Life with HSP11: Part - 5
As time goes on, I’ve realized that living with HSP11/SPG11 isn’t just about physical limitations — it’s about learning to adapt, to redefine what “normal” means for me.
There are days when my legs feel heavy, like they’re filled with sand, and I have to fight for every step. But I’ve learned to be patient with myself. I know that even slow progress is progress.
Physical therapy has become a part of my routine. Some days it feels like a chore, but I remind myself it’s an investment in my future independence. Every stretch, every exercise helps me keep moving forward.
Social situations can be tricky. People sometimes don’t understand what I’m going through. They might not see the effort it takes for me to stand up or walk. I’ve learned that it’s okay to explain — but it’s also okay to let go of the need to constantly explain myself.
Emotionally, there’s a rollercoaster inside me. I get tired of feeling like I’m different, like my body is working against me. But then there are days when I feel strong — when I realize that my experiences have made me more empathetic, more resilient.
I’ve also started connecting with others who live with HSP11/SPG11. Talking to people who truly understand the journey — the fears, the frustrations, and the small victories — makes me feel less alone.
More than anything, I’m learning that I have the right to dream, to hope, and to fight for a future that’s bright. HSP11/SPG11 is a part of me, but it doesn’t get to define my story.
Every day, I’m finding new ways to adapt and thrive — and I know that no matter what tomorrow brings, I’ll be ready to face it, one step at a time.
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