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Eh bien, ici nous sommes, non seulement la vie, comme je l’ai changée, malheureusement, a la vôtre! Nous sommes maintenant sur un nouveau voyage, pas amusant, pas excitant, mais plus d’un voyage d’escalade avec de nombreux arrêts de fosse et des détours à venir. Donc, voici quelques éléments que vous devriez connaître dans ce voyage qui peut vous faciliter la tâche. Comme vous le savez, j’ai une maladie chronique et la vie ne sera jamais la même pour l’un d’entre nous. Ce n’est pas une maladie que vous pouvez voir, mais vous me voyez en difficulté. Ce n’est pas une maladie que vous pouvez ressentir, mais vous voyez ma douleur. Ce n’est pas une maladie que vous comprenez, mais vous voyez ma frustration. Les choses ne seront jamais les mêmes, mais je peux essayer de les garder aussi «normaux» que possible pour le bien de notre famille. Alors, comment expliquez-vous pleinement les défis qui nous attendent? Il existe de nombreux aspects de la maladie / de la douleur chroniques que je veux que vous compreniez, nous allons commencer au début et je vais vous expliquer le mieux possible afin que vous puissiez comprendre et comprendre ce que sera ce voyage. Il y a beaucoup de domaines différents à couvrir, alors assurez-vous, ce sera un trajet accidenté.
Alors, qu’est-ce que cette chose appelle la fibromyalgie? Eh bien, il y a tellement de théories et de définitions de ce que c’est qu’elles s’harmonisent toutes et certaines définitions semblent totalement confuses et ne donnent pas de sens alors que d’autres font ressentir comme une multitude de symptômes sans sens réel ni diagnostic défini. Il doit être tout dans nos têtes, mais laissez-lui un nom de toute façon. Tout d’abord, j’ai cette «condition» qui affecte la façon dont mon corps répond à la douleur. La partie «amusante», tous les jours, pourrait être différente, donc je peux avoir de la douleur dans mes articulations un jour, et des douleurs de tir dans mes jambes un autre jour. Commençons par la douleur.
Ma douleur peut varier de l’extrême à l’extrême d’une journée à l’autre et même d’une heure à l’autre. Parfois, il est peut-être difficile pour moi de vous dire exactement ce qui fait mal et comment il fait mal, mais il suffit de savoir que c’est très mal à l’aise et ça fait mal. Les «ennuyeux» jours sont ceux que j’essaie de garder au courant des tâches quotidiennes de garder la maison fonctionnelle et propre. J’essaie également d’aborder les autres projets qui continuent à s’ajouter. Ce sont généralement les jours où je me dépasse au-delà de mes limites afin de savoir si j’avais passé une journée bien remplie et beaucoup de projets, je pourrais être débités pour quelques jours plus tard. Les jours où j’ai de la peine extrême, ce sont des jours où je vais passer la majeure partie sur le canapé, au lit ou dans la chaise essayant de me sentir à l’aise.
Ce sont les jours où la lessive, la vaisselle, le nettoyage de la maison et la cuisine devront attendre, ou j’aurai besoin d’aide. Vous trouverez probablement probablement que ce sont les jours où de nombreuses larmes sont perdues. Des larmes de douleur, des larmes de chagrin, des larmes de frustration et des larmes de savoir que je me laisse tomber et ma famille. Mais comme je l’ai appris, vous connaissez ces larmes et êtes toujours disposé à me réconforter. Vous savez que c’est l’un de mes moments les plus vulnérables et que vous me permettez de régler le mieux possible, même si cela signifie que je dois manquer une autre famille qui se réunit.
Ces temps / jours de douleur, je peux aussi avoir beaucoup d’anxiété et de stress. Mais d’après ce que j’ai appris, tout le stress et l’anxiété ne sont pas exprimés de la même manière ou de la façon typique dont beaucoup pensent, principalement la partie anxieuse. Pour la plupart des gens quand ils entendent de l’anxiété ou des attaques d’anxiété, ils imaginent les personnes assises dans un coin, se recroquevillent dans une balle qui se balancent en avant et en arrière en marmonnant un tas de gibber. Eh bien, l’anxiété peut être exprimée ou démontrée de plusieurs manières différentes, la plupart desquelles je viens d’apprendre moi-même. Pour moi, les façons les plus courantes de démontrer l’anxiété sont la colère et se fâchent facilement. Les choses simples me rendent tellement frustré, contrarié et craqué que peu importe combien je tente d’être calme, rassemblé et agréable; Je finis par accrocher à tout le monde et à tout ce qui mène à des combats, des arguments et tout simplement un malaise pour tous. Aussi difficile que j’essaie de rester calme et rassemblé, les petites choses semblent pousser mes boutons et me rendre tellement bouleversé.
