Si vous aimez quelqu’un avec la fibromyalgie, vous saurez que nous souffrons de douleurs intenses qui varient d’un jour à l’autre et d’une heure à l’autre.

Nous ne pouvons pas prédire cela. C’est pourquoi nous voulons que vous compreniez que nous devons parfois annuler les choses au dernier moment et cela nous dérange autant que vous.
Nous voulons que vous sachiez que nous devons apprendre à accepter notre corps avec ses limites, et ce n’est pas facile. Il n’y a pas de remède pour la fibromyalgie, mais nous essayons de soulager les symptômes tous les jours. Nous ne demandons pas de souffrir de cela.
Plusieurs fois, nous nous sentons dépassés et ne pouvons pas faire face à plus de tensions que nous. Si possible, n’ajoutez pas plus de tensions à mon corps.
Même si nous sommes beaux, nous ne nous sentons pas bien. Nous avons appris à vivre avec une douleur constante la plupart du temps. Lorsque vous nous voyez heureux, cela ne signifie pas nécessairement que nous n’avons pas de douleur, simplement que nous avons affaire à cela. Certaines personnes pensent que nous ne pouvons pas être si mauvais si nous avons l’air bien. La douleur n’est pas vue. C’est une maladie chronique “invisible” et il n’est pas facile pour nous de l’avoir.

Comprenez, s’il vous plaît, que parce que nous ne pouvons pas travailler comme avant, ce n’est pas que nous sommes paresseux. Notre fatigue et notre douleur sont imprévisibles et pour cette raison nous devons faire des ajustements dans notre style de vie. Quelque chose qui semble simple et facile à faire n’est pas pour nous, et peut nous causer beaucoup de fatigue et de douleur. Pas nécessairement ce que nous avons fait hier, nous pouvons le faire aujourd’hui, mais cela ne veut pas dire que nous ne pourrons plus le faire.

Parfois, nous sommes déprimés. Qui ne serait pas déprimé avec une douleur forte et constante? Il a été constaté que la dépression se produit avec la même fréquence dans la fibromyalgie que dans toute autre condition de la douleur chronique. Cela ne nous fait pas mal d’être déprimé, mais nous sommes déprimés par la douleur et l’incapacité de faire ce que nous avions l’habitude de faire. Nous nous sentons également mal quand il n’y a pas de soutien et de compréhension de la part des médecins, de la famille et des amis. S’il te plaît, comprends-moi, avec ton soutien et aide-moi à diminuer ma douleur.

Même si nous avons dormi toute la nuit, nous ne nous sommes pas reposés assez. Les personnes atteintes de fibromyalgie ont un sommeil de mauvaise qualité, ce qui aggrave la douleur les jours où elles dorment mal.
Pour nous, il n’est pas facile de rester dans la même position (même si vous êtes assis) pendant longtemps. Cela nous cause beaucoup de douleur et il faut du temps pour récupérer. Pour cette raison, nous n’allons pas à certaines activités que nous savons que ce facteur nous nuirait. Parfois nous y allons bien que nous connaissions les conséquences que cela entraînera.

Nous ne devenons pas fous si nous oublions parfois des choses simples, ce que nous disions, le nom de quelqu’un ou nous disons le mauvais mot. Ce sont des problèmes cognitifs qui font partie de la fibromyalgie surtout les jours où nous avons beaucoup de douleur. C’est quelque chose d’étrange à la fois pour vous et moi. Mais rions ensemble et aidons-nous à maintenir notre sens de l’humour.

La plupart des personnes atteintes de fibromyalgie sont mieux conscientes de cette maladie que certains médecins et d’autres parce que nous avons été obligés de nous éduquer à comprendre notre corps. Donc, s’il vous plaît, si vous allez suggérer un “remède” pour moi, ne le faites pas. Ce n’est pas parce que je n’apprécie pas votre aide ou que je ne veux pas m’améliorer, mais parce que je me tiens bien informé et que j’ai déjà essayé beaucoup de choses.

Nous nous sentons très heureux quand nous avons une journée avec peu ou pas de douleur, quand nous réussissons à bien dormir, quand nous faisons quelque chose que nous n’avons pas réalisé il y a longtemps, quand ils nous comprennent.

Nous apprécions vraiment tout ce que vous avez fait et peut faire pour moi; y compris votre effort pour m’informer et me comprendre. Les petites choses signifient beaucoup pour moi et j’ai besoin de toi pour m’aider.

Soyez gentil et patient. Rappelez-vous qu’à l’intérieur de ce corps, endoloris et fatigué, je suis toujours là. J’essaie d’apprendre à vivre jour après jour, avec mes nouvelles limites et à garder espoir demain. Aidez-moi à rire et à voir les merveilleuses choses que Dieu nous donne.

Merci d’avoir lu ceci et de consacrer votre temps. Peut-être qu’à partir de maintenant tu peux mieux me comprendre. J’apprécie vraiment votre intérêt et votre soutien. “

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