Esta carta está basada en conversaciones con mujeres y hombres de todo el mundo con fibromialgia. Hay 10 millones de personas que la padecen. Quizás ayude a entenderlas. No querrás estar un día en sus zapatos o en sus cuerpos
-Tengo la predisposición de padecer dolor crónico, fatiga y problemas de concentración.
-Fui diagnosticada con fibromialgia, luego de meses y años de problemas físicos y emocionales.
-No es una enfermedad nueva. En 1815, un cirujano en la Universidad de Edinburgh, Willam Balfour describió la fibromialgia.
-A diferencia de las enfermedades, los síndromes como la fibromialgia, no tienen causa conocida, pero constituyen un grupo de síntomas y signos, los cuales desafortunadamente para el paciente se encuentran presentes a la misma vez.
-La mayoría de los síntomas y problemas emocionales asociados no son de origen psicológico. Esto no es un desorden en el cual “todo está en su mente”.
-Puede ser incapacitante y depresiva, interfiriendo con las actividades diarias más simples.
-Es fatiga muscular crónica, agobiada por una causa emocional muy grande, problemas económicos y emocionales.
1)MI DOLOR: No está causado por una inflamación. El tomar medicinas para la artritis no me ayuda. Mi cuerpo no resiste. No es el dolor que se mantiene en una sola parte del cuerpo. Hoy está en mis hombros, cervicales, mañana puede estar en mis piernas, brazos, o tal vez se haya ido. Mi dolor es producido por que las señales llegan a mi cerebro de forma impropia, posiblemente debido a los disturbios del sueño.
2)MI FATIGA: No solo me siento muy cansada. Estoy severamente exhausta. Yo quisiera participar de actividades físicas, pero no puedo. Por favor no te enojes si me viste de compras ayer o cocinando o arreglándome para salir y hoy no puedo moverme. No es que no quiera. Estoy pagando el precio por estresar mis músculos más allá de su capacidad.
3)MIS PROBLEMAS DE CONCENTRACIÓN: Tal vez no recuerde lo que te dije o hice. Esto no tiene que ver con la edad. Tiene que ver con los disturbios del sueño. Lo que también hace que mi vista esté siempre cansada.
4)MI TORPEZA: Si se me caen las cosas de las manos, o me cuesta coser o escribir, es que no tengo control de mis músculos. Si tardo en caminar u otra cosa, ten paciencia, en estos días tomo la vida y cada paso uno a la vez.
5)MI SENSITIVIDAD: ¡No puedo estar acá!. Eso puede deberse a ciertos factores como la luz brillante, ruidos muy agudos, multitud, olores. La fibromialgia ha sido llamada”el desorden que todo lo agrava”.
6)MI INTOLERANCIA: No aguanto el calor, humedad, demasiado frío. Mi termostato interno está roto y nadie sabe como arreglarlo.
7)MI DEPRESIÓN: Sí, hay días que prefiero quedarme en cama o en la casa. El dolor severo es implacable y causa depresión. Tu sincero interés puede sacarme del abismo.
8)MI ESTRÉS: Mi cuerpo no puede manejar bien el estrés. Si no puedo trabajar o delegar mis responsabilidades hogareñas, no es que sea perezosa. El estrés diario y la rutina pueden empeorar mis síntomas e incapacitarme.
9)MI PESO: Puedo tener sobrepeso o estar delgada. Esté como esté, no ha sido mi elección. Mi apetito está afectado.
10)MI NECESIDAD DE TERAPIA: Si necesito un masaje diario no lo tomes como un lujo.No sabes lo que puede hacer por mi,puede ser doloroso pero lo necesito.Puede ayudarme,lo mismo que hacer natación.
11)MIS DIAS BUENOS: Si me ves sonreir y funcionar normalmente, no asumas que me siento bien. Sufro de dolor crónico y fatiga que no tiene cura. Puedo tener días buenos y semanas, de hecho son esos días los que me permiten seguir adelante.
12)MI INDIVIDUALIDAD: Aún los que sufrimos de fibromialgia, no somos iguales. No tengo los mismos síntomas que cualquiera que tenga esta condición.
Espero que esto te ayude a entender cuan devastadora puede ser esta condición, aprender a vivir con ella, como parte de mi vida, tratar de hacer lo que puedo para aliviarme.
En esta condición es muy importante, por no decir fundamental, el apoyo emocional de la familia y amigos. Un:¿Cómo te sentís hoy?, animarme a salir, un abrazo, todo, por más mínimo que parezca es enorme para uno y quizá ese día resulte mejor.
Gracias por haber leído esto y dedicarme de tu tiempo. Tal vez desde ahora puedas comprenderme mejor. De veras que agradezco tu interés y apoyo.” “click” en COMPARTIR
Para aquellos que no entienden la fibromialgia
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