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Inside the Mind of a Teenager With Chronic Pain

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8 a.m.: I’m awake. Try not to move; if you move, your pain will start acting up. Dang it! I moved. Time to start the day, I guess.

8:30 a.m.: After the first few steps out of my bed, my knees feel as if they have been crushed. But I must make it downstairs to take my medicine. I am now on the fourth step, and the pain in my ankles and knees has increased. There isn’t much I can do besides holding onto the railing to try to decrease the pressure.

9 a.m.: Now that I have lifted up this glass of water to swallow my medicine, my shoulder pain has started. They hurt, they are stiff, they keep locking up. Wow, that glass of water was heavy, and now my wrist hurts. Why did I drink a glass of water?

10 a.m.: I am lying down now, because the slightest movement will increase my pain. Ugh, my back has started to hurt and now I can’t lie down. I can’t sit up either because my neck feels so painful and heavy. There is no winning here. I’ll try to sleep.

2 p.m.: My little brother wants me to take him to the park. I have put on my knee and ankle braces, but I can do this.

2:05 p.m.: I am regretting this decision. My shoulders keep locking up, my knees are hurting me, my neck is hurting me, my ankles are hurting me, my back is hurting me. Everything is hurting me. But he is my brother; I have to push through for him.

Self portrait of the author
Photo by the author (www.ethelnalule.com)

3 p.m.: I’m back at home and in a lot more pain. My skin has also started to feel like it’s on fire. That’s my nerve pain acting up. My knuckles are stiff, and I have two new muscle knots. I guess I’ll get my TENS unit out, or maybe I’ll get my tennis ball out first so I can roll my knots on it. Afterwards I might get my heating pad out and put on some pain patches.

I don’t take pain killers because they do not work for me. I have been on most that are suitable for my age, both over-the-counter and prescription. The medicine I take is to kill the infections.

5 p.m.: Wishing I could go for a run. I used to run every day. I want to pick up my camera and take pictures, but the weight hurts my wrists and shoulders. I’ll just take an epsom salt bath instead, and then watch some movies. But first, I will post a photo on Instagram so all my friends think I’m doing well. Smile. Post selfie. Fifty-six likes.

9 p.m.: I make it up the stairs and get into my bed. I wonder how this could be. I have never injured nor sprained a single body part. It’s been four years. At first I only had pain in my right knee, and now I have pain everywhere. My knees, ankles, wrists, shoulders, neck, back, arms and legs. They all hurt, constantly, every single second of each day. I was not in a car accident or playing a dangerous sport. I was bitten by a tiny little bug that is a lot smaller than a lady bug. I was bitten by a tick, possibly four years ago. I was left untreated and undiagnosed for years, so the infection spread to my joints, my muscles and my central nervous system.

My muscles are always so tight, when I get acupuncture they have push the needles in with force. Massages increase my pain. Nothing really helps.

I close my eyes and go to bed.

Tomorrow I will repeat this day all over again. If I have to fake a smile, I will. Maybe I will post another selfie on Instagram so I can seem “normal.”

Oh wait, I can’t sleep, I’m in too much pain. I will take sleeping pills to try to sleep.

It’s been another year, another day and another second in pain. Maybe my pain will lower down tomorrow to a 7/10.

I cry and I hope.

10 p.m.: Goodnight.

Originally published: August 20, 2016
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