“You woke up.
You got out of bed.
You got dressed.
These may seem like small things. But when you’re living with a chronic illness, these small things may take enormous effort and determination.
Not everyone will understand your accomplishment today, so I just wanted to take a moment and say…
‘WELL DONE, MY FRIEND.'”
I have not had a day without pain since the afternoon of February 1, 2013 when my L4/L5 disk in my back herniated. Over the course of the past 574 days, I have hurt in some capacity. I have been on a roller-coaster ride of excruciating, throbbing, and aching pain. The last time I experienced hurting to this degree was from my original polycystic kidneys, which were removed more than 12 years ago.
Pain can take a toll on us, both physically and mentally. It can wear us down. Change our ability to do things we once loved. I love being active and hiking, which I have been unable to do for a long time. I spoke to my back surgeon a couple weeks ago, as the road to recovery has been more arduous than I expected. The last thing he said to me was, “Keep plugging away.” I have severe muscle atrophy from the past year of being inactive. I am not only recovering from back surgeries performed earlier this year, but also trying to regain all the muscle strength I lost.
During the past 82 weeks of my altered lifestyle, I have taken pride in getting up, showered, dressed and ready for the day even if my only task is to endure my health challenges with as much grace as possible. By presenting myself like this, people have commented that I look like “the picture of health.” When reality is that getting myself presentable for the day might have been the greatest thing I was able to accomplish.
When living with a chronic illness and pain, it is hard for others to understand what we are enduring and what our day-to-day lives are really like. Polycystic kidneys can become massive and polluted with cysts. Others can’t imagine what it is like to look at an ultrasound and see our own kidneys look like this. Polycystic kidneys and back pain can cause unbearable pain. Others can’t comprehend what this feels like unless they endure it. Although we may look “fine” and our bodies may not outwardly illustrate how we feel and the pain we are living with, we can’t fault others for not understanding our illness and pain. All we can do is educate them and take the best care of ourselves.
Last weekend Noah and I attended a concert at Naggiar Vineyards where we listened to Journey Unauthorized. I rested and iced my back throughout the day prior to the event. Noah and I got up from our chairs a couple times during the event to stretch our legs and loosen up my back. Throughout the second half of the show, we sat in lawn chairs on the grass. I like to “people watch” and I had a lot of fun watching others dancing in front of the stage. I am not a big dancer, but I was envious watching them move around, as I know I would not be able to do that due to my sore back.
At the end of the event, they played a slow song that Noah and I slow danced to. Then the band played their last song and people swayed their arms back and forth in the air. Noah and I joined in and before long, my back started to hurt. I looked around and people were jumping up and down. I wrapped Noah’s arms around my waist. I hope as my body heals, it will allow me to be a little more free-spirited like the others at the concert. I also hope I will be able to get back on the hiking trails with my husband. I know it will take time and hard work, but I am committed. As my eyes scanned the crowd of happy, dancing people, I spotted a man wearing a prosthetic leg who was dancing fast and freely. I was inspired and thought if he can do that, I can one day too. So no matter what challenge we are facing, a chronic illness, PKD, back pain, here’s to us “plugging away.”
What helps you to keep “plugging away?”