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Bueno, aquí estamos, no sólo tiene la vida como la conozco cambiado, por desgracia, también lo ha hecho la suya! Ahora estamos en un nuevo viaje, no una diversión, no muy emocionante, pero más de un viaje de escalada de montaña con muchas paradas y desvíos por delante. Así que aquí hay algunas cosas que debe saber de entrar en este viaje que puede hacer que sea más fácil para usted para hacer frente conmigo. Como ya saben, tengo una enfermedad crónica y la vida nunca será la misma para cualquiera de nosotros. No es una enfermedad que puede ver, pero me vea en dificultades. No es una enfermedad que se puede sentir, pero ver mi dolor. No es una enfermedad que usted pueda entender, pero ver mi frustración. Las cosas nunca serán los mismos pero pueden tratar de mantenerlos lo más “normal” posible por el bien de nuestra familia. Entonces, ¿cómo explicar plenamente los retos que tenemos por delante? Hay muchos aspectos de la enfermedad / dolor crónico que yo quiero que entiendan lo que vamos a empezar por el principio y voy a explicar lo mejor que pueda para que sepa y pueda entender completamente lo que será este viaje. Hay un montón de diferentes áreas para cubrir así resistir, que va a ser un viaje lleno de baches.
Entonces, ¿qué es esta cosa llamada fibromialgia? Bueno, hay tantas teorías y definiciones de lo que es que todo tipo de malla juntos y algunas definiciones suenan totalmente confuso y no tienen sentido mientras que otros lo hacen parecer como un montón de síntomas sin ningún significado real o definen así que un diagnóstico que debe ser todo en la cabeza, pero vamos a darle un nombre de todas formas. Así que en primer lugar, tengo esta “condición” que afecta a la forma en que mi cuerpo responde al dolor. La parte “divertida”, todos los días podría ser diferente, así que puede tener dolor en las articulaciones un día, y dolores punzantes en las piernas un día más. Así que vamos a empezar con el dolor.
Mi dolor puede variar desde una molestia a extrema de un día para otro e incluso de una hora para la siguiente. A veces puede ser difícil para que te diga exactamente lo que duele y cómo le duele, pero sólo sé que es muy incómodo y duele. Los días “molestos” son los que me tratan muy difícil mantenerse al día con el día a día las tareas de mantenimiento de la casa funcional y limpia. También trato de hacer frente a los otros proyectos que siguen sumando. Por lo general son los días que me empuje más allá de mis límites por lo que sé que si yo he tenido un día ocupado y un montón de proyectos realizados, puedo estar fuera de combate durante unos pocos días después. Los días que tengo un dolor extremo que son días que pasarán la mayor parte de ella en el sofá, en la cama o en la silla tratando de ponerse cómodo.
Estos son los días que la ropa, los platos, la limpieza de la casa y la cocina tendrá que esperar, o que necesitan ayuda. Es probable que también encontrará estos son los días que se derraman muchas lágrimas. Lágrimas de dolor, lágrimas de dolor, lágrimas de frustración y lágrimas de saber que estoy dejando que mi familia y yo abajo. Pero como he aprendido, ya sabes estas lágrimas y siempre está dispuesto a consolarme. Usted sabe que esto es uno de mis momentos más vulnerables y deja que me encargue de que lo mejor que pueda, incluso si eso significa que tengo que perder otra reunión familiar.
Estos tiempos / día de dolor que también pueden tener una gran cantidad de ansiedad y estrés. Pero por lo que he aprendido, no todo el estrés y la ansiedad se expresan de la misma manera o de manera típica que mucha gente piensa, principalmente la parte ansiedad. Para la mayoría de las personas cuando escuchan la ansiedad o ataques de ansiedad, se imaginan a la gente sentada en el rincón, acurrucado en una bola balanceándose hacia adelante y hacia atrás murmurando al mismo tiempo un montón de galimatías. Así, la ansiedad puede ser expresa o resultar de muchas maneras diferentes, la mayoría de los cuales algo que he aprendido de mí mismo. Para mí, las formas más comunes I demuestran la ansiedad son la ira y conseguir fácilmente alterado. Las cosas simples simplemente me hacen tan frustrado, molesto, mal humor y que no importa cuánto lo intente mantener la calma, recogido y agradable; Me acaban de morder a todos y todo lo que lleva a peleas, discusiones y malestar simplemente para todo el mundo. Por más que lo intento permanecer tranquilo y sereno, pequeñas cosas sólo parecen empujar los botones de mi y me hace tan molesto.
Por favor, sé que estoy tratando muy duro para dejar que estas cosas salen de la espalda y no me causan estrés o ansiedad, simplemente no lo puedo evitar la mayor parte del tiempo, sin embargo, y es porque físicamente estoy tan incómoda que a veces se tarda nada más que una mirada particular a conducir yo loco! Trato muy duro para no perder la cabeza y no dejar que las cosas me molestan, pero saben que a veces simplemente no puede seguir todo y es obligado a vomitar sobre el tiempo como el Monte Vesubio! También ha aprendido que cuando tenga conversaciones con usted, u otros, que a veces parece como si estuviera echando espuma por la boca con la conversación, hablando rápido ya veces no tiene mucho sentido, esto también es una manera de experimentar y expresar la ansiedad. Trato de tomar respiraciones profundas, mantener mis respuestas en conversaciones incluso, tranquilo y sereno, pero sí, a veces una simple conversación puede enviar mi ansiedad en picada.
