Taper Town: Don’t Know What You’ve Lost ‘Til It’s Back

I wake up curled around the pain.

Burning, it thrusts me from deep sleep into semi-consciousness, and I lie there panting, knees to abdomen, elbows to chest, face to fists. There is only pain.

I become aware of myself. Language seeps back into me. “Dying,” I think, and, a moment later, “Ulcer.” I uncurl and roll over, wincing, and drink deeply from my ever-present water bottle. The fire seems to spread, and even as I remember the antacids in my medicine cabinet, my body pulls me back into its protective curl and I obey, losing touch with everything but the bright and fiery pain.

Light presses against my bedroom windows when the pain finally loosens its grip enough for me to shift, and I force myself up and to the medicine cabinet, my pharmaceutical armory. Tums for now. Pepcid or Zantac for later.

The fire burns all morning, so I skip things I know contribute to peptic ulcers. Coffee. NSAIDs (specifically, Aleve). I drink milk and then read that drinking milk is counterproductive for ulcers. The pain recedes a bit when I eat toast. It comes back when I take my morning meds, including 4 mg prednisone, another ulcer instigator but one I am terrified to miss. The gnawing in my gut grows tolerable as the day slogs on. I skip my Aleve that night despite the stiff ache that has settled into my bones.

The next morning, getting out of bed takes more effort than I can muster. My joints, which began to ache and stiffen two weeks into my move to Taper Town, are locked. I cannot tell which is worse, the deafening pounding in my skull or the silver stabbing sensation that runs from the back of my head through my eye.

“Bad day,” I tell my husband as he dresses for work. “So much pain.”

“Go back to sleep,” he advises, and I try, cranking up my heating blanket and writhing to find a non-tortuous position.

Late morning finds me running the hottest tub I can handle. The heating blanket has not helped. I cannot stand straight enough to attempt tai chi. Holding my breath, I lower myself into the filling tub and gasp as my tailbone makes gentle yet horrific contact with the hard tub bottom. I have not felt that particular pain since last winter, have not been so paralyzed by pain in so long that I’d forgotten the all-consuming nature of this beast. The water envelopes me. Drowsy in the intense heat, I slow my breath and close my eyes.

When I carefully raise myself out of the tub 40 minutes later, I can stand without wincing and wield my towel effectively. I hobble to my medicine cabinet and pour my morning meds into my palm, staring at the two tablets of Aleve. I need them. I know that now.

Just a month ago, I wondered about the necessity of two Aleve tablets twice a day–two times the recommended dosage but rheumatologist approved with prophylactic antacid meds. I even lowered the dose occasionally, if my pain seemed manageable.

But within six weeks of my move to Taper Town, I have become useless without it. Unable to function. Again.

That day, once the Aleve kicks in, I am able to attend my son’s parent-teacher conference and later watch my friends’ children so they can do the same. A second semi-scalding bath gets me through to supper time, nighttime meds–more Aleve–and bed.

For all my mental preparation for this prednisone taper, for all my bravado, my militant attitude, I am struggling. Even with Aleve, my days are governed by symptoms and the all-consuming management they require.

People talk about the heartbreak of loss, that jolt of recognition that comes only when something good is yanked away. These days I study the opposite: the shocking grief that accompanies the return of misery too great to remember accurately.

Six weeks in Taper Town and half a milligram have humbled me. I am alive, I am resolved, but I have put down my megaphone.

* * * * * *

Comments always welcome!

7 Comments on “Taper Town: Don’t Know What You’ve Lost ‘Til It’s Back

  1. I’m sorry you’re going through so much pain, but my goodness, what beautiful writing. When I’m in pain I can hardly string coherent sentences together. I’m seriously in awe of you right now.

    I hope you find some relief soon.


    • Thank you, Diana. I will admit I wrote this after a couple of days back on the Aleve and after many hot, hot baths. And you know how it goes: up and down. We shall persevere.


  2. This is how I feel as I tried to roll out of bed! I have gone another night with no sleep because of the pain even with taking my much need hot baths! I am in tears writing this mostly because I am relieved I am not the only one and at the same time so saddened that anyone else has to suffer like this!
    Respect, comfort and love sent your way!


    • Oh no, Jessica. You are not alone! Chronic pain shrinks our perception of our lives. When the pain is bad, that is all there is. When it eases up a bit, we spend time and energy managing it. And if it’s greatly reduced, we spend time worrying about its return. All of this leads to a shrunken, pain-centered perspective that isolates us further. One of the toughest jobs chronic pain sufferers have is fighting that shrinking perspective. Sharing our stories can be a useful tool in that fight, and I’m glad that this post has made you feel not so alone.

      How’s your support system? Are there people in your life who nurture you? Have you participated in any support groups (in person or online)? Shop around. Some lupus, autoimmune, or chronic pain communities are downers–everyone complaining and feeling hopeless together. I’d stay away from those–they will narrow, not expand, your perspective. Others, though, are supportive, positive, and remind participants that there is life (and love and happiness) despite lupus. If you’re on FB, you’ve got many to choose from. Just search for lupus or autoimmune communities or pages.

      Gentle hugs, headed your way.


  3. Pingback: Taper Town: Take Two | Beth Landau

  4. Pingback: Taper Town: The Blame Game | Beth Landau

  5. Pingback: Taper Town: Stuck Street | Beth Landau

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