Une lettre ouverte à mes amis et à ma famille:
Il est difficile d’expliquer la fibromyalgie, l’arthrose et les maladies chroniques. C’est plus qu’une douleur constante – c’est l’épuisement, le manque d’énergie et une multitude d’autres symptômes qui rendent le fonctionnement de chaque jour très difficile. Certains jours sont meilleurs que d’autres, et puis j’ai tendance à faire trop de choses pour les faire.
C’est comme si tout était amplifié – la température, les odeurs, les sons, la sensibilité aux lumières vives ainsi que la douleur. Juste tout.
La chose est, peu importe comment j’essaie, quand le réservoir est vide, il n’y a pas de réserves et les niveaux de tolérance deviennent zilch. Je dois épuiser l’énergie que j’ai, et c’est une jonglerie et bien souvent je dois payer pour plus tard. J’ai tendance à préférer être seul parce que l’interaction sociale est devenue ardue.
Certains des symptômes que je ressens sont:
- Douleur généralisée
- Rigidité
- Douleur articulaire
- Maux de tête
- Diarrhée, maux d’estomac, problèmes digestifs
- Énergie limitée
- Insomnie
- Épuisement
- Dépression
- Anxiété
- La nausée
- Brouillard de cerveau
- Difficulté de concentration
- Difficulté à parler, à sortir les mots justes, à trébucher sur eux
- Fluctuations de la vue
- Problèmes d’équilibre
- Sinusite chronique
- Engourdissement et picotements dans les mains et les pieds
- Gonflement du visage, des mains et des pieds
- Palpitations
Je fais de mon mieux. Certaines personnes ne comprennent pas la maladie. J’ai décidé de parler haut et fort au lieu de dissimuler ce que je ressens et de faire ce que je dois faire pour me permettre de vivre et de faire face au mieux possible. Cela comprend la réduction des facteurs de stress, ne pas faire ce que je ne peux pas faire confortablement et ainsi de suite.
J’ai l’impression que certaines personnes sont d’avis que cela ne peut pas être si mauvais. Bien sûr, je suis conscient que la plupart des gens ne sont pas capables de comprendre complètement quelque chose à moins que ça ne leur arrive, mais laissez-moi vous dire, ce n’est pas si grave … c’est bien pire.
Je me bats tous les jours, alors s’il vous plait éliminez les attentes, acceptez que je ne peux pas faire certaines choses, respectez les limites et ne prenez pas les choses personnellement. Je sais que c’est difficile pour quelqu’un qui peut facilement nettoyer la douche ou les toilettes, par exemple, pour comprendre à quoi cela ressemble lorsque les tâches quotidiennes prennent des proportions gigantesques.
Si vous voulez aider, demandez-moi – ne supposez pas que vous savez ce qui est le mieux pour moi. Les choses ne sont pas toujours comme elles apparaissent. Je regarde probablement très bien. Essayez de ne pas juger à moins de marcher dans mes chaussures. Je ne veux pas de sympathie, j’ai juste besoin que tu essayes de comprendre.
Je fais de mon mieux.
J’apprends que je dois faire ce qui est bon pour moi, pas ce qui est le mieux pour tout le monde, et si cela vous offense ou piétine vos sensibilités, je suis désolé. Je suis passé en faisant attention à ne pas déranger quelqu’un ou blesser leurs sentiments. Je suis trop fatigué pour tout ça. J’apprends à dire “non” plus souvent.
Tony sait et comprend. Il m’a trop souvent vu ces derniers temps quand la douleur est si forte que je suis hors de moi et que les larmes tombent en conséquence parce qu’il n’y a rien d’autre pour cela.
Si vous n’êtes toujours pas convaincu, parlez avec mon médecin – elle vous mettra en règle
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