Life with HSP11: Part - 8
🕰️ A New Chapter Begins
Time passes differently when you live with a rare genetic condition like HSP 11. Each day is measured not just by hours but by effort—how long it takes to walk a few steps, how many times I’ve fallen, or how many spoons of energy I have left by noon. But time has also taught me something profound: progress is not always fast—but it is still progress.
🏃♂️ The Struggle Between Mind and Muscle
HSP 11 causes stiffness, weakness, and spasticity, especially in the legs. But the biggest fight is between what the mind wants and what the body allows. There are moments where I try to take a step, and my legs freeze. My brain sends the signal, but my body hesitates. It’s frustrating—like being trapped inside a body that’s constantly resisting you.
But slowly, I’ve learned to work with my body, not against it.
💡 Rediscovering Independence
Even with mobility challenges, I’ve found ways to regain some independence. Assistive devices like walkers or orthotic braces may feel limiting to others, but to me, they are tools of freedom. With them, I can move without constant fear of falling. I can go to the store. I can sit in the park. I can do things on my own terms.
Independence with HSP 11 is different—but it is deeply empowering.
💬 The Importance of Mental Health
What often goes unnoticed in HSP is the mental health toll. Coping with a progressive condition brings waves of anxiety, depression, and isolation. There were days I didn’t want to get out of bed—not because I couldn’t, but because I didn’t see the point.
But therapy, mindfulness, journaling, and speaking openly helped me fight back. Asking for help isn’t weakness—it’s wisdom.
🧑⚕️ Small Gains, Big Victories
Physiotherapy is still part of my weekly routine. And though improvement is slow, every gain matters. Raising a leg higher. Holding balance for 30 seconds. Standing without support for a few minutes.
These things might sound small—but to me, they are evidence that I’m still moving forward.
🫂 Family and Friendships: My Support Pillars
There are people who have stood beside me even on my most difficult days—family members who carry my emotional weight and friends who see me beyond my diagnosis. Their love reminds me that I am not alone.
HSP 11 affects one body, but it also strengthens every bond that surrounds that body.
🔄 Dealing with Setbacks
There have been setbacks too—hospital visits, medication side effects, relapses in mobility. But I no longer see setbacks as failure. I see them as part of the journey. Rest is not quitting. Taking time is not giving up.
The goal is not to win a race—but to keep showing up.
🔭 Looking Ahead
I’ve stopped searching for a miracle cure. Instead, I focus on quality of life. Research is advancing—gene therapy, new medications, and assistive technologies may one day make a huge difference. But even if they don’t, I will continue building a life that’s meaningful, even with the limitations.
My dreams may change—but they never disappear.
💖 Conclusion: Still Here, Still Standing
Part 8 of my journey is about resilience. Not flashy strength, not loud victories—but quiet persistence. HSP 11 may slow me down, but it hasn’t broken my spirit.
Every morning I rise is a win. Every step I take is proof that I am still fighting.
And every word I write is a promise: I will not give up.
📘 Coming Soon:
Part 9 – “Dreams That Still Burn Bright”
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