My Life and Lessons with Lupus

woman stands on mountain over field under cloudy sky at sunrise
Photo by Victor Freitas on Pexels.com

I’m stuck. Stuck in a body that cannot keep up with its aspirations. I am only 26, where age has become nothing but a number. I say that because I almost never feel my own age. In reality, my age fluctuates from 56-86. But, it never stops me from trying. If Lupus has taught me anything, it’s shown me to never back down, never give up, because you just don’t know what’s at the next turn.

Lupus is known as the “cruel mystery”, which couldn’t be a better description. I go to sleep every night worried and wake up in the morning evaluating my pain. Some days it can take me 30 minutes to get out of bed others, 2 hours, then you have your days where leaving bed just isn’t going to work. I can say I have no idea what each day will bring. I feel like the mystery can be one of many things.

How much pain am I going to be in? How fatigued is my body? Do I need to get more sleep? How far will I be able to walk today? How far will I be able to walk today? Am I going to be productive? Will I be able to cook myself food? Can I actually handle taking a shower? The list goes on…

It’s extremely difficult for me to plan. Because even though I have good intentions, sometimes I am not able to follow through. I am not unreliable,  its Lupus which makes the decision for me.

I live in a constant state of not letting this disease take over my life and fighting the beast inside of me. Lupus is not worried about my plans I’ve made or what I want do. Lupus doesn’t discriminate in any way shape or form.

Living with any chronic illness changes your life. It’s something you are never prepared for and will most likely not see coming. I think I will forever be learning about my illness, body, and how to treat myself.

There are moments that I still feel that empty sorrow inside. Those times where I’m reminded of the truth, that I live with an uncurbable disease that will never go away. As time has passed, I can say one thing! I have learned to adapt. Do I fall? Yes. Do I flare? Most definitely. Do I honestly feel that much better? Not really. But mentally, I do. I feel as I am learning what works for and what doesn’t. I no longer have certain fears I once had. I am more brave today than ive ever been in my life. I might not be physically strong but I feel stronger today than I have in years.

Lupus is teaching me lessons. Lessons about myself. Talents I didn’t know I had, things I didn’t know I liked, courage, and how to say NO. I am learning about the people in my life, my disease has truly put so much into prospective. People I had gone above and beyond for, nowhere to be found. But that’s OK.

I can say that I feel wiser about my life, I appreciate life more than I ever did before. I see life as the delicate thing it is, I love much deeper, I feel much stronger. I can say that even though this disease kicks my behind, it has changed a lot for me, and not all for the worse. If you would have told me, I’d say this years ago, I would have laughed. But today, even with lupus, I feel like I’ve found more of who I am more than ever before.

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