More problems with (and lessons from) pain

Yeah, another long absence from blogland on my part.  My intentions were good.  I had topics ready to go.  There have been no problems with my computer.  And yet there I wasn’t.

The reason?  Because I was having trouble thinking straight enough to write.  And the reason for that was a serious bout of pain in my right leg.

I was diagnosed earlier this year with “chronic tendinosis.”  What that phrase means is that the tendons in my right ankle and lower leg can get stretched out of shape very easily and will hurt like nobody’s business, causing problems with activities like walking, standing, sitting and lying down.  What that phrase ALSO means is that a long battery of tests, my doctor can identify the symptoms (no duh, so can I!) and slap a label on them, but she doesn’t have a clue what causes it or how to cure it.  As diagnoses go, “chronic tendinosis” is about as helpful as what Warren Zevon was once told by his doctor.

So since just before Halloween (for which I had a blog post prepared, which now will have to wait until next year), I’ve been limping around in great pain, with my ankle swelled up to almost the size of my calf, often unable to relax the muscles or flex it in any direction because of the pain.  I had prescription Naproxen and Flexeril around from the last flare-up; the Naproxen had no effect, while I can’t tell if the Flexeril helped because it knocked me unconscious.  Finally I resorted to a steady diet of three ibuprofen every four hours plus occasional applications of Icy Hot, and things started improving.

As of today, you’ll be glad to know (well, I am!) that my ankle is at about 95% of its normal, or about 62% for most people’s ankles.  There’s a little tension in a couple spots, but I can do all the stuff I regularly do, like mop floors, climb stepladders and walk without looking like I’m preparing to be Igor in an upcoming Young Frankenstein reboot.  It’s not perfect, but I’ll take it – and I have a better idea for what to do next time this happens.

And while it was going on, I learned a few things:

I learned that pain’s collateral damage is distraction.  That bit I said about being unable to think straight enough to write?  Dead serious, not exaggerating for a moment.  Writing takes a lot of concentration for me, so I have to be in a place where there’s nothing pulling my attention away (door closed, no noises, et al.).  Pain, though, is designed to pull your attention away from other things.  God gave us a pain system so we’d know something is wrong and needs to be dealt with.  But when there’s nothing that can be done about it (or we don’t know what to do yet), there’s no way to turn off the alarms.  We’re not like Commander Data – we can’t just switch parts of ourselves off when it’s convenient.

Over the last two weeks, when the pain was bad, I’d sometimes be talking and have trouble finishing sentences.  A throb would hit, and I’d freeze mid-word – and occasionally had difficulty remembering where I’d left off.   Reading, I could do … most of the time.  Cooking, not too hard as long as I could sit down for most of it.  But typing and composing sentences in such a way that they could be understood?  Aw, heck no.  It wasn’t until yesterday that I was able to rattle out anything longer than a Facebook status.  It gave me some sympathy for people who deal with continuous, intractable pain – the mental wear and tear must be as bad as the physical.

Which leads into …

I learned that my wife is tougher than I thought.  Last week, there was a moment when I’d been sitting in bed for about ten minutes, trying (without success) to get my ankle muscles to unclench.  Nina (aka the Supermodel) came in to get something, and I described the pain to her – “like someone stuck a knife in below my ankle bone, yanked it halfway up my shin, then left the knife in there.”  (She was nice enough to wince sympathetically.)  Then I asked her, “when was the last time you felt something like that?”

She replied casually, with no change in expression, “earlier this week.”

Oh.

I knew that Nina’s Charcot-Marie-Tooth disease (CMT) made it hard for her to do a lot of physical stuff like long walks, heavy lifting and standing in one place.  I watch her put on her leg braces every morning, and grab her cane before going to work.  I urge her to sit down at every opportunity.  But for some reason, it never got through to me how much pain was involved.

Me, I’ve had two bouts of tendinosis this year, each lasting two or three weeks.  Bad enough.  But she has similar experiences, for a day here or an afternoon there, year-round – and has had them for over three decades, increasing in frequency as she gets older.  Think about what that must be like.  Think about how it would affect your work, your leisure, your sleep, your time with your kids, your sex life.  Think about living with that, and with the knowledge that there’s no cure and may not be one in your lifetime.  (For that matter, imagine that the biggest research center for finding a cure is at Penn State University.  No lie.)

Well, that’s Nina’s life.  And yet, she keeps on keeping on, working as many hours as her employer will deign to give her, taking care of her children, organizing a brand-new CMT support group (first meeting scheduled for December 17, if’n you’re interested), following her God and doing her level best to enjoy life.  I don’t always recognize how much she does or how hard it is for her to do it, and I often get too caught up in her imperfections.  (She has some – not as many as me, but some.)  But when I stop and think rationally about it … I tell you, she’s my hero.

I learned that maybe it’s stress (at least partly).  Over the last week, my hero and I have been talking about our various maladies, mostly the stuff that’s cropped up in the last two or three years.  And we both started wondering if many of them weren’t stress-related, and that perhaps that’s why our doctors haven’t been able to do much more than slap diagnoses on them and prescribe pills to blunt the symptoms.

There’s something to the theory.  The last time I worked outside the home was a three-week temp job, part of a usage survey for the local bus utility.  In the main dispatch office was a big poster about stress, along with a formula for calculating your “stress index” by adding up numbers corresponding with the stressful events you’d experienced in the previous year or so.  I tried it and found that my stress index number was 292; 300 or more was the highest stress level.

That was in June 2009.  Two months later, my son contracted Leigh’s disease, spent a month and a half in the hospital, and almost died.  Then my mom died, and I was the only one willing/able to take care of arrangements, sort out her possessions, square away her accounts, cancel her subscriptions and deal with certain relatives who wanted to demand stuff (but didn’t want to help).  Then my wife’s employer decided they could get away with shorting or forgetting people’s paychecks; meanwhile, I couldn’t work because I was dealing with my son’s illness and my mom’s estate.  Since then, Nina has been scrabbling for work, I’m still too obligated otherwise to take a job, Sean’s recovery has proceeded – but slowly, with a lot of intensive care on our part – and the economy has remained in the toilet, negating all that hope and change we were promised three years ago (and didn’t quite buy even then, but still).

So could all this be affecting my physical health?  Yeah, I think it’s a possibility.  Nina and I are now discussing looking into massage therapy or maybe chiropractic care to see if they might be of assistance.  She’s got a doctor’s appointment Monday and plans to ask about potential referrals; I may have to drop in and see mine as well.

But in the meantime, I can walk again in a more or less normal manner, and I’m thankful to God for that.  That, and the ability to get back to writing again.

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One Response to More problems with (and lessons from) pain

  1. Lori Knutson says:

    Ray,

    I read your post with great interest since anything medical grabs my attention, being in nursing school and all. I have you and Nina up on a pedestal because of how you handle so much. Just know that someone out there thinks a lot of both of you, and I keep you in my thoughts and prayers.

    Noticed you mentioned possible massage therapy – I HIGHLY recommend this!!! I am a licensed massage therapist (did that for two years several years ago), and I can’t stress to you enough how beneficial regular massage is. They are amazing, but most people can’t afford regular massages.

    There are a lot of different kinds of massages; I only did typical Swedish relaxation as that was the only kind my school taught. However, even that done regularly helps a lot. I don’t think you have to go to some high-priced, fancy guru to get good results.

    Good luck, and I hope your pain goes away.

    Lori

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