Words by Julie - Living Life With Paralysis

How would you rate your pain? 1

“On a scale of 1 to 10 how would you rate your pain?” Have you ever been asked this question before? I can not count the number of times I have been asked this question is the last 16 months. And who can answer it accurately anyway? Is that even possible? It depends; are you in childbirth which, we all know, comes to an end? Or are we facing something that we have never faced before and will likely never see the end of? Are you tough or are you a wimp? What has been your life experience? How healthcare providers can gather any accurate information from this question is beyond me. Not all pain was created or can be treated equally. This last part is what I am still learning. What is this pain from? Is this crap I have another infection pain or is it from a balls to the walls workout?

For months now I have been wanting to get off of the painkilling narcotics that I have been on. These drugs with their magical nerve blocking effects, as you likely know, have their downfalls. For starters these are the drugs that have the “do not operate heavy machinery” red labels because of the foggy haze that they cause in your brain. Then, of course, they constipate which, when you already have a neurogenic bowel disorder, causes additional problems. I feel like they are rotting my teeth because of the dry mouth that I wake with every morning.

Before I left Parkwood I asked how long I would have pain. The doctor said likely for one year. So as that one year mark came and went I kept looking for a sign; something that would tell me it was time that I no longer needed to keep taking those pills for pain. Instead of a sign, along would happen another UTI, and another and another. With each infection the pain comes back, and, as they say, with a vengeance. For whatever reason that is how my body responds to bacteria in my urinary tract – crank up the neuropathic pain. Alas I never did get my sign, just decided it was time to try and remove it from my system.

So I did. I first cut the dose in half; instead of twice a day, just once. Then a week ago, no more. The first thing I noticed was the lack of “hazy brain” that I would often feel in the morning and had been blaming on low blood pressure. Well, it turns out, that was the drugs. I had expected to feel an immediate increase in muscular pain in my back, but that has not happened. What has happened was not expected, and that is the spasticity that I wrote about earlier. It was there all along, but was being blocked by the narcotics.

Today, as I deal with another evening of pain that gives me the chills and causes me to just want to be held, I wonder if it’s worth it. Here I have weaned myself off what was 6mg/day to end up having taken 2mg just to get to bedtime. Now this is a Friday, a day after a particularly grueling robotics day, so not every day ends like this. These pills take the chills away, but not that nasty nerve pain, the one that feels like my bra band is on fire.

I don’t write about this in order to gain sympathy; my goal is only to inform. In my former life I used to get up at 5:30 to get to the gym or pool and workout to the point of pain or almost vomiting. When Oliver was born he came so fast there was no time for drugs. I can take it. But this is different. Tonight for example, I laid in my la-z-boy and had Oliver balance the Connect Four board on my lap. This way I could spend time with him, we could play, and I would not have to move.

I have developed a healthy respect for those who suffer from chronic pain. I knew nothing about it before and now, here I am, a part of that club.

I hope you never have to join.

One comment

  • Ernest Dow says:

    Thank you for sharing, Julie (else we would not have an awareness). I know an amputee who has to deal with constant "phantom pain" – must be excruciating. Don't envy either of you. Grace and mercy be yours. Glad you can still rise above it to enjoy time with others, rather than succumb to the black hole of self-pity (no matter how justified).

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