Dancing with the Butterfly and Taking Control of My Lupus Journey

Living with lupus is like waltzing with a butterfly in a hurricane. One moment, I'm basking in the sunshine of energy. The next, I'm swept away by a whirlwind of joint pain and fatigue. It's a constant ebb and flow. A difficult dance I never signed up for but have learned to navigate with grit and grace.

For years, I was lost in the storm. Every flare felt like a betrayal. Furthermore, every symptom felt like a cruel reminder of the unpredictability that lupus had woven into my life. But then, I discovered a powerful quartet of tools that helped me reclaim control: symptom tracking, better nutrition, gentle exercise, and unwavering attention to my mental health.

Tools to reclaim control

Symptom tracking

Tracking my symptoms became my map. I meticulously note the ebbs and flows of fatigue. In addition, I jot down the whispers of joint pain and also make note of the sunshine of good days. Armed with this information, I work with my healthcare team fully. It helps me if I need to adjust my medications, identify triggers, and anticipate flares. Ultimately, I started tracking not necessarily to eliminate the storm, but to learn to weather it.

Better nutrition

Next came the kitchen, my new refuge. I traded inflammatory processed foods for a vibrant symphony of colors and textures. Fresh fruits and vegetables became my allies, omega-3-rich fish my armor, and leafy greens my cheerleaders. Every bite feels like a small victory. It has become a way to nourish my body and support its fight against the invisible war within.

Gentle exercise

Movement, even the gentlest kind, has become my medicine. Stretching in the morning sun is a delight. I always do morning sun because I can tolerate it. I am photosensitive, so I have found ways that work for me to get some sun. Make sure you find ways that help you the most. Anyway, back to the gentle exercise. A slow walk amidst the whispering trees brings me peace. Undoubtedly, a gentle yoga flow in the quiet of my living room is a small piece of heaven to me.

Each movement for me is a reclamation of my body. A form of taking control of my lupus. In fact, it is a defiance against the fatigue that threatens to hold me captive. My body might have limitations, but my spirit dances freely when I am in movement.

Attention to mental health

Finally, I turned inward. Therapy became my sanctuary. It became a space where I could unpack the emotional burden of chronic illness. I had to learn to acknowledge my fears, frustrations, the grief. Eventually I had to figure out how to gently guide them away. Meditation became my anchor, mindfulness my guiding light, and self-compassion, the softest balm for my weary soul.

Dance with the butterfly

Today, the dance with my lupus is still ongoing. That is to say it's not a desperate struggle anymore. It's a waltz that can become chaotic if I let it. Without a doubt, it is a collaboration between my mind and body. Most importantly I am fueled by knowledge, nourishment, movement, and the unwavering strength of my spirit. By the same token, I track my symptoms, eat the rainbow, move with the sun, and nurture my soul.

Because even in the dance with a butterfly in a hurricane, there's a beauty to be found. Moreover, there is a resilience to be celebrated, and a life to be embraced. All of this is done one precious moment at a time.

Lupus won’t define me

So, if you're lost in the storm of chronic illness, remember, you have the power to reclaim your dance. Find your tools, your map, your music. Move with intention, nourish with wisdom, breathe with acceptance, and most importantly, never lose sight of the butterfly within. You are stronger than you think, and even in the hurricane, you can learn to fly.

Lupus is still a part of me, but it no longer defines me. I've traded fear for knowledge, weakness for strength, and isolation for a community of thrivers beyond lupus. Symptom tracking is my compass, food is my fuel, movement is my medicine, and mental well-being is my shield.

This isn't just managing lupus, it's charting my own course, navigating the storms and soaking up the proverbial sunshine, one step, one bite, one breath, one mindful moment at a time.