Much of the first 6 months following my fracture and diagnosis are a blur. At times, I feel like I was and still am sitting watching the frames of a movie. I think a small subconscious part of me knew early on (before the official diagnosis) that something was wrong with my body’s “pain system.” I had been reassured by my doctor that my pain level should be considered “normal” and not to be concerned. However, quoting Huck on the TV show Scandal, “Pain is the only human process that is completely defined by the person experiencing it.” How could this doctor know how I felt? I never had worn a cast or had the experience of having it cut off. How was I supposed to know that the severe pain I felt when they cut the cast off every 5-6 days was abnormal. The office staff thought I was being over dramatic with a low pain tolerance. This misinterpretation could not have been further from the truth! The amount of medication I needed to comfortably make the car ride to my doctor appointment in addition to walking to the office location included multiple heavy narcotics, anti-nausea, anti-anxiety mediation and Advil. This medication cocktail enabled me to be chauffeured to the doctor, see the doctor, and return straight home without becoming sick with the pain I could still feel.
Memories from that first 6 months replay in my mind so vividly that they bring me to tears. The look I saw in my parents eyes continues to haunt me as they tried to help me recover. I felt their frustration at seeing me unable to cope with the pain; they were helpless and unsure of how to comfort me. The fact that I had no idea why I was still in pain lead to my own feelings of helplessness. Any parent can relate! It does not matter if your baby is 2 months old, 10 years old, 30 years old or 50 years old; parents are hardwired to protect their children and fix their problems. By definition the word frustrate means the act of making worthless; to defeat or nullify; to prevent from accomplishing a purpose: Therefore, frustration accurately describes everything we felt. My pain and inability to cope frustrated all of us. We entered into a vicious cycle where I needed someone to support me both emotionally and physically but my parents were frustrated and needed a break from me. I perceived their displayed frustration as my fault. I felt my pain ultimately hurt them which lead to my feelings of guilt.Memories from that first 6 months replay in my mind so vividly that they bring me to tears. The look I saw in my parents eyes continues to haunt me as they tried to help me recover. I felt their frustration at seeing me unable to cope with the pain; they were helpless and unsure of how to comfort me. The fact that I had no idea why I was still in pain lead to my own feelings of helplessness. Any parent can relate! It does not matter if your baby is 2 months old, 10 years old, 30 years old or 50 years old; parents are hardwired to protect their children and fix their problems. By definition the word frustrate means the act of making worthless; to defeat or nullify; to prevent from accomplishing a purpose: Therefore, frustration accurately describes everything we felt. My pain and inability to cope frustrated all of us. We entered into a vicious cycle where I needed someone to support me both emotionally and physically but my parents were frustrated and needed a break from me. I perceived their displayed frustration as my fault. I felt my pain ultimately hurt them which lead to my feelings of guilt.
Shortly after my diagnosis my mother and I sat in the doctor’s office struggling to understand this monster [RSD] and asking the doctor about the pain. It was explained to us that despite the physical healing of the broken bone, the nerves were still sending and receiving signals saying “ouch, I am injured.” My mother’s response to that fact lead her to conclude that since there was no longer an injury the pain should not exist therefore it would be best to ignore it and push through it until it quit hurting. I found it unbelievable that my mother suggested that I push through this pain thus ignoring my body’s warning system. I remember becoming flustered (I am not sure if it showed outwardly) and started to block out the conversation. The doctor quickly pulled me back to reality when he stated that this pain is VERY REAL! It hurts like any other “real” pain. The body is malfunctioning and creating pain signals without a correlating injury. The messages sent by the nerves cause the body to respond with pain, decreased circulation, color changes, bone thinning, muscle loss, changes to hair and nail growth and changes to skin. In essence my nervous system could be compared to a light switch. With an injury the light switch turns on and the body says ouch. When the injury heals a normal body turns the light switch off making it ready to alert the body to the next injury. After my injury healed my light switch malfunctioned and became stuck in the on position, constantly firing “ouch” signals that the body continues to respond to. The doctor went on to explain that you cannot ignore the pain or push through it, the saying “no pain, no gain” no longer applies to you. I can’t speak for my mom, but after that conversation, her demeanor changed. I am not sure exactly what he said that hit home for her but I felt like he was validating the fact that my pain was real and it now had a diagnosis. I did not need convincing that my pain was real!
Most importantly, the last thing I want to leave the readers with is my doctor’s insistence on maintaining and improving my activity level. I was told that I may never walk like I did before the broken leg. He stressed the importance of the phenomena “if you don’t use it, you lose it.” Your muscles and range of motion needs activity to be maintained otherwise you will lose the muscle mass and flexibility necessary to support an operating limb. He also explained that once you lose any of the aforementioned, it takes 10 times the work and discomfort to regain it again. The doctor further stressed the need to listen to my body. I needed to expect some discomfort with rehabilitation therefore I needed to envision a brick wall. That brick wall would vary with daily stressors and represented my limit for activity that day. I needed to learn to gage how close the wall was and push my activity level to get close to touching that wall without crashing into it. Each time I got close and touched the wall without going through it, I made progress in my rehabilitation. I came to find that if I miscalculated and crashed through the wall I would essentially undo days of progress I had already made. To prevent this from happening the doctor told me it was imperative that I learn to tell the difference between RSD pain and rehabilitation pain. When I felt the RSD pain, I was to stop! Sometimes I would knock down that brick wall without realizing it, my only indication showing hours after surpassing my limits. My indication became a lack of or interrupted sleep due to pain. These episodes have the potential to last for days. It is important to state that during these episodes “Backing off” does not mean complete inactivity it merely means that you allow additional rest time for your body to recover while doing some kind of activity. For me this meant that I shifted from pool exercises to just writing the alphabet in the air with my foot and allowing nap time. My first attempt at exercise and movement began with 3 steps. My wall had been breached. My second attempt came days later with my mom persuading me to get into the pool. I started in neck deep water just moving my foot underwater. I was able to tolerate the pool therapy and progressed from no weight bearing movement in the pool, just moving the leg, to walking in the shallow end. My time spent in the pool went from 15 min a day to 45min a day, what an improvement. I learned how to get in the pool with minimal help and eventually was able to forgo my crutches for short “walks” inside the house from the couch to the dinner table. There were many times I broke that wall into pieces, many sleepless nights and increased pain. Despite the trials, my crutches rest in a corner. If I need them one day, they are on stand by! I don’t anticipate ever picking them back up, but I still have my days when, “oops, I over did it and need to take it easy today.”
Some people may need a different more delicate visualization than my “brick wall.” You may want to picture yourself inside a beautifully colored bubble much like the one Glinda, the good witch from Oz travels in. Just like the wall this protective bubble is not indestructible. If you are too aggressive with your physical therapy, you will pop your bubble! When this happens, it will take time to regenerate it as you recover from your over exertion. No matter which way you visualize your limits, it is important to recognize that with RSD we must listen to our body and challenge it in order to survive! The less we challenge our limits, the more function we will lose. Don’t give up! Don’t settle! Pick an activity that is important to you and push your way to your limit. If you exceed that limit you will know that at least the pain was not in vain because you enjoyed the activity. In the event that you do end up with pain and an “oops, I did too much,” at least you accomplished something that you enjoyed.