La partie de la vie avec la fibromyalgie que je ne vous ai pas dite

Je suis une personne assez ouverte quand il s’agit de maladies physiques et mentales, mais je peux aussi être très réservée, surtout à propos de ma douleur chronique et de ma fatigue. Ce n’est pas parce que je ne veux pas partager ce qui se passe avec moi, mais parce que je ne veux pas que les gens pensent que je suis un «pleurnichard» ou un «chercheur d’attention». Je ne suis pas une de ces choses. En fait, je suis le contraire.

Beaucoup de gens savent que j’ai la fibromyalgie. Ce qu’ils ne savent pas, c’est la réalité de ce que je traite. Ils voient une jeune femme positive, stupide, de 25 ans à l’étranger, mais ils ne se rendent pas compte à quel point je ressens de la douleur ou à quel point mon angoisse me touche. Je ne pense pas que les gens comprennent vraiment l’intensité de mes conditions. J’admettrai qu’une partie de ceci est de ma faute, pour ne montrer que les bonnes parties de ma vie dans les réseaux sociaux, mais montrer les parties pas si bonnes peut parfois sembler être une recherche d’attention. Je ne veux pas d’attention, je veux que mes conditions cessent d’être stigmatisées. Je ne veux pas de pitié, je veux que les gens comprennent ces maladies.

Voici la réalité de quelqu’un avec la fibromyalgie:

1. Douleur

Quand vous dites à quelqu’un que vous souffrez, ils ne le prennent pas vraiment très au sérieux. Habituellement, ils pensent que vous avez un mal de tête ou un mal de dos typique. Ils ne se rendent pas compte que tout leur corps éprouve de la douleur, des coups de couteau, des aiguilles, un engourdissement ou, souvent, une sensation de brûlure. Ils ne réalisent pas non plus que les vêtements qu’ils portent ou la chaise en tissu sur laquelle ils sont assis peuvent aussi causer de la douleur. Les personnes atteintes de fibromyalgie sont sensibles à certains tissus et matériaux. Certains d’entre nous (y compris moi-même) ressentons de la douleur dans leurs organes. J’ai eu des douleurs ovariennes pendant des années, et je ne savais pas ce que c’était jusqu’à ce que je reçoive un diagnostic de fibromyalgie.

Notre douleur est souvent insupportable et peut causer des difficultés dans les situations quotidiennes. Quand je traverse des flambées graves, parfois je suis en retard au travail. Il semble que peu importe si tôt je me lève, il me faut 30 minutes à une heure pour sortir du lit parce que mon corps est raide, mes hanches sont bloquées et mes mains sont douloureuses. Porter un panier d’épicerie peut rendre mes mains et mes coudes tendus, il est parfois impossible d’ouvrir les pots, les tâches ménagères peuvent tout enlever et la liste pourrait continuer.

2. Fatigue

Parlant d’être en retard au travail, la fatigue est une autre raison pour laquelle il est si difficile de sortir du lit. J’aurais pu avoir le meilleur rêve de ma vie, mais j’ai l’impression de ne pas avoir dormi d’un œil. Pour moi, la fatigue chronique est l’un des symptômes les plus difficiles. Il y a eu des jours où je suis nerveux à conduire de longues distances parce que le soleil cause une très mauvaise fatigue. Je travaille à un bureau, mais à midi, j’ai l’impression d’avoir travaillé dur, et tout ce que je veux faire, c’est rentrer à la maison et m’asseoir sur le canapé. Et bonne chance en essayant de planifier quelque chose avec moi après le travail. Je serai trop épuisé pour faire quoi que ce soit. Si vous pouvez le faire sortir avec vous en semaine, c’est probablement parce que peu importe comment je suis fatigué, j’ai vraiment besoin de votre entreprise.

3. Brouillard cérébral

C’est le dernier symptôme que je vais toucher. Le brouillard cérébral est une chienne pour dire le moins. Oubliant complètement une conversation qu’il avait eue hier, il avait dû faire une pause d’une demi-phrase parce qu’il avait oublié ce qu’il disait ou avait complètement arrêté une conversation parce qu’il ne pouvait pas penser aux bons mots à utiliser. C’est le symptôme le plus embarrassant de la fibromyalgie. Se sentir incompétent est incroyablement frustrant et déchirant. Je me demande souvent si les gens me jugent pour cela. Parfois, je ne peux pas me rappeler comment un mot est épelé quand j’écris. J’ai vérifié mes messages texte, mes courriels et mes publications sur les réseaux sociaux à plusieurs reprises avant d’appuyer sur le bouton «envoyer» ou «envoyer». La honte du brouillard cérébral me cause tellement d’anxiété.

Voici quelques autres choses communes pour profiter des guerriers guerriers:

1. Maladie mentale qui comprend, sans s’y limiter, la dépression et l’anxiété.

2. Sensible à la température. Les étés, et surtout les hivers sont souvent insupportables.

3. Syndrome du côlon irritable (IBS).

4. Sueurs nocturnes / flashs chauds et froids.

5. Insomnie.

6. Cycles menstruels douloureux et irréguliers.

7. Problèmes d’équilibre.

8. Acouphène (bourdonnement dans les oreilles).

9. Syndrome des jambes sans repos.

10. Eruptions et troubles cutanés.

Il est très fréquent que les personnes atteintes de fibromyalgie aient des symptômes différents des autres. Tous les symptômes sont différents pour tout le monde, il est donc difficile d’expliquer aux médecins quels sont leurs symptômes. Les patients atteints de maladies chroniques semblent connaître leur maladie plus que les professionnels, ce qui peut être difficile lorsqu’il s’agit de médicaments et de traitements. Nous sommes tous dans le même bateau et nous avons besoin de soutien et de compréhension de la part des personnes et des êtres chers dans nos vies.

J’espère que cela éclaire un peu cette terrible maladie. Si vous connaissez quelqu’un qui vit avec la fibromyalgie, donnez-lui un câlin (gentil) et demandez-lui ce que vous pouvez faire pour l’aider. Juste être là pour écouter pourrait signifier le monde!

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