Wednesday, April 7, 2010

When Your Body Calls, Who Responds?

“[…] And if you call, I will answer
and if you fall, I’ll pick you up
and if you court this disaster
I’ll point you home […]”

- “Call and Answer,” Barenaked Ladies

One of my worst fears was recently realized. I was “sick” with my boyfriend (the doctor). I got a lupus headache that totally ambushed me. It was a bad combination; my methotrexate day, time of the month, rain, and no coffee (TMI? Sorry!). I thought I had caught it in time, but before I knew it, I was laid-up on the couch, rolling around with nausea and dizziness, wishing someone would stop the incessant pounding that was pervading the right side of my head and my brain stem (or kill me).

In my past relationships, for whatever reason, I was never in the presence of the person I was seeing when I was flaring or not feeling well. And I dreaded the day when this actually happened.

But he didn’t run away. He didn’t coddle me to death, either. He was the perfect balance of caring and supportive, and hands-off. I felt terrible because he was leaving town for a week the next morning, so needless to say, the romantic night I had planned for did not go the way that I’d hoped.

But I guess that’s the way these illnesses work. If they were predictable, they wouldn’t be so damn frustrating and annoying. If they weren’t so pervasive, I would never have to cancel plans, plan like crazy, or totally kill a romantic evening.

I had tried not to open myself up to the possibility of him ever seeing me this way, but that’s not quite realistic, is it (especially when we are seeing so much of each other these days)? And the fact of the matter is, when it happened, there was nothing I could do but be a sitting…er, laying…duck. I didn’t have a choice in the matter. I was down and out.

I apologized a million times for the way the night had gone. But he was just glad that I eventually felt better. Better enough, in fact, to finish the three-quarters worth of uneaten dinner that he saran-wrapped and kept waiting for me at the table.

A few days later, on the phone, I could feel him going into “doctor mode”, asking me how often I get headaches like that. But he can’t help it, and I’m better for it. It may make me take some of my symptoms more seriously, and view them as less fluke-y than I have done previously.

And I do feel like there is a lesson to me in all this. And it’s a lesson I feel I should have learned already. When my body calls, I need to respond. Truth be told, I had rib pain a few days before, I had been feeling a bit run down, but I kept plugging away. I am a bit frustrated with myself because I feel I keep saying that I’m totally blindsided by symptoms when the reality is that there are signs there, signs that I opt not to notice, for whatever reason, until after the fact.

But just as it was hard to get diagnosed until I was dealing with a whole constellation of symptoms, it’s hard to be proactive when I’m not sure exactly what only one symptom means. One symptom does not a flare make. At least I don’t think it does.

And with the right person, anything is possible. Worst fears are no longer worst fears. And bumps in the road are just that. They’re no longer insurmountable if we can get through them together.

So for now, we’ve survived round one. We made it through the first incident of me needing to be scraped off the couch. It wasn’t fun, glamorous, or sexy, but in some ways, it felt totally natural, like we’ve been dealing with this stuff as a couple forever. It made me realize, for the first time, that I can really get through this, especially if I have someone by my side who is willing to stay the course with me.

And realistically, this kind of care and concern will be reciprocated. While he probably won’t feel good far less often than I will, I’ll be there for him, even if it is just to tuck him into bed.

The truth is, it’s definitely nice to have someone around in moments when I’m not feeling my best. But ultimately, first and foremost, when my body makes the call, I need to be the first to respond.


  1. hey i am new to your blog, and i just want to say that it gives me a lot of hope. i've really been struggling with the weight gain and moon face from the prednisone. it makes me feel ugly and i feel like nobody would want to put up with an ill person. but it's great to know that there are good, supportive people to be found who can be in a relationship with someone who has lupus without totally freaking out.

    even more importantly, i think it's important that you're learning to listen to what you're body's telling you. i honestly think that's one of the very hardest parts of this disease..

  2. You know, I'm sorta glad the "worst" happened while Boyfriend Doc was there with you. And glad that he handled your being so sick with such kindness and finesse. As you said, it's hard to know when a tough day is building up; niggling symptoms don't always mean you're headed for the brick wall. Good for you for not berating yourself for missing them.
    You're doing just fine, and your sweetie passed the "sick" test with flying colors. I'm very happy for you, Leslie.

    Hope this finds you feeling MUCH better.

  3. I just the call to be there seperates those who are not worth it. He loves you, RA, lupus and all and that is important. He is keeper!

  4. He sounds like a wonderful person! I'm glad you found someone so supportive!

  5. I am blessed to have a husband that is great about helping me when I am having a horrible symptom day. However, he hasn't quite mastered the ability to take a step back and let it take its course til it's over. He hovers a little too much. It so great to hear someone else really understand that side of things! Thanks so much!

    Renee' (aka Shalunya)

  6. Have you ever thought about making a list of your "early warning signs" and then the steps you want to take when they occur to avoid them building into a flare? As best you can, of course, sometimes the flares just flare.

  7. Sounds like you have found a winner :)