No es la gente que estoy hablando necesariamente a que me están causando estrés o ansiedad, pero sólo el que conversan en general que puede enviar mi vuelo metros ansiedad. Cuando estoy en medio de esta ansiedad, la socialización puede ser muy difícil. A veces voy a tener que perder las reuniones familiares o fiestas debido al aumento de la ansiedad y el dolor, pero ten en cuenta que esto no es algo que hacer una elección deliberada al hacerlo. No quiero volver a sentirse marginado por mis síntomas o dejar que todo esto dictan mi vida, sin embargo, esto tiene un gran impacto en mi vida ahora y cómo lo vivo y sin embargo siempre parece saber cuando realmente necesito un “tiempo de espera ”para recoger y centrarme y la tranquilidad de todo el caos pasando en mi cabeza.
La fatiga es otro jugador importante en todo esto. La mejor descripción de la fatiga que tengo es que la fatiga que ninguna cantidad de sueño que he tenido ayudará. Esto es tan cierto. El dolor en sí mismo causa fatiga. Ahora agregue el estrés, la ansiedad, la depresión y el síndrome de fatiga crónica en la cima de todo eso, e incluso a veces tomando una ducha es la tarea más grande que puedo lograr toda la semana!
La fatiga crónica de la enfermedad se puede resumir como siendo tan cansado que se sentía como si no has dormido en más de una semana sin embargo, usted tiene que seguir todas las tareas que usualmente lo hace sobre una base regular. La fatiga por sí solo puede causar todos nuestros otros síntomas que puede experimentar en cuádruples lo que “normalmente” puede ser experimentado. A continuación, añadir el insomnio o los hábitos de sueño variadas de personas con enfermedades crónicas, esta es una receta para el sufrimiento. Sí, estamos cansados, literalmente, todo el tiempo. Cuando decimos que somos “cansada” no es sólo decir que tuvimos una mala noche de sueño, es decir que en algunos días estamos tan cansados que incluso la más pequeña tarea se agotará todas las reservas que tenemos. Y una vez más, usted parece saber cuando mi última “cuchara” ha sido objeto de dumping y que me animan a descansar.
El desempleo es ahora parte de nuestro vocabulario y la realidad también. Yo no ser capaz de contribuir a nuestro plan financiero también es ahora un gran problema en nuestras vidas. Hace que los dos estrés en mirar nuestro futuro. Las cosas ya no son tan accesibles como antes y las prioridades han cambiado. Sin embargo, con todo esto añadido a lo que nos ocupa, continúa para apoyarme y me aseguran que va a sobrevivir. Vamos a tener que decir que no a más cosas que decimos sí a pero vamos a hacer que funcione de alguna manera. Mis sueños futuros, las aspiraciones y la carrera han tenido que ser puesto en espera por lo que a veces, cuando eso se convierte en demasiado para mí de soportar, que me sostiene y me hizo saber que todavía debería estar orgulloso de lo que he logrado, pero me consuelo al saber que tal como lo veo, las cosas van a ser tan drásticamente diferente y no hay nada que pueda hacer para arreglar eso.
Me puede parecer que se quejan todo el tiempo sobre las cosas que me molestan, el dolor que tengo, la fatiga que se ha hecho cargo, pero aún así siguen aquí, sosteniendo mi mano, frotando mis hombros, animándome a seguir luchando. Cuando nosotros o un cónyuge y / o miembro de la familia tiene esta condición parece tener todo lo que tenemos para dar. Pero el apoyo a usted mi es el regalo más grande que tiene que ofrecer.
La paciencia es una virtud; la capacidad de la comodidad es un regalo, y comprensión, así como la empatía es verdaderamente una cosa rara. Sin embargo, por suerte para mí que tiene todas estas cosas. Y no importa lo que nuestra historia ha planeado por delante, su capacidad de comprender mi condición, ser paciente con mis limitaciones, y consolarme en mis momentos más oscuros me ha dado la capacidad de continuar a perseverar. Día a día, incluso hora a hora es la mejor que puedo hacer. Pero, sabiendo que la vida será diferente para nosotros y ser capaz de adaptarse a lo que tenemos ahora a ser el regalo más grande que me puede dar, y por favor continúe a ser paciente, la comprensión y el cuidado de lo que puede ser nuestra nueva realidad. Y, sobre todo, gracias por entender que este diagnóstico / condición legítima. Su amor y apoyo es lo que me mantiene en este mundo loco. Voy a seguir para hacer lo mejor que pueda, pero apreciamos su apoyo en esta empresa!.
Fibromialgia, olvidé las palabras que iba a decir, olvidé lo que iba a hacer, olvidé a dónde iba … Para aquellos que no entienden la fibromialgia
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