Una carta abierta a mis seres queridos necesita saber sobre la vida con fibromialgia

Una carta abierta a mis amigos y familiares:

Es difícil explicar la fibromialgia, la osteoartritis y las enfermedades crónicas. Es más que un dolor constante; es el agotamiento, la falta de energía y una multitud de otros síntomas que hacen que el funcionamiento cada día sea realmente difícil. Algunos días son mejores que otros, y luego tiendo a exagerar las cosas para que se hagan.

Es como si todo estuviera amplificado: temperatura, olores, sonidos, sensibilidad a luces brillantes y dolor. Solamente todo.

El problema es que no importa cuánto lo intente, cuando el tanque está vacío, no hay reservas y los niveles de tolerancia se vuelven insignificantes. Tengo que aprovechar la energía que tengo, y es una mala gestión y muy a menudo algo que tengo que pagar más adelante. Tiendo a preferir estar solo porque la interacción social se ha vuelto arduo.

Algunos de los síntomas que experimento son:

  • Dolor generalizado
  • Rigidez
  • Dolor en las articulaciones
  • Dolores de cabeza
  • Diarrea, malestar estomacal, problemas digestivos
  • Energía limitada
  • Insomnio
  • Agotamiento
  • Depresión
  • Ansiedad
  • Náusea
  • Niebla del cerebro
  • Dificultad para concentrarse
  • Dificultad para hablar, pronunciar las palabras correctas, tropezar con ellas
  • Fluctuaciones de vista
  • Problemas de equilibrio
  • Sinusitis crónica
  • Entumecimiento y hormigueo en manos y pies
  • Hinchazón de cara, manos y pies
  • Palpitaciones

Estoy haciendo lo mejor que puedo. Algunas personas no entienden la enfermedad. He decidido hablar claro y en lugar de encubrir lo que siento y estoy haciendo lo que tengo que hacer para permitirme vivir y enfrentarme lo mejor posible. Esto incluye reducir los factores estresantes, no hacer lo que no puedo hacer cómodamente, etc.

Tengo la sensación de que algunas personas opinan que no puede ser tan malo. Por supuesto, soy consciente de que la mayoría de la gente no puede entender completamente algo a menos que les suceda a ellos, pero déjenme decirles que no es tan malo … es mucho peor.

Yo lucho todos los días, así que por favor alivien las expectativas, acepten que no puedo hacer algunas cosas, respeten las limitaciones y no se tomen las cosas en forma personal. Sé que es difícil para alguien que puede limpiar la ducha o el inodoro fácilmente, por ejemplo, para entender cómo es cuando las tareas cotidianas adquieren proporciones descomunales.

Si quieres ayudar, pregúntame, no asumas que sabes lo que es mejor para mí. Las cosas no son siempre como parecen. Probablemente me veo bastante bien. Trata de no juzgar a menos que camines en mis zapatos. No quiero simpatía, solo necesito que intentes comprender.

Estoy haciendo lo mejor que puedo.

Estoy aprendiendo que tengo que hacer lo correcto para mí, no lo que es mejor para todos los demás, y si eso te ofende o pisotea tu sensibilidad, lo siento. He pasado por el cuidado de no molestar a nadie ni herir sus sentimientos. Estoy demasiado cansado por todo eso. Estoy aprendiendo a decir “no” más a menudo.
Tony sabe y entiende. Él me ha visto al final de mis ataduras con demasiada frecuencia últimamente cuando el dolor es tan malo que estoy fuera de mí y las lágrimas están cayendo como consecuencia porque no hay nada más para eso.

Si todavía no está convencido, hable con mi médico, ella lo pondrá en lo correcto

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