The Metamorphosis of a Workaholic Lupie
Not me! I did not take it well when my extremely compassionate and thorough rheumatologist said: "Have you considered retiring?" My mind began to race… 'She can not be talking to me. I am a career nurse! I've spent years honing my craft and becoming an expert in my field. I have patients. I can't BE a patient.'
Realizing that all of my thoughts were probably registering on my face, I politely responded, "Ummmm no. I'm not quite ready for that yet." She kind of shook her head, then carefully explained that my disease process was very aggressive and my symptoms could not be managed if I continued to work. I thanked her for the information, told her I would think about it and went back to work. I was a workaholic.
You can't hide from lupus forever
I drove home, lost in my thoughts — that moment with my rheumy hit like a runaway train. I had to accept my incredibly uncomfortable truth and face my medical reality. Every day revolved around trying to hide vertigo, muscle spasms, fatigue, and near-constant joint pain that often caused me to fall. I downplayed each time I dropped my pen because my hands spasmed into painful positions, why I gripped the arms of my chair when the room began to spin and why I reluctantly used a wheelchair as a compromise to keep working.
One day, my boss came into my office to tell me that she respected my dedication to our staff and patients. However, she was afraid I would die at my desk if I didn't slow down. There was so much she didn't know. I hid the pain, nausea, and vertigo medications that I kept in my purse just to get through the day. My strength and endurance continued to worsen, and my pain and fatigue continued to increase as the months passed. My carefully built facade of balance was failing magnificently, but I couldn't let go. I still wasn't ready.
Reality slaps hard
My rheumy worked hard to control my symptoms. She kept increasing dosages, tightening physical restrictions, giving dietary suggestions, and adding medications, but nothing was working. She had no idea that I was secretly fighting against her. I was a strong wife and mother, I ran 5k and 10k races for medals, I was a nurse that could work long hours and make it look easy, I was a sister, daughter, and friend that could be there at the drop of a hat. I pushed past my limits to be there for anyone who needed me until the day I couldn't.
My legs refused to hold me up when I tried to get out of bed one morning. I fell to the floor as intense pain shot through my body. My heart felt like it was beating out of my chest. The room spun and rocked violently. It was so painful and disorienting that I promised I could see the sound and hear light. I had been reduced to a heap on the floor, near the foot of my bed. I finally listened to my screaming body. My condition was much worse than I wanted to admit. The flares were like angry ocean waves in a storm. As soon as I thought one was over, another one would come and knock me back down. I was out of control, and so was my lupus. There was no way I could not go back to work.
The comeback is real
My first few weeks were spent finally following my Rheumy's orders and trying to figure out who I was outside of nursing. I started posting about lupus simply out of frustration from not going to work. I wanted more information, and no one outside of rheumatology had any answers. My nursing skills were still useful, and they guided my research and helped me explain what I learned on my social media pages. Warriors from all over shared my thirst for information. Other people had some of the same questions I had, they actually wanted to hear my perspective, and some even found comfort in my posts. There was safety, understanding, and compassion in the lupus community. I found my voice and my purpose!
My passion has become to educate others, bring lupus awareness to the forefront, and support other warriors in the fight. I am finding joy in carefully choosing my daily activities to manage my energy. Sometimes, I get it wrong because old habits die hard, and I cause more flaring. That's when I just take a step back, rest, reset, and move forward with joy. Self-forgiveness is a whole and entire mood, but I'll talk about that another day. I have found peace, freedom, and fulfillment in "my Lupie retirement' and that is the best part, hands down. I only used to be a workaholic.
This is my lupie journey. I own it!
Have you experienced adverse side effects to your lupus medications?