Sunday, March 02, 2008

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.


Never That Easy said...

As usual, Laurie, spot on!

Having to constantly redefine my 'new normal' is a frustrating and complicated part of having a chronic illness. For example, talking with my grandmother the other day, she said that I always answer the question "how are you?" with "I'm doin." And that that really provides people with no real clue. I wanted to say that I really have no clue either, but it made me think: I can't say I'm fine, because I'm never fine. Ever. It always hurts. But I can't say I'm having a bad day, because for me this is a good day. But not a good day that would register as such for anybody but me. and that is where my head decided it wanted to explode rather than continue down the rabbit hole.

My definition of sick has certainly changed, and my doctor constantly tells me "you should have come in sooner!" But it's so hard to decipher what's normal for me, and whether the extra aches and pains are just a flare or something more dangerous (she says, speaking to you from the wilds of walking pneumonia.)

You always manage to say things I meant to say, but in a smarter way. ;0)

Anonymous said...

You nailed it! One of my biggest adjustments was to stop responding to every little itch and ache as if it were a dam bursting and unleashing a tidal wave of the pain and misery I felt in the "before" time, before I finally found my care safety net.

Anonymous said...

Laurie, I certainly agree with you and your comments and those of "never that easy". I have had to define and redefine what is "normal" for me so many times that I'm not sure I know any more what is normal for me; it changes to frequently! The same with adaptation and loss, I seem to have to keep loosing and readapting so often that my "original normal" life seems like a dream or perhaps a fairy tale that I read. Trying to cope,adapt, redefine and just function daily sometimes becomes such a chore; I try to maintain a good outlook and not be a complainer but some days it is hard. That "how are you?" question is one I hate! How do you answer it truthfully? Most people don't really care it is just a conversation started or some such thing and then the ones who do really care about how you feel have no true comprehension of the pain you go through or your struggles. So, answering either group is hard; to the first group I usually say "ok" and to the second group "I'm here". And they sort of understand

Anonymous said...

Laurie, you are amazing and you are more active, socially, physically, and professionally, in your "new normal" state than most others are when they are healthy. Hopefully, you will be able to take some time to relax over your spring break.

Thinking of you and planning your book tour over here, ahem, in Dublin, for sometime next fall.

Carol said...

Laurie, great post! Thanks for articulating the normal vs new-normal experience of those with chronic illness.

I'd recommend Kathleen Lewis book "Successful Living with Chronic Illness", written 'back in the day day' before anyone wrote anything about living (not dying) with chronic illness. I have had MCTD (Lupus/Scleroderma) for 22 years and she expresses some similar helpful thoughts.

God bless you-
Carol / Maryland

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