Do You Maintain or Reduce Your Meds?

I'm not even sure why I do this, but I am continually trying to reduce my pain medication.

I stabilize for a period of time, and then I try to taper.  I drop a few pills and then I begin to feel tiny ripples of pain - I call them guppy ripples.  At that point either I pay attention to them and go back up to the last medication level at which I was stable; or I pretend they are indigestion, try to ignore them for a week or so.  Too often the guppies then turn into barracudas, and I have to increase the med dosage beyond where it was when I began to taper.  Sometimes, though, I can successfully taper, and this then justifies my next attempts to cut down on meds.

Richard has learned that his voice needs to be a quiet one during these medication experiments.  He reminds me of my doctor's perpetual advice to of just stay stable at the level of meds I'm on.  At some point I ignore his counsel and do my thing.  If (or when) I suffer the consequences, he just holds me and reminds me that I had stabiity and can have it again.

If you're the ill partner, how do you manage your medication?  And if you're the well partner what role, if any, do you play around medication matters?

Do You Play Around With Your Medications?

I have such an ambivalent relationship with my meds. They are my hero and my accuser.

They accuse me of still living with a chronic pain condition. Their little pink and yellow and sometimes blue fingers point at me and say, "You thought you escaped, that pain would be no more. But pain is just underneath the surface of the numbness we provide. Mess with us and you invite pain to step up."

And my meds are my hero. They protect me from my true nemesis -- pain. They are always there for me. And when I let them, they do their job, ceaselessly, heroically.

So why do I keep messing with them. I continually try to get them down to the next lower level, and then the next lower level. I cut them into halves and quarters. Then I scrape off molecules from the quarters until there's only a few nano-particles are left. The more I can pare away from my meds, the more healed I feel I am.

Not true. Maybe in some alternate universe, but not in ours. I always drop down a teeny bit too low and smack up against a relapse. And the relapse isn't reparable simply by going back up on meds by one step. The relapse soon becomes a cascade of pain that requires that I go way back up to the top of the medication mountain.

So I climb back up, take the highest level of meds, and am grateful that they work to take away the pain. But I carry my pick-ax with me. On the ready to chip away at the med mountain as soon as I stabilize.

Meanwhile, Richard is calling out words of encouragement to me to. "Don't worry, you'll get better."

Do you play these games with your medications? What are your reasons?

Relapse & Rebound

Well...I had to go way up on my meds. This recent pain relapse wasn't going to disappear with each out-breath of meditation or by visioning a river of healing blue water flowing through my body. I haven't been at this level of meds since I first developed my pain syndrome. Even though I feel grateful and lucky that the meds do work for me - I have to say, in all honesty, each step up, each time I spilled one more pill onto the pile, I felt a sense of defeat. I really don't want to be a person who is dependent on pills.

Richard is happy to have me back as a whole person rather than the whipped and broken puddle of a person I am when the pain takes over. He is glad for the gift of medication. I pinball from glad to mad to sad, and eventually let the medication ball drop into the gutter and get on with daily activities.

There is, I admit, a unique joy I feel when the pain recedes but is still close in memory; and the charm of daily routines is not yet faded by complacency and habit. In these moments I can feel delight in the mundane, and I can lean into that "glad to be alive" sense that only comes from having survived something terrible.

So I pour the pills onto my open hand, count each one, notice its size and color, toss them into my mouth, and send them on their journey with a big gulp of water and a sense of gratitude,... and resentment.

The Pill Game

Damn. Damn. Damn.

I had tapered down to a twice daily dose of smaller amounts of meds and was doing just fine. The kind of fine where I could start to take things for granted again. Things like looking at my watch to see if it's time to take afternoon meds. Like going out into the world without bringing a water bottle so that I would have something to help wash down my meds. Like eating spicy food and tomato sauce, and other trigger foods. Like paying attention to the explosion of wildflowers instead of signals of impending pain bursts.

Then the ripples began. Little spikey fish swimming around my insides. Then glass shards. Then water balloons filled to bursting. Nothing can be taken for granted in this state.

I tell Richard what's going on. Not that I need to. He can see the signs for himself. They're not subtle. I disappear, leaving a trail of pain crumbs for him to follow.

So I follow the instructions I have been given dozens of times. Don't play around with meds. Don't try to take one more blue pill for a few days and then stop to see if it worked. Then add the yellow pill and sprinkle a couple of brown ones here and there, for extra conrol, and color contrast. Then stop, start, stop, start. Don't do any of that.

Go back up to the pill regimen under which I last had the best pain control. And stay there. For at least a month, maybe longer.

So this time I remember the advice. I follow instructions. The pain recedes. I am filled with gratitude and resentment.

That's the way it goes.

When Pain Goes Away

For the past three days, Richard has had a smirk on his face. In general, he is a gentle soul, compassionate beyond the point where most people would be showing impatience, usually able to leap over fear and ego in a single bound. He does show moderate smugness -- especially when he is proven right about the time it takes to get to the airport during rush hour. But he rarely smirks.

This current smirk, is a combination of "I told you so" and "I am happy for you, and us." It's a smirk that follows the ending of a pain episode.

He knew, based on many similar episodes of past pain experiences, that getting to the right medication titration would eliminate the pain. I only knew the anxiety of all the untested "what ifs." What if this time is different? What if something else is wrong? What if it takes months or years, again? What if I can't work or write? What if we run out of rice cakes and almond butter (funnily the only thing I can eat when I have pain)?

He goes to Whole Foods and comes back with shopping bags overflowing with rice cakes and almond butter and reminds me, again, that this pain will stop. And it does.

The smirk of love.

Making Pain Go Away

Here's a word I never used in the before time -- titration. I knew its meaning, but it had no function in my pre-illness life. I didn't titrate how many eggs to put in a cheese omlette or how many gallons of gas I needed to make the drive from San Francisco to Mt. View. I just broke eggs and filled the tank.

For the past three weeks my attention has been riveted on titration. Determining how much to go up on which meds at what time intervals to get my pain back in control has been my mission. In the ole days, my mission might have included helping others. But pain makes its own decisions, and I become its loyal soldier. I follow where it leads, head down, tail tucked.

So I make an adjustment to the medication regimen and like a hawk scanning for prey, I scrutinize the meridians of my body for any evidence that this new combination of meds is reducing the ripples of pain. The outside world ceases to exist.

My pain specialist does guide me. But she also reminds me that pain is individual, and I just have to keep titrating until the cocktail works.

There's that word again. Titration. It has come to have a mythic quality about it.

I just want a recipe.

Richard, my voice of reason, reminds me that I will keep trying and I will get better - in a few days, maybe weeks - but not years, not like before. I try to hear him, but often I just can't. Pain is louder.

But I keep titrating. Two pills twice a day. Then three pills two times a day. Scan for a reduction in pain blips. No. OK then. Three pills three times a day. That's my limit. Not because I get impaired by side effects. Luckliy, I have none. But more meds than that and I cross some arbitrary line that exists only in my mind. The too-many-pills line.

Pain and I eventually come to an agreement. This level of medication for my life back.

I take the deal. Gratefully