March 14. Second day on winter Tenerife.
I woke up with intense pain. Outside the window it was still dark, but I sensed that dawn would come in a few dozen minutes. I got up with the same thought as always: when will this pain let up? But my heart already knows — not anytime soon. Mornings like this are written into this disease.
I boiled water, as every morning, to hydrate my body with warm liquid. Cup in hand, I went out to the courtyard to listen to the sound of waves. It was growing gray outside. Overhead, clouds announced there would be no sun — standard on the north side of the island, especially in March. And yet the wind carried something beautiful — the scent of the ocean, iodine, moisture. I inhaled slowly, again and again, taking long, mindful breaths in and even longer breaths out.
My senses registered the beauty around me, but the pain wouldn't let me fully marvel at it. That thought kept returning: when will this end?
Sometimes, with tremendous compassion, I look through the eyes of imagination at my own face — or rather at the part of it that screams with pain. That scream takes many forms: burning, stabbing, pressure... With pain, I am not fully myself. I've become a little bit someone else.
I hear the alarm. Time for breakfast, and we're heading for the peaks. But first, something for me. My companions understand... or at least they try to.
We drive south — there's more sun there. I sit on a rock by the natural pools. The guys swim, while I need warmth and quiet. The nerve is still screaming, but not as loud now. My lip stops stinging, my chin seems to ease. What remains is a feeling as if someone punched me in the face. I know it won't go away, but I have to keep going.
We drive toward the foot of Teide. I know I'll climb it someday. But not today. Today we choose scenic trails to admire the volcano from below.
At altitude, it gets cooler. We put on jackets; I wrap my neck and face in a scarf. The wind blows, but the sun shines fully. We start walking.
I walk last. I breathe calmly, though the path is demanding. It's beautiful. I can't stop marveling at how extraordinary our world is — how many millions of years it took to shape all these ridges, cracks, and raw formations.
Captivated, I immerse myself in this silence and space, letting my thoughts slow down.
I walk through a landscape created by fire and time, and beside me walks pain — like a ball and chain, like an uninvited companion. It drains energy. Sometimes I want to stop and scream. People would think: "she's crazy." But I'm not crazy.
I am a person with neuropathy following trigeminal nerve damage.
Sometimes I think: would anyone looking at me, or at a photo of me, say that this woman has been living with painful trigeminal neuropathy for 12 years — a disease that cannot be seen, yet can turn a life 180 degrees?
It's not easy. And others don't care — everyone carries their own weight after all. But how much I would give for those "ordinary" problems, just to not feel this pain.
I once read words that will stay with me forever:
"It's an interesting and fascinating disease. It's not directly dangerous, it doesn't shorten life. In return, it provides pure agony, a foretaste of hell on earth, where pain offers not even the hope of respite. And those around you mock. Mock away — something will get you too."
These words are harsh, but within them lies helplessness and pain that sometimes cannot be expressed any other way. None of us wants to pass this pain on to others — we simply dream that it would be better understood.
All I want is a world where people pause a moment longer for another person. Where they try to understand instead of judge. Where there is more tenderness, mindfulness, and empathy.
Because living with pain is already hard enough. And a little understanding can make it at least a little lighter.
In future posts, I'll return to more analytical topics, but sometimes I want to share with you what's on my mind.
And I'm deeply grateful to Mr. Jarosław Szustek for allowing me to use his words describing life with pain. They have resonated within me since the day I first read them — they are powerful, but they capture the essence of this disease with extraordinary precision.
Natalia — since 2014 I've been living with trigeminal nerve pain. I write in plain language, based on reliable sources and personal experience. Read my story →
Frequently Asked Questions
What is trigeminal neuralgia?
Trigeminal neuralgia is a chronic facial pain condition. It manifests as sudden, severe, usually one-sided pain attacks — often described as an electric shock. A single attack typically lasts from a few seconds to about two minutes.
What is the difference between neuralgia and neuropathy?
In simple terms: neuralgia primarily involves paroxysmal pain along a nerve, usually without loss of sensation. Neuropathy involves nerve damage that more often causes constant pain along with numbness and sensory loss.
Does alpha-lipoic acid (ALA) help with neuropathy?
Some people use ALA as a supportive supplement, but evidence is limited and comes mainly from studies on diabetic neuropathy. It is considered a supplement, not a proven therapy. Always consult your doctor.
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