Thursday, May 20, 2010

The Ups & Downs

Yesterday was one of those days...a disappointing "one step forward, two step back" kind of day. You know those days, don't you? Even if we're not talking about chronic illness here, I think this is a pretty universal phenomenon.

Sometimes my pain makes it hard to fall asleep, but it consistently makes it hard to stay asleep (especially in the early morning hours when my body is the stiffest.) The burning, the's like a yippy little dog asking to be walked at daybreak (and biting you until you do it.) That metaphor actually comes from a recurring morning dream I have during flare ups. I usually fall in and out of sleep from 4am-8am, dreaming that dogs are biting me in the joints that hurt the most (good thing I'm in therapy, right?) ;) In any case, I wont feel better until I get up, shuffle around a bit, and take all my medication...the most effective being Tramadol (a fairly mild, prescribed pain killer that I swear by).

The day before last was a "good day" - the first real one in months. Just to add to the unpredictability of it all, it was also pouring rain (a factor that usually makes me feel my worst). I have to say, Spondylitis definitely has a way of keeping me on my toes. I knew it was a good day because it was the first time in so long that I was able to sleep past 6:00 or 7:00 am. My pain didn't wake me. This may not seem like a huge deal, but after enduring a painful flare up for weeks, these little bits of relief seem tremendous.

I'm so thankful for these rare days that I tend to quickly proclaim them "good days" to the nearest person who will listen (like I just did it in this post) and carpe diem...pick an activity that I wouldn't be able to fully enjoy otherwise and just go for it. On these days, I sometimes (OK, most of the time) overestimate myself and try to do too much. That particular day was also day 3 of the annual NYC stationery trade show. So I excitedly headed in to cheer on my mom and aunt who, about 5 years ago, started an amazing business called Someday Designs. They make custom wedding invitations, announcements and correspondences and, while I know I could be considered majorly biased, I'm just blown away by their work (just like everyone else who sees it). During this show, they sold all 50 of their books to stores around the US in the first 2 days and have a pretty hefty waiting list. I'm a very proud daughter/niece for sure... (more about the business later)

As much as I enjoyed the day and couldn't be happier that I witnessed their success first hand, I walked around way too much. In the back of my mind, I knew it was too rainy to be so active, but I pushed myself because the alternative (staying at home or in bed) was not really an option to me - not that day. I think there is also a big part of me that likes to conveniently forget that I need to be more careful. However, the following morning I remembered. I woke to that familiar sharp pain, as if my body was saying, "What exactly were you thinking? You still have Spondylitis." I can't say I wasn't disappointed...I always am. It's hard to feel like just when you take one step forward, reality creeps in and pulls you two steps back.

As I'm writing this, I'm wondering why I insist on seeing it like this day after day, flare after flare. Why can't I just learn to give myself a break? But really, it' easier said than done. No matter how many years I live with Spondylitis, I think it will always be a learning curve just as it probably would be for anyone who wants to be in the driver's seat of their life (as I've put it before). I have plans and dreams. I have a career to work toward. I have a family to hopefully start someday. I always want to have new experiences and make new memories. I want to take my friends up on offers to hang out, I want to dance at night without considering the repercussions in the morning,exercise without the help of a physical therapist, travel without fear of pain. But I need to get it through my head: there will always be ups and downs. Whether I like it or not, it's all part of my life now and forever.

In my post "Busy Bee", I wrote about a rather large step I took in extending my masters program from 2 to 3 years. I did it primarily so I could take better care of myself. Giving myself permission to take it easier was a new experience, but it was absolutely the right decision and I'm proud that I made it. Just because I have to do things differently than a healthier person, doesn't mean I'm doing them any worse. I have to remember that and, as hard as it unrealistic as this might seem on more painful days... I'm actively trying to push disappointment out of my mind whenever possible. When "good yesterdays" fade into "bad todays," I'm reminding myself it's the name of the game; that it wont be this way forever. After all, If I'm going to live a fulfilling life, I need to learn to be fulfilled with my own path - the path that Spondylitis has influenced.

As I've said before, chronic illness by definition isn't going anywhere, so it's my thinking that needs to change. No one promised me (or any of us) a smooth road, so we must pave the our own way.



  1. Maya, you're really amazing. And such a great writer. I hope that people all over the world who are affected by chronic illness - either because they have it or know someone who has it - read your blog. Because your experiences, your outlook, and your words are inspiring.

    The blog looks beautiful, too. Great job! I'm proud of you for this and for everything you're going through.

    SO much love-

  2. Hi Jill,

    Thanks so much for your great comment - it was very thoughtful. Made me feel more motivated to keep goin' :)


  3. Maya--

    I just had the pleasure of reading through your blog and am so inspired by your words. It's really incredible to hear your outlook on your situation and what it's taught you and continues to teach you along the way. I am so excited that I met you and can't wait to hear more about this journey (and have another fabulous brunch - or another plan)!


  4. isn't it amazing they way we can overextend ourselves on a "good day"? but i think it is a sign of being generally positive & optimistic.