how much, how little

Two days ago, my pain hit the highest spike since before the surgery.  It was no better yesterday, and because of it, for the first time since the surgery, I had to change my plans so I could go home and rest.

Today, for the moment, things seem to be quiet.  But the last two days started quietly, too, and then as soon as I began to try to do things, it all fell apart.  How much pain was I in then? How much am I in now? What difference does it make?  It’s not like anything works to alleviate it once it’s up and running.  And recalcitrant pain has been so much a part of my life for so long that the actual pain levels themselves are pretty well useless.  What I need is a functionality scale. Am I able to do things like run errands, go to class, and shadow researchers in the lab; yes or no? That’s all I care about. “Yes” means the pain is OK. “No” means…

…it means nothing good. It means I can’t use the sling, because it hurts the good shoulder too much. It means I have trouble driving and parking. Most important, it means I can’t carry anything. Try to get through your day without lifting or carrying a single thing that weighs more than a pound and let me know how that works out for you.  These past two days, it’s been excruciating to handle even the smallest, lightest things for more than a handful of minutes.  Everything makes one or both shoulders worse – the purse, the tote, the wheeled backpack, a book, a coffee mug – all of it.

And if I can’t carry anything, then I can’t run errands, can’t manage even the simplest housekeeping tasks, can’t bring the necessary materials to class, and can’t walk around taking notes in the lab.  My back was so stiff Tuesday I could barely bend over a microscope.  Yesterday, I had to ask a classmate to staple a report for me because I couldn’t put enough pressure on the stapler do it myself – not even with both hands.  And the more I get shut down like this, and the longer the episodes last, the harder it is to maintain the faith that my body will ever get to a place where it isn’t such a tender, broken mess.

The last two nights, the pain was so bad that I had to double up on muscle relaxants and add pain medication back in before I could get to sleep. Today, I’m staying home and resting for the better part of the morning instead of going to the lab on campus like I normally would, in hopes I will be in little enough pain to handle an exam this afternoon. The whole day is going to be challenging, but even the emotional alarms that usually go off upon that realization are muted. I’m numb. I’m starting to give up.

Earlier this week, my physical therapist diagnosed not just cramped and tight muscles (this is in the “good” shoulder, by the way), but an entire locked shoulder girdle. “Wear a tank top next time,” she advised, “because we’re going to have to do some ultrasound to loosen that up.”

Of course we are.

“Now that the inflammation is down, can I go back to doing my strength and ROM (range-of-motion) exercises?” I asked (that would be in reference to the “bad” shoulder).

“No. Give it one more week.”

And it’s a good thing she said that, because my condition deteriorated from there.  Yesterday was agony.  I saw her again this morning, and I could still barely handle being touched, on either side.  We did some gentle ultrasound and some ice, but that was all.  And she looked worried.  And she never looks worried.

Between that, the pain, the stress, and the fact that it’s sapping my sleep as well as my energy, I’m too tired to stay standing for long periods while doing my work. But sitting makes both of my shoulders hurt even more, leading to the situation I was in last night and the night before, where the pain was so bad I could not sleep.

I need to factor demoralization into my scale, too. I’m not just physically tired; I’m spiritually and emotionally exhausted. This protracted game of shoulder whack-a-mole is wearing me down. Good one gets better, bad one gets worse, then vice versa, back and forth, again and again.  I suppose it was inevitable that I’d hit the jackpot eventually, and now I have; this week, both of them are quite bad.

The knot under the left shoulder never completely goes away, and won’t, I’ve been told, until the right one gets strong enough to start pulling its weight (literally). But there’s a rock under the right one now, too, and it’s been three months since the surgery, and it’s still all I can do to bend my right arm at the elbow and push a child’s rubber ball a couple of millimeters into a wall for three seconds. This does not fill me with confidence as to my recovery progression, to say the least.

And the fatigue – I can’t stay ahead of it. I’ve learned now that even if I feel good, I can’t allow myself to pick up the pace even a small bit or I’ll derail. And as a result, I managed to maintain pretty well despite over a week of less-than-ideal of sleep. But even suppressing my day-packing tendencies can’t make up for continuous incremental loss, and now I’m a wreck. I need to build up my physical stamina, but every time I add a workout, even a brief one at a very low intensity, it turns into a major setback.  It’s gotten to where I’m reluctant to engage in any extra activity at all.

I don’t know what to do. I’m losing hope that I will ever be well. I had been so sure that the surgery “fixed” me, but it did no such thing. All it did was halt the injury progression of my right shoulder and remove the offending tissues. That made it possible for the shoulder to be fixed. But it’s still in terrible shape, and although I had deluded myself into believing otherwise, getting it back to normal is not a foregone conclusion.  On the contrary; it now appears unlikely. Worse, the rest of my body, and the ordeal it went through for all of those months, doesn’t seem amenable to fixing, either.

I need to talk to someone about this, but who? I have a follow-up with the pain management doctor, but the lion’s share of his clients are in chronic pain forever. What’s the trajectory for those who were immobilized by pain for a lengthy period of time, but then had the cause of that pain removed? How long does it take to get the body back to the state of health it was before? Months? Years? Never?

I want someone to tell me what I should be expected to do. Not what “most” people do. Not what “average” is. I am not most people and I am not average. I break easily and heal slowly. I want to know what my specific progression will be, my body, my shoulder[s]. Because I just can’t seem to get out of first gear. I’m doing so close to nothing that it’s impossible to reduce my activities any lower, because then I’d actually be at nothing.  And it seems every time I try to do something, no matter how small, I make myself worse instead of better.

I don’t know my pain level, but my demoralization level is very high, and my functionality level is very low. And I can’t take muscle relaxants for that.

About C. M. Condo

I am a late-diagnosed, high-functioning autistic living with chronic pain. I started this blog in March of 2014 as a way to try to process what was happening to me. It is my hope that by sharing it with you, we can both gain something, or at least learn something, from my experience.
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1 Response to how much, how little

  1. christellsit says:

    My god, what is going on here? I am baffled as to how this slide into deeper hell happened. I was going to advise, dangerous, I know, that you somehow make the sling your friend. But I see that your left shoulder will not allow that. So the deal is nothing works. Can’t stand, can’t sit, and beyond depleted from lack of sleep. Okay, let’s say the exhaustion is making the standing “exhausting.” Well, the solution is more sleep. But how do you get that? Let’s say you do nothing at all. Oh, wait, you need to eat, shower, get dressed, etc., – talking the bare bones here. Okay super surgeon and pain manager … put your heads together and fast. Well, you have been standing around in the lab and you did do Palestrina this weekend. Guess that was too much but shouldn’t it be well within your capabilities so long past surgery? Wish I could help – no, fix it all.
    Gentle hug and prayers, My Sweet Girl. I love you.


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