients into more exercise, which downplays the fact the many RA patients continue to deal with pain and fatigue, even once they reach so-called “clinical remission,” I think the study suggests that older RA patients need outreach to encourage them to be more active. The rest of us who want to exercise and can’t? I don’t know what the solution is, except better treatment options and access to those treatments, less reliance on broad-spectrum immunosupressive drugs like methotrexate that sap energy, and more access to gentle exercise modalities like swimming and tai chi.
I’ve always been an active person, if not an intensely athletic one. I played soccer as a child until I was sidelined by arthritis in my ankles and knees in my teens. I continued to dance, on and off, into my late 20s, and I took up running and hot yoga during a particularly energetic period in my mid-20s. But now fitting in exercise requires a complex balancing of my time and energy. In order to find the energy to spend 30 minutes on the elliptical machine or in the pool at the gym, or attend a gentle yoga class, I have to take into consideration that it will probably sap the rest of my physical energy for the day. I weigh questions like “If I go to the gym, will I have the energy to prepare myself food, or catch up on housework when I get home?” “Will the benefits outweigh the inevitable pain?” Most days the answer is no, and I must prioritize my basic needs above exercise, which has become a luxury. (I have begun to count “doing laundry” as a form of exercise—there are two flights of stairs involved). While I have had peaks and valleys of energy during the past two years, my average leans more toward “fatigue”. I hope some day I will find a treatment that allows me to return to the realm of the athletic. In the meantime I eat well, but I wear my yoga pants at home and gaze longingly at the Athleta catalogue from the couch.
How do you stay fit with chronic illness?
“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom” —Victor Frankl
I’m not sure what has changed in the past few days, but I feel like I’ve gone from a mental space of worry to one of relative peacefulness and acceptance. It doesn’t feel like anything has changed inside of me; in fact, I feel just as lousy as I did last week—the usual MTX gripes and joint pain along with a bonus infection. But something has definitely shifted.
I’ve been dancing since I was three years old. That’s over 90% of my life. Around the time I turned 10, I decided that what I really wanted was to be a ballet dancer. I spent hours every day in dance classes, not just ballet, but other kinds too, and I put every once of energy I could find into it. The first time I had a major injury, which in retrospect was probably a disabling flare of inflammatory arthritis, I was 12. My knee swelled up and the soft tissue began to calcify, so I had to take 6 weeks off from dance. I didn’t mind getting excused from middle school PE class, but having to sit out ballet class was the worst. I had just been allowed to start wearing pointe shoes the year before and it had been one of the proudest moments of my life.
|Dancer’s Shoes by Neville Elder|
Whether you’ve seen Black Swan or not, you probably know that ballet is a punishing art form, calling for an incredible amount of work, dedication, and control. The body standards for professional dancers are harsh and unforgiving, and many many dancers admit to controlling their weight through unhealthy means like laxatives, heavy smoking, and disordered eating. The funny thing is that I never fell into those habits. I was naturally thin, I had strong muscles, innate musicality, and I could forget myself in the challenge of a dance class like nowhere else. My freshman year of high school I was in a production of the Nutcracker with a local professional ballet company and I idolized the older girls who danced the principal roles (while also working on college degrees— I remember them reading psychology textbooks backstage between dances). A year later, I got sick again and then went through a growth spurt and wound up at nearly 5’10”. I knew I wasn’t going to be the next Suzanne Farrell, so my ballet career took a backseat to my interests in theater, music, and writing, but not without a great deal of mourning. I’ve continued to take ballet classes on and off as a adult and it’s one of the things that I’ve missed most during the past 9 months that I’ve been acutely sick. Dance requires and engages every ounce of my attention and creativity. It makes me feel alive and grounded in my body in a way that few other experiences do.
The girls in the video below describe their techniques for “breaking in” their pointe shoes. I had my own technique, involving rubbing alcohol and a lot of bending, plus tape for my second and fourth toes and a special way of sewing on my elastic. In particular, I like that the video shows the reality of dancers’ feet. The irony? Arthritis has done far more damage to my feet than ballet ever did. I now look like I have the dancers’ feet I might have had, but from autoimmune arthritis, rather than years of classes and rehearsals.
In looking for references to Suzanne Farrell, I discovered that George Balanchine’s fourth wife, Tanaquil LeClercq, whom he divorced to try to woo Farrell, was struck by polio at the age of 27 and paralyzed from the waist down, ending her dance career. The Wikipedia article about LeClercq describes the horrifying irony (in retrospect) of her first dance with Balanchine:
When she was 15 years old, George Balanchine asked her to dance with him in a choreography he made to be performed at a benefit for a Polio charity. In this ballet, Balanchine was a character named Polio and Tanaquil was his victim who became paralyzed and fell to the floor. Children tossed dimes at Le Clercq, whereupon she got up and danced again.
|Tanaquil LeClercq, 1947 by Irving Penn|
I suppose none of us is immune from broken dreams and lost opportunities, with or without chronic illness. But life goes on (I hope), becoming rich in new ways if we can be open to it. I would, however, prefer no one throw dimes at me during the process.
The following lines, which make up the seventh section, “Pardon,” capture so well how I feel in the middle of a bad flare and then afterward:
A piece of burned meat
wears my clothes, speaks
in my voice, dispatches obligations
haltingly, or not at all.
It is tired of trying
to be stouthearted, tired
We move on to the monoamine
oxidase inhibitors. Day and night
I feel as if I had drunk six cups
of coffee, but the pain stops
abruptly. With the wonder
and bitterness of someone pardoned
for a crime she did not commit
I come back to marriage and friends,
to pink fringed hollyhocks; come back
to my desk, books, and chair.
All of this is at the forefront of my mind tonight because I saw my rheumatologist today. He’s not pleased with my progress on the Plaquenil (I’m still needing prednisone or massive doses of ibuprofen to keep the inflammation down) and wants to add Methotrexate. Based on my response to the meds and my blood work, he’s added rheumatoid arthritis back to the table in terms of diagnosis. So I may be looking at an overlap syndrome/mixed connective tissue disease diagnosis. I have too many symptoms and they refuse to sit neatly in a single disease category. My hunch is that most of us with autoimmune disease are actually like this, but it’s not the way medicine wants to work. Doctors want neat distinctions between separate categories. Taxonomy is comforting. Hell, I was comforted just having a name to give to my symptoms, even if it was “lupus.”
Realistically, I just want to feel better, and if it’s going to take MTX to do that, then I’m willing to try (though my dad had a terrible experience with it, so I’m hesitant). But at the same time I had been consoling myself for the past six months with the idea that with lupus at least the joint involvement would be less damaging, and that with SLE limited to my skin and joints, I had a much better prognosis in terms of lifespan and quality of life. Small consolation, but it was there. Now my silver lining has been ripped away, and I’m not sure what to think. I am indeed “tired of trying / to be stouthearted.”