“Fake it till you make it” is what my good friend Lauren likes to say. She’s a fellow gimp; a sufferer of chronic pain. Every single person has experienced pain at some point in their life. For most people pain is temporary. It’s something that goes away with they get better or their circumstances change. Then, there are people like me and Lauren, who suffer from chronic pain that by definition either persists for a long time or constantly recurs. A better definition is pain that never goes away and has no end in sight. I have had pain; to some degree for the last five years. I had a nine month reprieve when I was pregnant with Antonio. The pain subsided and went into hiding but came back with a vengeance when he was born.
I was eight years old when they diagnosed me with scoliosis. Scoliosis that was so severe they thought I had bone cancer or something. I thought it was pretty crazy at the time. How could there be something wrong with me? I didn’t hurt. I didn’t feel sick. Six months later I started wearing a hard shell back brace; my personal torture chamber. If I hadn’t hurt before I did now. They said it was going to fix me but all I knew was I went from not hurting to hurting for eighteen hours a day and wanting to do nothing but cry. I had to learn how to function in pain and how to push past it. (This was good training for the future) I wore the brace for three years. Imagine my relief when they said I was done and never had to wear the brace again. If my parents would have let me I would have burned the thing. (I believe it is somewhere in their attic; so maybe one day I’ll get to!)
Similar to the brace I wore
At 11 years old I thought I was done with scoliosis- done with the pain. Up until high school that was true. In high school I started to have flare-ups. They were almost always in times of high stress. I would end up in horrible pain for several weeks and then it would subside. I had to have special accommodations at my job because I couldn’t stand for 4 or more hours without ending up in pain. I had to quit a job because they couldn’t accommodate my need to be able to sit down.
However, for the most part I still lived a normal life. I was able to go hiking, play sports, go dancing (badly), wear high heels and do things quickly. I had no clue the sort of limitations chronic pain could put on you. When Mark and I were engaged I saw a back doctor and did a bout of physical therapy because of a bad flare-up. This doctor told me I wouldn’t need a spinal fusion till I was an old lady. I thought I had decades. Fast forward five and a half years later Mark and I were sitting in a different doctor’s office and he was confirming what we already knew. I needed a spinal fusion and I needed it as soon as possible. We saw him in April and I had surgery June 6.
My scoliosis had progressed at an alarming rate in the previous five and half years something that was highly unusually. When someone with scoliosis reaches skeleton maturity (around eighteen.) their curves stabilize. If they do worsen it is by half to one degree a year. My curves changed between twenty to forty degrees each. At the rate they were progressing I was going to start having issues with my internal organs in the next few years. My surgeon ended up fusing from T-3 all the way down to L-4. Basically half my spine.
The black box shows the portion of my spine that was fused.
The pain right after surgery was the worse pain I have ever experienced. Those first few days I was sure that I was going to die because of the pain. Given the amount of pain drugs I was on I shudder to think of what that pain would have felt like without medication. When I woke up in the ICU my pain level was so high I remember begging for pain medicine despite the fact that I was on a morphine pump. Mark says I pushed the button constantly and kept saying the stupid thing wasn’t working. I didn’t even know who Mark was. I just knew that he was important. My lifeline holding me together. The first several months after the surgery are a pain filled haze. There are large holes in my memory.
We had hoped that a side effect of the surgery was going to be no more or at least significantly less pain after I got through the recovery. Pain relief wasn’t the reason we did the surgery; stabilizing the spine and preventing damage to my internal organs was. But we were hopefully it would greatly help with my pain. Originally, we thought it had been successful. Six months out of surgery I still had some pain but it was way less. As long as I didn’t overdo it. The only part that was still extremely painful was my left shoulder blade area but it wasn’t all the time. It was occasional and I wasn’t going to complain.
July 2013 Mark was deployed and I was preparing to move the children and myself to a new rental house. During that process I started to have pretty severe pain in my right hip/lower back area. At first I thought I had just over done it. However, even with rest and doing every trick I knew to help with muscle strain nothing helped. The pain just got worse. Pretty soon it was radiating into my butt, upper leg and lower back. I started to have trouble walking and started to hear a popping sound. Off to see the back doctor I went. He diagnosed it as dysfunctional si-joint. Also, by this time my shoulder had gone from an occasional pain to an all the time pain.
I have accepted that pain problems will always be part of my life. I’ve been blessed that we have good health insurance and I have good doctors who work with me to try and manage my pain. But managing my pain doesn’t make it go away. It is simply a band-aid fix. We simple put a bandage on the pain to lessen it. When that bandage falls off my pain returns full force. I hurt every single day. Odds are I am not going to tell you that. I am not going to acknowledge it even if you ask. I am probably not going to tell you that I hurt or I will play it down. When I tell you I am fine when you inquire as to why I am limping it isn’t because I think you don’t care. It isn’t because I am a masochist. It’s because talking won’t change it. Telling you about it won’t change that I hurt and most people don’t get it. I’ve had people tell me it’s all in my head. I’ve had people tell me if I just tried harder to think positive I’d feel better. I’ve had people tell me I give my pain to much power.
I don’t talk about it because it’s hard to explain to someone; who hasn’t experienced chronic pain what it’s like. It’s hard to explain how chronic pain affects every single aspect of your life and the lives of those closest to you. I can no longer go hiking. Some days even walking the couple hundred yards to our mailbox is more than I can do. My children ask, “Mommy are you hurting to badly to do this today?” “Mommy, can I sit on your lap or are you hurting to badly?” My six and four year old shouldn’t have to ask that. They shouldn’t have to understand that sort of physical pain. However, it’s their reality no matter how much I wish it wasn’t. I can no longer do days of activities because it wears me out and leaves me hurting. For example this past weekend when we went to Laura Ingalls Wilder’s house. I had to spend the next day taking pain pills and sitting in the recliner with the heating pad to recover. Next week we are going to the zoo with the homeschool group. I have already cleared the next day of our schedule because I know that I am going to be out of commission.
People wonder why I would want to live in an RV with my family. Part of the reason is because I would be able to take care of the space. I would be able to keep on top of cleaning an RV. I am physically unable to keep our almost 2000sqf home clean even with Mark helping me. Something that takes a normal person five minutes takes me ten to fifteen minutes. That’s on a good day. On a bad day it can take me twenty or more minutes. Mopping just the dining room makes my shoulder/neck hurt so badly I have to take a thirty minute rest period. Vacuuming the main carpeted areas puts me out for at least a hour and a half. One a bad day I am incapable of doing either of those things. On a bad day I can barely manage to make meals for us.
The other night I got up to use the restroom and my hip gave out on me. It caused me to fall. Since, Mark was at work I had to drag myself across the floor to our bed and then use the bed and night stand to hoist myself back into bed. Come morning I was unable to get myself out of bed. Mark had to help me. This is the reality I live in. I have to measure everything in terms of if I do x I won’t be able to do y and z. I need to not do x so that later I can do y. My new pain management doctor told me he didn’t know how I was functioning. I told him because I had no other choice but to. My kids deserve a normal mommy- a mommy who can play with them and take them to do things. My husband deserves a normal wife- who doesn’t hurt all the time. So, I’ll fake it till I make it. I will keep putting band-aids on my pain. I’ll wear a smile on my face and pretend I don’t hurt.