The Great and Powerful IT

I’m having one of those days and IT sucks. IT’s dragging me down hard and fast. I can’t stop IT and, yes, IT could be worse. IT has been worse. I usually handle IT so much better but today? IT’s kicking my ass.

The great and powerful IT. Aloof and villainous. A thief, a cad, a coward that sneaks in through a crack in my defenses. Creeping, crawling, stalking until the music swells. I’ll resist as long as I can but soon IT will reach the peak and IT will come crashing down with a vengence. Then, IT becomes one of those days.

What is IT? Pain. That pesky bastard!

I’ve been dealing with chronic pain for most of my life. I’m at a place where, most days, I barely notice it. I feel it but I can push it aside and play pretend. I do have a high threshold, but I think I’ve become a bit desensitized. I begrudgingly accept that this is my life and body. I shrug it off and carry on because what choice do I have? I can’t cut off my legs and throw them in the garbage. Believe me, I’ve asked. Apparently, doctors don’t cut off limbs without a, “Good reason.” Silly doctors. 

In case you’re new, here are the Cliff Notes. I have kidney disease and a funny thing happens when one organ fails. It triggers a cascade failure throughout the body. First, my kidneys went and then: my heart doubled in size, lungs filled with fluid, I started having seizures, and I developed renal rickets.

In more clinical terms it’s called Renal Osteodystrophy. Kidneys clean out the waste in the body and help maintain a delicate ecosystem. That includes maintaining calcium and phosphorus levels. When the kidneys stop working they stop producing calcitriol, a type of vitamin D. This means the body can’t absorb calcium from food so it starts pulling it from the bones. Without calcium, the bones become brittle and deformities develop.

I was diagnosed with rickets when I was twelve. Every time I walked, micro-fractures formed deep in my bones. The joints in my ankles, knees, and hips were worn down. My legs started to turn outward and they looked like an upside-down V. I also developed a mild curvature of the spine.

The osteodystrophy cleared up after my transplants but it caused a lot of damage. Some of it was repairable. My legs were straightened with two operations, a couple of metal rods, two months in full leg casts, and six months of rehab. My legs look normal, but there’s still underlining damage that couldn’t be fixed.

Cue the great and powerful IT!

Most of the time, its a dull ache and some stiffness. It’s more of an inconvenience than a hindrance. It grumbles along until it quickly, and without warning, turns into a full-blown tantrum. The muscles in my thighs catch on the metal rods and tear. My legs burn and cramp. My knees and hips lock up and refuse to bend. I grit my teeth, try to keep moving, but the pain is beyond words.

I have a reserve of perseverance built up, and I try to save it for days like this. It’s nice to have little something extra to lean on when standing up straight is hard. My reserves help me square my shoulders, hold my head up high, and flip off the pain. I stubbornly defy it’s presence because I will not let this bastard stop me! I keep moving, keep living my life, and do my best to ignore the screaming ache.

Today, I can’t pretend it’s not there. Maybe it’s the cold weather. Maybe I’ve been pushing myself too hard. Maybe stubborn defiance isn’t the best choice. Whatever the reason, my reserve is empty and I’m feeling raw. The pain is getting to me, and I’m mentally exhausted.

On days like this, it’s hard to remember the positives. The good days feel so far away. There’s a hopelessness and an emptiness. All I can think about are the things I want to do but can’t. The pain won’t let me live my life. Not today. I’m beginning to wonder if it ever will. What if I’ve finally broken down for good?

Jealousy isn’t an attractive look, but I’d be lying if I didn’t say it was front and centre. I watch people go out and do things without thinking. They don’t worry about how they’ll get around or if they’ll get a chance to rest. They don’t feel like a burden because their mobility struggles slows the group. They can do what they want without fear, doubt, or hesitation. No matter what they ask it to do, their bodies will answer the call. Mine won’t. I’m so envious.

My reserves are depleted and with it comes the darkness. When I’m out with friends, I know they’ll look out for me. I know, rationally, that they don’t see me as a burden. They understand or, at least, they try to sympathize. Why would they invite me along if they didn’t? 

Pity.

No! It’s not true. I know it’s not true. In my heart, I know that they care. They don’t pity me but right now it’s hard to see beyond what I’m feeling and I’m pitying myself. It’s hard not to feel like a burden. It’s damn near impossible not to envy “normal” people. It’s tempting to call my doctors and ask them to cut off my legs.

Who thinks about chopping off their legs? Yeah, it’s messed up but that’s what pain does. It’s more than a physical state. It’s a mental assault. It attacks everything good, pure, decent, and sane. Rational thought takes a vacation and in its place the dreams start.

I think I’ve spent most of today lost in my head. Imagining a different life; a better life. One where I can climb the Swiss Alps or learn how to surf in Australia. (Oh Australia, you’re in my thoughts and prayers.) 

In that dream world, I can do everything my messed-up legs won’t let me do. That world is perfection. There’s no pain, jealousy, or pity. I want to live there forever, but it’s not real. It will never be real because every dream ends when reality calls.

This is just my life. It’s not perfect. It’s messy. It’s painful. But when this ache dissipates it will also be pretty damn good. I’ll take my dog for a walk in the rain. I’ll take my camera and get some cool shots. Maybe I’ll go out for dinner with a friend. I’ll begin replenishing my reserves. 

I will get back to living my life as long as I hold on. Hold on. Hold on. Hold on just a little bit longer.

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