Staying Positive in My Life With Cerebral Palsy and Chronic Pain

It’s the early morning. The sun greets you as it rises with an extremely bright personality, welcoming the morning with open arms.  You open your tired eyes, which now look like tiny slits due to lack of sleep. You quickly cover your eyes to shield them from the incoming sun. It’s not that you don’t like and aren’t grateful for the mornings; it’s that the burning pain in your patella has terrorized you all night and kept you awake squirming in misery.

No matter what you do, you can’t get comfortable. This brings new meaning to the phrase tossing and turning. You can’t sleep on your stomach because your fragile back and bummed up knees can’t handle the pressure.  You do whatever you can to get in a comfortable position, so you curl up in a fetal position and pray for some sleep. You know you’ll regret it later, because your knees will retaliate and become so stiff it is hard to straighten them. This in turn makes moving even more of a task because, your knee likes to stay bent. This is just an example of what it is like to have chronic knee tendonitis.

When you finally decide to get up for the day, you’re stiff as an ironing board and the muscles in the backs of your legs are so tight they almost feel as though they’re jumping. I have spent countless years trying to remind my body that it is not a frog, but it just refuses to listen to me! This is what it is like for me to have quadriplegic spastic cerebral palsy.

You wake up with your hair sticking up like a troll, and you decide there is no way you can continue to look like this, even if you are a writer and work from home.  However, before you get into the shower, you have to mentally prepare yourself for the task before you. Often, showering is an activity that requires a ton of energy for a person like me. It is almost comparable to hiking the Grand Canyon.  I have to prepare myself for sitting for at least 10 minutes while I bathe. This leaves my muscles feeling tight and jumpy like a Mexican jumping bean. They burn and push me to the point of collapse, but I have to get clean.

Once I am finished with my shower, it is important for me to take a breather and rest a little while.  I almost feel like I need a shot of five-hour energy from simply performing the daily task of showering. It is important for me to listen to my body often and rest when it gets tired. Living with chronic pain is often utterly exhausting, and you spend a good chunk of your time wondering when you’ll cross that finish line and take that victory lap.

I am a stubbornly ambitious person. I love to stay productive and busy. I have formulated a routine for myself. I am an independent writer, and I am working on my life story. I also write articles for several sites advocating for my disability and chronic pain conditions. I don’t particularly like to stray from my routine because it leaves me bored and with too much time to think. When I get bored, depression starts to sink in because I start to think about things I shouldn’t to fill the empty void and the lulls in my mind. Uninhibited silence is just not good for me.

However, my reality requires that I must stray from my normal routine on some days and just rest. A rest day means I am wrapped up in a blanket and snuggled in my recliner watching movies and TV. This often means I also end up falling asleep and taking little cat naps throughout the day. I figure my body must need the rest if I continually fall asleep. Rest days can be a good thing for my body, which is always fighting against me. I just prefer days when I can be as active as possible and busy.

Living with chronic pain can also cause intense anxiety.  It can make you extremely nervous and on edge because you simply never know how you may feel. This unpredictability can leave you feeling tense. There is no doubt I will be in pain, but the severity of the pain level can vary day to day. The situation which provokes the most anxiety is when I have a hip contracture. I also have hip dysplasia and bone on bone arthritis in my right hip. This is a condition in which your hip does not fit in its socket correctly as a ball and socket joint should. As a result of this, my hip bone rubs up against the bone, constantly causing friction and pain. When I have a contracture, my hip freezes in a bent position and refuses to relax. These episodes can last for hours at a time. In fact, my longest episode lasted a whopping six hours! This causes me to almost collapse in pain and makes breaking down in mountains of tears a guarantee.

Like the devil on your shoulder, chronic pain pushes you above and beyond your limits.  It tries its best to push you to the end of your rope. It tries its hardest to change who you are and who you will become. I will be honest, it is hard not to conform. However, I use various coping mechanisms to keep my head above water and most of all, my mental health intact. I exercise positivity by constantly reminding myself that although difficult and limiting, I live an incredible life. I am fortunate to wake up every day healthy despite my deteriorating physical state. On the days when it is cool enough to spend time outdoors, I revel in the sunshine and the tweets of the sweet birds that so effortlessly fly in the sky above my head. I take the time to give thanks for the beauty that surrounds me.

On an almost daily basis, I color in adult coloring books. I have around 100 coloring books to choose from and several sets of glittery and fun pens to color with. I adore coloring because it keeps me strong despite all of the stress buzzing around me like the world’s biggest bee. It keeps me calm in the middle of my body’s storms and literal thunderstorms outside. Coloring takes my creativity to the next level, and it helps me soar with self-love and confidence.

Pain can change you, but the best thing you can do is remember what keeps you whole. What keeps you going? What helps shine a light down your dismal tunnel? I know September is chronic pain awareness month, but for me and many others, promoting and spreading awareness is vital every day. I hope to continue to help others live an enriching and positive life, while also bringing the issues we fight with every day to light.