Je sais que j’essaie tellement fort de laisser ces choses rouler sur mon dos et de ne pas me faire du stress ou de l’anxiété, je ne peux tout simplement pas l’aider la plupart du temps et c’est parce que physiquement je suis tellement mal à l’aise que parfois il faut Rien de plus qu’un regard particulier pour me rendre fou! J’essaie tellement de le garder ensemble et ne pas laisser les choses me déranger, mais je sais que parfois je ne peux tout simplement pas garder tout cela et il est nécessaire de vomir comme le Mont Vésuve! Vous avez également appris que lorsque j’ai des conversations avec vous, ou d’autres personnes, il semble parfois que je mousse à la bouche avec une conversation, que je parle rapidement et qui n’a pas beaucoup de sens, c’est aussi une façon d’exprimer et d’exprimer l’anxiété. J’essaie de respirer profondément, de garder mes réponses dans des conversations même, calmes et rassemblées, mais oui, parfois une conversation simple peut envoyer mon anxiété dans une queue de queue.
Ce ne sont pas les gens avec qui je parle nécessairement qui me causent du stress ou de l’anxiété, mais simplement la conversation en général qui peut envoyer mon compteur d’anxiété volant. Quand je suis au milieu de cette anxiété, la socialisation peut être très difficile. Parfois, je vais devoir manquer des rassemblements ou des fêtes familiales en raison d’une anxiété et d’une douleur accrues, mais je sais que ce n’est pas quelque chose que je fais un choix délibéré. Je ne veux jamais me sentir à l’écart de mes symptômes ou laisser tout cela dicter ma vie, cependant, cela a un impact énorme sur ma vie maintenant et comment je le vis et pourtant, vous semblez toujours savoir quand j’ai vraiment besoin d’un “time-out” “De me rassembler et de me centrer sur moi-même et de calmer tout le chaos dans ma tête.
La fatigue est l’autre acteur majeur de tout cela. La meilleure description de la fatigue que j’ai est que c’est une fatigue qui ne vous aidera jamais. C’est tellement vrai. La douleur en soi provoque de la fatigue. Ajoutez maintenant le stress, l’anxiété, la dépression et le syndrome de fatigue chronique en plus de cela et parfois même prendre une douche, c’est la plus grande tâche que je pourrais accomplir toute la semaine!
La fatigue causée par une maladie chronique peut être résumée comme étant si fatiguée que vous avez senti que vous n’avez pas dormi dans plus d’une semaine, mais vous devez continuer toutes les tâches que vous faites habituellement sur une base régulière. La fatigue seule peut causer tous les autres symptômes à expérimenter en quadruple ce qu’il «normalement» peut être connu. Ensuite, ajoutez l’insomnie ou les habitudes de sommeil variées de ceux qui ont une maladie chronique, c’est une recette pour la souffrance. Oui, nous sommes fatigués littéralement tout le temps. Lorsque nous disons que nous sommes “fatigués”, ce n’est pas seulement en disant que nous avons passé une mauvaise nuit à dormir, c’est que certains jours, nous sommes tellement fatigués que même la plus petite tâche permettra d’éliminer toutes les réserves que nous avons. Et encore une fois, vous semblez savoir quand ma dernière «cuillère» a été déversée et vous m’encouragez à vous reposer.
Le chômage fait maintenant partie de notre vocabulaire et de notre réalité. Je ne peux pas contribuer à notre plan financier est aussi un problème majeur dans nos vies. Cela nous oblige à nous insister sur notre avenir. Les choses ne sont plus aussi accessibles qu’elles l’étaient et les priorités ont changé. Pourtant, avec tout cela ajouté à ce dont nous traitons, vous continuez à me soutenir et à me rassurer que nous survivrons. Nous devrons dire non à plus de choses que nous disons oui, mais nous allons le faire fonctionner de quelque façon. Mes rêves futurs, mes aspirations et ma carrière ont dû être mis en attente, alors parfois, quand cela devient trop important pour moi, vous me tenez et faites-moi savoir que je devrais toujours être fier de ce que j’ai accompli mais me réconforter en sachant que Comme je le vois, les choses seront si drastiquement différentes et il n’y a rien que je puisse faire pour résoudre cela.
Je peux me plaindre tout le temps de ce qui me dérange, de la douleur que j’ai, de la fatigue qui a repris, mais vous êtes encore là, en tenant ma main, en me frottant les épaules, en m’incitant à continuer à vous battre. Lorsque nous, ou un conjoint et / ou un membre de la famille, avons cette condition, cela semble prendre tout ce que nous devons donner. Mais vous me soutenant est le meilleur cadeau que vous avez à offrir.
La patience est une vertue; La capacité de se réconforter est un cadeau, et la compréhension ainsi que l’empathie est vraiment une chose rare. Cependant, heureusement pour moi, vous avez toutes ces choses. Et peu importe ce que notre histoire a prévu, votre capacité à comprendre mon état, soyez patient avec mes limites et me réconforter dans mes moments les plus sombres m’a permis de continuer à persévérer. De jour en jour, même heure par heure, c’est le meilleur que je peux faire. Mais vous, sachant que la vie sera différente pour nous et que nous pouvons nous adapter à ce que nous avons maintenant, ce sera le plus grand cadeau que vous pouvez me donner, et continuez à être patient, compréhensif et attentif à ce que notre nouvelle réalité peut être. Et surtout, merci de comprendre que c’est un diagnostic / condition légitime. Votre amour et votre soutien est ce qui m’empêche de vivre dans ce monde folle. Je continuerai à faire de mon mieux, mais j’apprécierai votre soutien dans cette entreprise!
Cliquez ici pour lire: Une réponse d’époux à la lettre de l’épouse qui a la fibromyalgie
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