I like to consider myself an artist when it comes to coping with lupus and the daily struggles it so graciously provides. I found myself being unable to overcome bad days and succumbing to the pain and fatigue on a daily basis. My mental game was not as strong as I needed it to be, because at 18, your life experiences do not typically prepare you for such a life-altering and suppressing disease. There have been times when I am told, “You look great and lupus doesn’t seem to limit you.” I know those folks mean well (at least that’s what I tell myself); however, I have been limited. I am limited. I have had to adapt to new life paths and friendship goals as the years pass in order to enjoy the life I was given.
I have found that no one is truly ready to struggle and receive a chronic diagnosis. For years I struggled with balancing my career goals of pursuing law enforcement, continuing to attend college and establishing strong contacts through internships. By the end of my junior year I finally accepted that I probably could not take on the heavy workload and grueling long hours of law school. That was something I had wanted since high school in pursuit of a field agent position in law enforcement. That physical ability to stay up late, read until the wee hours of the morning, fill my body with caffeinated beverages, eat poorly and still make time to see friends was dwindling away and very clearly out of reach.
This is my 11th year of having SLE and I have found it takes years to train your mind and willpower to metaphorically “crush” the chronic pain on a daily basis. I have had years of tears and deep breathing exercises to get through the days where I am so fed up with the state of my disease, my career and my personal life. Every lupus patient has their own tricks that have worked for them to get through the side effects, procedures and unknowns. Here is what I have found that works for me.
- Close your eyes.
Imagine the disease, wherever it manifests at the moment, as a color or object. This could be in the form of a tiny colored bubble with an angry face, the villain from The Little Mermaid or a floating blob. For me, it is a green-hued smoking “thing” that hauntingly floats around. Any joint or piece of cartilage it decides to attack turns that hue of green. This way, I have been able to imagine it diminishing when I lie down to rest, or take my medicine and as the pain subsides, so does the hovering green smoke. Sometimes the unseen can seem less terrifying once you put a face or character to them.
22Don’t Forget to Breathe.
You know that wild breathing function our lungs perform all day, every day? Work with it! Meditation has such a powerful effect on the brain and body, so I have found that using it to exhaust the stress and extra cortisol my body builds up due to the anxiety lupus caused me to develop from pain and the extra strain I have to put on my body, really helps me to bring my pain level down.
I begin by placing my hand over my stomach and feel my breath naturally move in and out of my lungs. I take a deep breath in and slowly exhale every drop of that breath, imagining that nasty green monster is dissolving with each exhalation. I have found practicing this multiple times a day has helped me to put a metaphorical leash on my pain most days.
- Train your thoughts.
Even though sometimes we hate to hear it, the concept of positive thinking and looking forward to something as simple as your favorite TV show premiering tonight can be a major step to a stronger mind. To get to where I am today, I have had to let out the tears, use what my body does have left and compensate for what the pain medications or infusions cannot. I have reached a point in my journey where there are not any medications left I have not tried.
Yes, my body feels like it is burning from the inside out and there is absolutely no comfortable position to retreat to on most days. But, I do know I was worse off 10 years ago. I am better because of the way I chose to handle every challenge and push through the nasty side effects and found the right doctors for me. It is through my journey of building a strong mind that I have been able to rebuild and try to maintain a lifestyle that has kept my lupus and Crohn’s disease from continuously attacking my organs again.
I know there may come a day when my heart has that sandpaper feeling again, or my lungs become pleuritic and there is scar tissue being deposited. At that point I know I will have the mental tools to support the physical tools to continue to live my best self, even though that now means living with lupus. So the next time I hear how I “do not seem limited,” I know it is because of the work I have invested in myself that has led me to winning in this life.