Re-Calibrate, Then Restart

Re-Calibrate, Then Restart

“Um, you’re going to re-calibrate your definition of ‘feeling sick.' Starting now,” one of my doctors said to me this week, clearly not impressed with my nonchalance.

The thing is, I wasn’t even being nonchalant. Not purposely, anyway. I was simply conditioned to be oblivious.

I’ve said before how so many aspects of living with chronic illness are universal—no matter what your particular symptoms or conditions are, there are some static themes. The more I write and the more experiences I cull together from other patients, the more firmly I believe this.

But it’s larger than that. So many things about living with chronic illness are universal, period. Whether you’ve been sick since birth or have never had more than a cold your whole life, still emotions and patterns resonate.

Recent events and twists and turns in my health status have made this especially clear.

Example #1, Stuck in a rut-ness: Is it me, or is the tendency to get stuck in a routine or pattern directly proportional to the longer and colder a winter is? Indoor workout routines get dull and less effective, piling on sweaters and layers of pants gets boring and repetitive, getting up in the morning when it’s still dark gets old fast. Yet there’s not much we can do besides hit the “repeat” button and keep on going.

Personally, my winter rut has been one punctuated by infections. While respiratory infections are an occupational hazard of being me, this winter has been beyond the norm. Since October, I haven’t gone more than 10 days without an infection. Bacterial, viral, ones that fester in my lungs and ones that invade my upper respiratory system—it’s definitely been an equal-opportunity season.

So hopefully it’s somewhat understandable that during the past two weeks when I felt exhausted, feverish, and had muscle and joint pain that I attributed to something else (more on that in a minute), it didn’t occur to me to do anything except go to work and keep doing what I needed to be doing? And that it didn’t occur to me that it could be the flu?

“I’m just gotten so used to feeling like I have an infection that I no longer stop to think about it too much,” I told my doctor. “It’s beginning to feel like normal, or at least not that sick.”

Hence the “re-calibration” comment, some in-office nebulizer treatments, and orders to stay in bed for several days.

“But can I teach my last class before spring break first? It’s in an hour,” I said.

She was not amused.

Example #2, Adaptation and Loss: Think about a loss in your life. Was it a bad-break-up? A close friend or family member moving away? Everyone’s experienced what it’s like to have a constant disappear from your life, and the adjustment period it takes to get used to its absence. Sometimes, it isn’t till you stop and realize you’re no longer consciously thinking about it every day that the absence is real.

Allow me to turn this around a little bit. Four years ago when steroid withdrawal caused my adrenals to crash, constant muscle pain and overwhelming fatigue became a part of my life for the next three years. The burning, cramping pain kept me awake at night and when my legs turned to “concrete” mid-step, I could be stranded. I got used to living like that, to never knowing when my body would halt, to walking slowly and trying not to wince.

My recovery was gradual, very slow, but as the months and years went by and my adrenals recovered, I inched closer to the baseline I had before the crash.And before I knew it, I wasn’t even thinking about that kind of pain anymore. I wasn’t planning errands and factoring in the “concrete syndrome.” I was just being me, and I wasn't even conscious of the change, of the absence of pain anymore.

So it wasn’t until that familiar burning pain, that last step of the staircase that seemed so far away, that slow, sluggish gait came back a couple of weeks ago that I realized how far I was from that place four years ago—and how terrified I was of ever going back to that constant. (The IV infusion of solumedrol every six weeks for years was also something I was loathe to repeat).

The end result? My adrenals are functioning a bit lower than they should be, but they’re chugging along. Since my adrenal depletion is the result of infections this time around, my doctor is confident they will recover on their own, though it may take some time. And while it may take several more days to settle down from the flu, that too will pass.

So as I face down a spring break filled with catch-up work and recuperation, I have some goals. I need to calibrate my idea of what being acutely ill feels like and start fresh—this means not ignoring fevers or assuming I know what’s wrong when I don’t. No more ruts. I also need to squash back my fear of the adrenal situation, because it is mild and temporary and I have the knowledge and resources to do what my body needs.

It might not be spring for several more weeks here in Boston, but I’ve done some mental spring cleaning.

After all, spring is synonymous with renewal, right? And that's a universal.

Homeostatic Haywire: How Steroids Still Sideline Me

Temperatures are a little off right now. It certainly looks like Christmastime in Boston—the trees downtown are lit, wreaths adorn street lamps, and the Frog Pond is iced over for skaters. Yet I have only had to wear my winter coat and gloves on one occasion, I haven’t seen my breath in the cold once, and just this weekend I spotted people wearing flip-flops. Despite all the griping I do when I have to shovel my car out of the snow, the unseasonably warm weather is, quite frankly, disconcerting.

Equally disconcerting? My internal temperature gauge, which is mired in its own homeostatic haywire. What was once a once or twice a week phenomenon now occurs almost nightly: despite layers of clothes and the fact that our condo’s pre-set heating system is blasting even though it’s warm outside, I get cold and clammy. Actually, it’s more like I am dripping in sweat. My face turns deathly pale, the palpitations begin, and I can barely string sentences together I am so exhausted. Sometimes I feel it coming on, other times it can happen within a matter of minutes. Either way, when it hits me, I am totally drained for hours, sometimes days.

When my temporary adrenal problems improved after two years, I’d been hoping these weird daily drains would dissipate as well, but no such luck. Certainly, plenty of things could contribute to this upsurge in symptoms—multiple current infections, chronic fatigue, the end-of-the semester crunch and general holiday craziness. But when I discussed all this with my doctor last week, it turned out my favorite ghost still haunted me: steroids.

Now, I’ve railed about steroids, deplored them, and alternately owed my life to them in previous posts, so I’ll save that for another time. Since I’ve cut way, way down on my steroid use in the past two years (oh, the wonders of having correct diagnoses at last!), I guess I was hoping the havoc they wreaked on my body would magically disappear. But I’d blissfully forgotten a key lesson I learned years ago—the effects of steroids linger in the body for long after we’ve stopped taking them. It may be a few months since I’ve had oral or injected steroids, but that doesn’t mean my body isn’t feeling them.

“Think of it as your body fighting to regain control over the functions steroids have controlled for so long. When your body wins, you feel okay. When it loses control, things get out whack,” my doctor told me.

I was on steroids continuously for more than twenty years and am off and on them these days, so how much longer will they sideline me? I can’t be sure—no one really can be—but one thing really reassures me: unlike most of things wrong with me, this might actually go away some day. Assuming, of course, that I can avoid having to take steroids in the first place. I’ve been through this cycle many times, but at least I am getting closer to achieving that goal than ever before.

Till then, while Boston flirts with a decidedly un-white Christmas, I’ll keep piling on the layers and hope for the best.