Comme nous le savons, la fibromyalgie s’accompagne d’une grande variété de symptômes. La quantité de symptômes peut varier considérablement d’une personne à l’autre. Je ne dirais pas qu’il y a un symptôme qui facilite la vie avec la fibromyalgie; Cependant, je pense que certains ne sont pas aussi difficiles que d’autres.
L’un des symptômes de la fibromyalgie que je trouve personnellement le plus difficile à vivre est le “fibro fibro”, également appelé “brouillard cérébral”: les problèmes de mémoire à court terme et le manque de capacité de concentration. Mon mari rit quand je dis:
“La communication a toujours été l’un de mes atouts!” Ceux qui me connaissent le mieux trouveraient l’humour dans cette déclaration également parce qu’ils savent à quel point j’aime parler! Je peux aussi voir l’humour de son point de vue, mais parfois cela me donne envie de pleurer.
La “fibro fibro” semble être au pire moment où mon niveau de douleur est élevé. J’ai du mal à trouver mes mots ou j’oublie ce que je dis au milieu de la phrase. Parfois, je bégaie, prononce des mots incorrects ou dis quelque chose qui sonne complètement hors sujet.
Je réponds aux gens avec des déclarations qui n’ont aucun sens. J’ai appris à écrire et à utiliser mon calendrier plus souvent que jamais. Dans mes meilleurs jours, j’essaie de rire de moi-même ou de rire avec ceux qui se moquent de mes paroles.
Dans mes pires jours, je pleure et pleure, me sentant comme si un morceau de moi avait disparu. Parfois, j’ai essayé d’exprimer cela aux autres et j’ai répondu avec “ça arrive à tout le monde” ou “je le fais aussi”. Ils ne comprennent tout simplement pas.
C’est plus que de temps en temps “je suis entré dans une pièce et j’ai oublié ce que je suis entré”. Tout comme la fatigue de la fibromyalgie est plus qu’une fatigue ou un épuisement général commun à la plupart des gens, le brouillard cérébral est un symptôme extrême que beaucoup je ne comprends pas.
L’écriture, la lecture et l’orthographe sont parfois difficiles, même si ce sont des choses qui étaient jadis faciles pour moi. Je relis constamment pour comprendre ce que je lis ou écris, ou épelle les mots puis les regarde parce qu’ils ne semblent pas être corrects – parfois ils le sont et parfois ils ne le sont pas. La concentration peut aussi être difficile. Si vous vous concentrez sur quelqu’un qui me parle ou ce que je fais, cela peut être une tâche extrêmement difficile. Parfois, j’ai envie d’apprendre à vivre avec la fibromyalgie, il faut pleurer la perte de leur vieil homme, qui change de nombreux aspects de leur vie.
Il est plus difficile pour moi de vivre avec l’autre symptôme de la fibromyalgie – que se passe-t-il lorsque je suis stressé et que je m’excuse physiquement – c’est la sensation de brûlure de ma peau? Certains décrivent comme une sensation que leur peau est brûlée par le soleil.
Je décris souvent cela comme un sentiment comme si j’étais dans un feu de maison. Avant que la fibromyalgie ne soit diagnostiquée, j’utilisais assez souvent le mot “ardeur” pour décrire ma douleur à mon mari. Il a toujours pensé que c’était un choix étrange de mots descriptifs pour décrire ma douleur.
Ce n’est qu’après mon diagnostic et mon investigation de la fibromyalgie que nous avons tous deux compris ce type de douleur et mon choix de mots.
Certains disent que le mot descriptif «brûlure» utilisé pour décrire la douleur est celui que seules les personnes atteintes de fibromyalgie comprennent. Je ne suis pas sûr que ce soit le cas, mais je sais que ce mot est couramment utilisé et que je vis avec le symptôme presque tous les jours.
Il y a tellement de déclencheurs de ce symptôme de fibromyalgie. Quelque chose d’aussi simple que de ne pas dormir suffisamment peut donner à mon corps le sentiment d’être ainsi. Je ne dirais pas que c’est juste ma peau qui brûle, mais plutôt comme si elle venait de l’intérieur. Une conversation dérangeante peut m’affecter pendant des jours, parfois davantage.
Je peux aussi être affecté par une odeur forte et accablante, par les aboiements excessifs de notre chiot ou par me frapper le coude. (Bien qu’un aboiement excessif de chiot puisse causer un symptôme indésirable, votre amour inconditionnel et votre compagnie en font un prix qui en vaut la peine.) J’ai appris à limiter le stress contrôlable de la vie qui peut le déclencher et à éliminer ma vie de qui la cause
Une activité physique excessive est le seul déclencheur de ce symptôme qui m’a été plus difficile à adapter car je ne me sens pas très bien, mais j’apprends petit à petit. Cela m’a appris à choisir quelles activités méritent la peine supplémentaire et lesquelles ne le sont pas. Parfois, je n’ai pas le choix et je dois juste gérer cela, mais quand je le fais, je choisis judicieusement.
Ces deux symptômes sont mes pires symptômes de la fibromyalgie, mis à part la douleur corporelle. Apprendre à vivre avec eux a été un défi, c’est le moins qu’on puisse dire, mais je fais de mon mieux et c’est ce qui compte. Réveillez-vous, souriez et mettez un pied devant l’autre – des câlins souples, mes compagnons guerriers de la fibromyalgie. Reste fort!
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