The Pain Isn’t the Worst Part

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The worst part about this autoimmune disease isn’t the joint pain. Most people my age without children are out living it up: drinks at bars with friends, casinos to celebrate birthdays, rock concerts just for the fun of it, hiking in the fall. All of these things I can’t really do anymore. Very rarely is it that I have the energy or feel physically well enough to participate in, well, life.

This weekend is a perfect illustration.

Right now, I’m in a flareup; even though I’m on medication, it doesn’t completely get rid of the fatigue and joint pain. It also doesn’t help that I’ve got a cold on top of the flareup. (Yup—the one-day sickness that everyone else had has morphed into a full-fledged cold for me.) I’m exhausted. Plus, between painsomnia and now being sick, I haven’t had a good night of sleep in a few weeks. Still, on Friday I pushed myself to go to my family’s annual girls’ cookie baking date.

By the time we finished, though, I was exhausted. The cold had moved south; it felt like I had a frog in my throat and an elephant sitting on my chest. I was supposed to go to a surprise birthday party for a family friend that evening. The problem was, I knew if I pushed my body and went, I’d definitely be useless all day Saturday.

And Saturday—today—is the second launch party for Phat Lip, the art magazine that my husband is a partner in.

I missed the first launch party because, you guessed it, I was flaring and didn’t feel well enough to go. I never feel well enough anymore. I know Mike doesn’t resent me for it, but I can tell it bums him out that I barely attend his events. It bums me out.

Before the launch party tonight, we’re supposed to go to my parents’ for a homemade pizza night. And with the way I’m feeling right now, I doubt that I’ll make it to either gathering. The cycle will start anew.

Mike will go out without me, and I’ll stay at home lonely and missing out.

I always have to choose: between sick or sicker; between washing my hair or cleaning my toilet; between getting much-needed rest or getting work done; between participating in life or maintaining the tiny bit of health that I have. The best metaphor I’ve ever heard for this is Christine Miserandino’s spoon theory.

So many people don’t get it. Those that used to text me to make plans stopped trying. I’m flaky, cancel-at-the-last-minute girl. Others rib me for never seeing me. I’ve even been guilt-tripped several times. Thankfully, there are two people in my everyday life who truly do get it, and that’s only because they too have chronic illnesses.

The holidays for me are the hardest, because I just can’t do the house hopping thing. I don’t get to connect with much of my family and friends. This time of year is rough in general, because the cold weather, my flaring body, and my compromised immune system keep me holed up. I miss out on everything, and I can’t risk pushing through, because if I do I’ll pay for it for days afterward.

But it seems to me that there’s an even greater price, one that I can’t seem to recoup.

That—the missing out—is the worst part of being chronically ill.

Powering Through Fatigue

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I’ve been bone tired these last few weeks. This is pretty normal for me, for this time of year. Still, I was surprised. I’ve been on Sulfazine for several months now and, up until recently, it’s been keeping my arthritis symptoms in check. But in the last week I’ve been having debilitating pain again—mostly in my lower back, right hip, and hands. The pain I can deal with, for the most part. It’s the fatigue that’s killing me.

It doesn’t matter how much sleep I get or how easy I take it. Lately, by about 8pm, I’m eyeing my bed. Doing simple things is a real chore.

At first, I thought it was depression. (A combination of badly managed meds and recent trauma headlocked me into a really bad episode.) But the effects of coming off the meds waned about a month ago. I’m feeling more and more like myself. It’s this exhaustion that I can’t kick. I’m starting to think that it’s “just” autoimmune bullshit.

This is disheartening, to say the least. I really thought Sulfazine was working.

It’s also annoying. I really want to get back to my normal, to days of writing and evenings of relaxing. But I’m wiped as soon as my eyes open in the morning. There’s a very limited window during the day when I have enough energy to do anything. By the time five o’clock rolls around and I’m due to start dinner, I’m sapped.

It’s the main reason it took me weeks to finally put up our tree. And then I went to bed early. I couldn’t even enjoy my work. I’ve been trying to power through, to make jokes about how tired I am or to ease people’s concerns. I’ve tried to convince myself that maybe I just needed the extra rest. But this fatigue is all too familiar, and I can’t deny it anymore.

Which makes me wonder. Last winter, I spent most of my days in bed, ridden with pain and exhaustion. I often could barely walk. I stubbornly stayed at my part-time job as long as I could, and then I couldn’t anymore. I really hoped those days were a thing of the past.

I want to shake my fist at the universe. I really can’t get a break.

Still, I’ve got my Christmas spirit on! I brushed the dust off a short story I wrote a few years ago, starring Jett. You can read it here (it’s free). 🎄