Cómo describo la fibromialgia a personas que nunca la sintieron

¿Alguna vez has querido sentir lo que es tener fibromialgia? ¿No? Je, yo tampoco. Pero he llegado a conocer los entresijos de esto muy bien (sin duda mejor de lo que siempre quise) y debería poder informarle lo suficiente de mis experiencias para que tenga una mejor comprensión de cualquier persona en su vida que Puede tener una enfermedad crónica, dolor u otros problemas de salud. Así que respira profundamente y prepárate para probar algo nuevo. Un viaje por mis ojos, si quieres.

¿Recuerda la última quemadura solar realmente grave que tuvo, la que lo hace consciente de cada centímetro de su piel? Picaba por todas partes, se sentía apretado y caliente. Permítase sentirlo ahora: imagine que tiene una sensibilidad estrecha y una sensación de desconcierto a cada toque que se extiende a cada parte de su piel. Ahora todos pueden sentir las costuras en su ropa e incluso están muy conscientes de dónde se tocan los dedos y los pliegues de la piel en los codos y las rodillas. El cuello de su camisa está apretado y la cintura de sus pantalones. incómodo, claustrofóbico.

Pero el tacto no es el único sentido que aumenta. Los sonidos están empezando a hacerse más fuertes de lo que parece absolutamente necesario y, a menudo, desagradables. Cuando vas conduciendo, las luces pueden parecer demasiado brillantes y, a veces, brillar de forma inesperada. Tienes que conducir con mucho más cuidado durante la noche: de repente, los faros parecen estar fuera para atraparte. Los olores son demasiado fuertes y los que antes eran agradables, o los alimentos que te parecían deliciosos o simplemente indiferentes, ahora son viles y, a veces, completamente fuera de lugar, son simplemente nauseabundos.

¿Alguna vez has tenido gripe? Ese tipo desagradable de temporada que te hace sentir tan adolorido que incluso después de tomar cuatro Motrin, ¿aún puedes sentir todo tu esqueleto? Si tienes es una referencia útil. Si no, ¡alégrate y sigue vacunándote contra la gripe! Imagínese despertarse con ese doloroso sentimiento pesado un día, solo que es alarmantemente peor de lo normal. Gime para sí mismo, piense: “Bueno, esa vacuna contra la gripe no funcionó” y suspiró, esperando que desaparezca después de una semana o así, como lo hizo la última vez. Sólo después de dos semanas, tres, empiezas a preocuparte. Y entonces, se pone peor.

Comienza a hacer tus extremidades pesadas, cansadas. Al igual que la sensación de caminar en la arena, es posible que olvide algunos días que no tiene la energía que solía usar y que exagera, solo para pagar la deuda de energía durante dos o tres días en la cama. En estos días, y en algunos días aleatorios sin ninguna razón previsible que no sea el cruel sentido del humor del destino, puede despertarse solo con la energía necesaria para levantarse, vestirse y comer.

El compañero de la fatiga crónica y el dolor es algo que se llama “niebla cerebral”, que suena tonto. No es. Puede hacer que te sientas tonto y avergonzado, y tratar de ocultarlo y reírte como si nada. Pero sus llaves pueden terminar en el congelador, la leche podría ir en el armario, y se encontrará en una habitación al azar en su casa mirando la pared y preguntándose: “¿Qué iba a hacer ahora?” Cuatro veces al día. Ir de compras es una broma, incluso si es mucho más … caprichoso ahora. Tocas todas las telas de la ropa para ver si son lo suficientemente suaves y le dices a tu cónyuge: “¡Oooh, siente esta toalla!” No te preocupes, se acostumbrarán. Mi esposo tiene que recordarme lo que estaba buscando cada vez que me distraía con los malditos adhesivos de venta o con toallas bonitas … Un objetivo es un lugar peligroso.

Pero créanlo o no todo esto, hasta el último bit, palidece en comparación con el dolor. Se convertirá en tu mejor amigo, tu compañero nuevo y constante. Algunos días es tolerable, y solo hace que todo sea un poco más brillante y las esquinas de tus ojos un poco más apretados. Hace que su temperamento sea rápido, pero tiene un buen manejo de las cosas (simplemente no le pregunte a su esposo qué piensa él). Otros días, bueno … esos días no nos gusta pensar tanto. Algunos de ellos se gastarán buscando distracciones, como libros y películas. Es probable que conozcas los cines con asientos cómodos, porque los que son incómodos son aquellos a los que ya no puedes ir. En el otro de estos días, los malos, podrías fingir que no existes.

Sé que he pintado un cuadro bastante sombrío aquí, y uno que puede o no creer es exagerado. Si lo hace o no, probablemente tenga mucho que ver con si ha tenido experiencia con dolor crónico o con alguien que lo tenga. Pero te diré algo más que puedes creer o no, y eso es lo que estoy agradecido por mi fibro. Me enseñó más sobre mí y la vida que cualquier otra cosa que haya experimentado.

Nunca supe qué tan suave era el pelaje de mi Yorkie antes, ni qué encantador sería el olor de la lluvia después del smog. No pude apreciar la música de la lluvia en el techo cuando cerré los ojos después de un largo día. Hay un equilibrio que se encuentra en el dolor, para mí, cuando lo busco.

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