I've been feeling so good over the last few weeks. So good, in fact, that I began to think that maybe my Lyme and Ankylosing Spondylitis (a mouthful, I know, so let's call it AS) were in remission, or maybe it's all in my head. (Nevermind that the diagnosis has been confirmed by MRI, blood work, and 3 Rheumatology departments, including Johns Hopkins and the Cleveland Clinic.)
I felt great, gosh darn it... so I made plans, set big athletic goals, and was just humming along at a happy and energetic clip. This tends to happen to me. I get a good couple of days or weeks, and then BOOM! something flares up and knocks me on my butt. When I feel good, I think Lyme/AS will never come back. When it does return, I wonder how this body is going to last for another 50 years.
I'm a complete dichotomy. I have a permanently disabled placard in my glove compartment and an Ironman sticker on the back of my car. They are both mine, and I claim them equally.
Keeping the Invisible Illness Invisible
Most of the time, my health conditions are invisible to the outside world, and that's how I like to keep it. I really do think of myself as a fit, healthy mother. I've also learned to hide pain, whether it's chronic or acute. Who wants to be friends with someone who is constantly complaining about ailments? I wouldn't even want to be around myself!
I've got a funny story about injuries, and how far masking these little aches can go. 3 years ago on a Friday, M1 was swimming the 500 for the first time. I had toddler M3 with me, and she was holding my hands and jumping off of the bleachers during warm-ups. Trust me. It's a very good way to keep a wiggly 2.5 year old busy during a long, humid indoor swim meet.
As I chatted with another mom, little M3 jumped straight into my face...and I knew immediately that my nose was broken. It was embarrassing because I barely knew the person I was chatting with, and I also didn't want to scare M1 and make her think she had hurt me too badly. She has a very tender and sensitive heart and would be totally traumatized. I wiped my nose, blinked a bunch of times, and went onto the pool deck to count laps for M1 while also restraining a very wiggly M3 as she tried to escape and run away.
I didn't actually get around to going to urgent care until the following Tuesday, when I finally had all 3 kids at school. (Remember when the kids actually went to school?) Brett fully admitted that my radiology report was a bit of a shock, because "nobody walks around for 4 days acting totally normal with a broken nose".
That's the thing, though. Something always hurts. I mostly try to ignore, work around or through pain. Who wants to hear about someone feeling crappy ALL day long? I sure don't! I am a freaking Ironman...and as with a marathon or a long swim, it's usually better to smile, grit through it and say "I feel great" even when you don't.
I actually think my experience with chronic pain has made me a much better endurance athlete. You have a choice to give up or to keep plugging along toward the finish line. Either option means stuff is going to hurt along the way, but it's typically worth it to keep moving.
By the way, M1 swam his 500 brilliantly, with a negative split. Though he came in dead last, he was also the only 8 year old brave enough to tackle that distance. If my eyes hadn't already been tearing up because of my broken nose, they would have by the end of that event because I was so freaking proud.
The Other Side of the Dichotomy
Sometimes, my AS turns into a giant avalanche and becomes pretty impossible to ignore, like it did last week. I woke up Monday morning and my left eye was bright red and throbbing. Uveitis...another fun sibling in the AS family. It comes on suddenly, and without warning. I'm fine when I go to bed, and blind in one eye when I wake up. It hurts like hell, and requires an emergency visit to the Opthalmologist, because if left untreated can cause permanent vision loss. Goodbye, plans for the day.
So. Freaking. Annoying!!!!
It's not so much the aches or the constant doctor's appointments that annoy me. It's the fact that I have so little control over my own life, and worse...I hate being unreliable. Last-minute changes to carpool plans, bailing on (pre-COVID) social obligations, lining up help and Brett needing to take off work during my many surgeries...I feel like I let so many people down. I also feel like a big fraud, because how can I rock out an aggressive Master's swim practice and also have a "disabled" parking tag?
Am I a dichotomy, just a hypocrite, or worse, a faker who "gets sick" when I want a convenient "out"? I certainly worry that's how it appears.
What "Taking Care of Myself" Means
I know, and my Rheumatologist knows, that the main reason why I remain as functional as I do is because I take excellent care of myself. Exercise is the primary way to combat Lyme disease and also AS. It lowers inflammation, keeps CRP at bay, and prevents me from turning into the tin (wo)man. On days I feel like staying in bed in the fetal position, the best thing...the VERY best thing for me to do is to drag myself to the pool, or to take a walk that turns into a jog that turns into a run.
But then the self-doubt monster creeps in. I worry someone will drive by and think to themselves, "I thought she wasn't feeling well." Sometimes when I share pictures of race I just completed, and I will get a well-meaning text: "You should slow down." or, "Do you think your knee surgery was because of all that running?" or "Maybe your back wouldn't hurt so much if just took a break from exercising."
Unfortunately, it isn't that simple. It isn't a normal case of "being tired" or needing some recovery time from athletic pursuits. I wish I knew what caused my body act like a stormy sea instead of a tranquil lake. Maybe someday I will be able to kick it into remission (although my MRIs tell a different story) or maybe I can just out-swim it. What I do know is that no exercise means I become 96 years old overnight. If you see me hobbling around, chances are I haven't been in the pool for a few days.
I am also fanatical about eating an anti-inflammatory diet (conveniently, it agrees with my 2 celiac kids' diets), and I don't/can't drink alcohol because it flares me up terribly. But instead of feeling awesome about my no-sugar, no-gluten, no alcohol diet and blogging about my perfect lifestyle habits, I'm totally embarrassed and generally try to hide it.
It's actually not a lot of fun to have nothing to add when people talk about wine o'clock or COVID cookies. I guess it could feel kind of cool to say "I can't relate" in a superior sort of way if you are in doing Dry January or a little 30 day challenge...then I might feel cute and whimsical sharing pictures of water in a wine glass and cauliflower brownies.
Trust me, though, when you don't have a choice but to take all that good stuff out, it becomes less of a source of pride and more one of shame. To be human is to share tales of our guilty pleasures, those wine memes are everywhere, and my inability to add my own funny hangover story when my friends are laughing about wine and kids is yet another little reminder of how much my diagnosis has infiltrated my life.
I wish I could just keep it all invisible.
Anyway, here's to a better week soon, and to a return to talking about athletics and cold water instead of being a Permanently Disabled Ironman.
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