Comment décrire la fibromyalgie pour les personnes qui ne l’ont jamais ressentie

Avez-vous déjà eu envie de ressentir ce que c’est que d’avoir la fibromyalgie? N’est-ce pas? Pas moi non plus. Mais j’ai très bien connu les détails (certainement mieux que ce que j’ai toujours voulu) et je devrais être en mesure de vous familiariser avec suffisamment d’expériences pour pouvoir mieux comprendre une personne de votre vie susceptible de souffrir d’une maladie chronique, de la douleur ou d’autres problèmes de santé. Alors respirez profondément et préparez-vous à essayer quelque chose de nouveau. Un voyage à travers mes yeux, si vous voulez.

Rappelez-vous la dernière très grave brûlure que vous avez eue – celle qui vous fait remarquer chaque pouce de votre peau? Il y avait des démangeaisons, il était serré et chaud. Laisse-toi sentir maintenant. Imagine que la sensibilité est étroite et que la perception hésitante de chaque contact se répande sur ta peau. Vous pouvez maintenant sentir les coutures de vos vêtements et même savoir où vos doigts se touchent et les plis de votre peau sur vos coudes et vos genoux. Le col de sa chemise est serré et la taille de son pantalon est serrée. inconfortable, claustrophobe.

Mais le toucher n’est pas le seul sens qui augmente. Les sons commencent à devenir plus forts qu’ils ne paraissent absolument nécessaires et souvent déplaisants. Lorsque vous conduisez, les lumières peuvent sembler très lumineuses et parfois briller de manière inattendue. Vous devez conduire beaucoup plus prudemment la nuit – les phares semblent soudainement vous échapper, parfois. Les odeurs sont trop fortes et les odeurs autrefois agréables, ou les aliments que vous trouvez savoureux ou simplement indifférents, sont maintenant ignobles et parfois tout à fait inattendus.

Avez-vous déjà eu la grippe? Ce type saisonnier de saison qui vous rend si douloureux que même après avoir pris quatre Motrin, vous pouvez encore sentir tout votre squelette? Si vous avez une référence utile. Sinon, soyez heureux et continuez à vous faire vacciner contre la grippe! Imaginez-vous vous réveiller un jour avec ce sentiment douloureux, mais il est terriblement pire que d’habitude. Vous vous plaignez, pensez: “Eh bien, le vaccin contre la grippe n’a pas fonctionné”, et soupira, espérant qu’elle disparaîtrait au bout d’une semaine, comme la dernière fois. Après seulement deux semaines, trois ans, vous commencez à vous inquiéter. Et puis, ça empire, ça commence à rendre vos membres lourds, fatigués. Semblable à la sensation de marcher dans le sable, vous pouvez oublier quelques jours que vous n’avez pas l’énergie que vous avez utilisée et en abuser, seulement pour payer la dette énergétique pendant deux ou trois jours au lit. Ces jours-ci et quelques jours au hasard, sans raison prévisible, à part le sens de l’humour cruel du destin, vous ne pouvez que vous réveiller avec l’énergie de sortir du lit, de vous habiller et de manger.

Le partenaire de la fatigue et de la douleur chroniques s’appelle “brouillard cérébral”, ce qui semble idiot. Ce n’est pas. Cela peut vous rendre stupide et gêné, et essayer de le cacher et de rire comme si de rien n’était. Mais vos clés peuvent se retrouver dans le congélateur, le lait dans les placards et vous vous retrouvez dans une pièce quelconque de votre maison, regardant le mur et vous demandant: “Que ferais-je maintenant?” Quatre fois par jour. Le shopping est une blague, même si c’est beaucoup plus … fantaisiste maintenant. Vous touchez tous les tissus des vêtements pour voir s’ils sont assez doux et dites à votre femme: “Oooh, sens cette serviette!”. Ne vous inquiétez pas, ils s’y habitueront. Mon mari doit me rappeler ce que je cherchais chaque fois que je suis distrait par ces jolis autocollants ou serviettes … Une cible est un endroit dangereux.

Mais, croyez-le ou non, tout cela, jusque dans les moindres détails, est dérisoire par rapport à la douleur. Il deviendra votre meilleur ami, votre nouveau compagnon constant. Certains jours, cela est tolérable et rend seulement les choses un peu plus lumineuses et les coins des yeux un peu plus serrés. Cela vous met vite en colère, mais vous avez un bon contrôle sur les choses (mais ne demandez pas à votre mari ce qu’il en pense). D’autres jours, eh bien … ces jours où nous n’aimons pas trop penser. Certains d’entre eux seront consacrés à la recherche de distractions telles que des livres et des films. Vous connaissez probablement les cinémas avec des sièges confortables, car ceux qui sont inconfortables sont ceux que vous ne pouvez plus aller. Les autres jours, les mauvais, vous pouvez prétendre que cela n’existe pas.

Je sais que j’ai brossé un tableau très sombre ici, et que vous pouvez croire qu’il est exagéré. Que vous le fassiez ou non a probablement beaucoup à voir avec si vous avez eu l’expérience de la douleur chronique ou quelqu’un qui a. Mais je vais vous dire autre chose que vous pouvez croire ou non, et c’est ce que je remercie pour ma fibro. Il m’a appris plus sur moi et sur la vie que tout ce que j’ai jamais vécu.

Je ne savais jamais à quel point les cheveux de Yorkie étaient mous avant, ni quelle serait l’odeur de la pluie après le brouillard. Je ne pouvais pas aussi profiter de la musique de pluie sur le toit quand j’ai fermé les yeux après une longue journée. Il y a un équilibre à trouver dans la douleur, pour moi, quand je cherche.

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