Pourquoi je ne souhaite plus de santé parfaite dans ma vie avec la fibromyalgie

De: Lizo Wilkinson

Je ne me souviens pas de la dernière fois où j’ai souhaité autre chose que «ma santé». Vous voyez, j’ai eu des problèmes de santé et la dernière chose que je voulais était de les avoir à nouveau.

Mais cette année, je n’ai pas souhaité ma santé. C’est l’année où j’ai développé une maladie chronique. Une minute j’allais bien, la minute suivante, j’ai ressenti une douleur au cou intense. Au cours des prochaines semaines, il s’est propagé à tout mon corps. Mon médecin n’avait aucune idée de ce qui se passait. Aucun des médecins de la pratique n’a fait.

Après beaucoup de persévérance, j’ai obtenu un rendez-vous du National Health Service (NHS) avec l’unité de la colonne vertébrale. Leur verdict? Tout va bien. Ce qui était bon, à certains égards. D’une autre manière, c’était un peu “Oh. Eh bien, qu’est-ce que je fais maintenant? “Moment. Cela faisait trois mois maintenant, donc ça pourrait définitivement être classé comme une douleur chronique.

Ce n’est que lorsque je faisais des recherches sur l’état de quelqu’un d’autre que j’ai soudainement eu une idée de ce que c’était. Un de mes adeptes de Twitter a la fibromyalgie, et quand j’ai regardé pour voir ce que c’était, j’ai soudain eu une révélation. Ce sont mes symptômes. Je n’ai pas encore reçu de diagnostic, car les listes d’attente du NHS durent normalement huit mois.

Donc je suis allé sur Internet. Je suis reconnaissant à un blogueur nommé Sam Cleasby qui a publié des informations sur la vie avec un handicap invisible. J’ai également trouvé beaucoup d’informations spécifiques à la fibromyalgie sur le site de Julie Ryan Counting My Spoons. J’ai lu tellement de récits sur les expériences de fibromyalgie des gens, comme cela prend une éternité à diagnostiquer et les médecins plus âgés n’en ont peut-être jamais entendu parler.

J’ai également lu de nombreux articles sur le handicap sur ce site et j’ai trouvé ces comptes extrêmement utiles. Plus je lisais, plus je rassemblais d’informations sur la façon de vivre avec un problème de santé chronique. Il m’arrive de suivre les cuillères sur Twitter, alors je leur ai demandé conseil et aide. Cela aussi a été inestimable. Comme je l’ai lu au cours de l’une de mes nombreuses séances de recherche sur la condition et le handicap chroniques, les seules personnes qui peuvent vraiment comprendre la santé chronique sont les personnes qui sont chroniquement malades et handicapées.

Il m’a fallu une année entière pour accepter ma situation. Il y a eu beaucoup de moments sombres, et il y en aura beaucoup d’autres, mais comme tous les «guerriers de la fibromyalgie», j’ai appris que je suis une personne forte qui est capable de faire face à ma nouvelle situation ou à n’importe quelle situation. J’ai appris à ne pas me sentir mal si je devais passer la journée à regarder la télévision. Il y a des jours où je peux faire des choses presque comme je le faisais, et certains jours je ne peux pas.

Plus important encore, j’ai appris que la santé parfaite n’est pas l’alpha et l’oméga. Vous pouvez vivre une bonne vie avec une santé médiocre ou même mauvaise. Et c’est la raison pour laquelle je n’ai pas souhaité ma santé. J’ai appris à faire face à ma santé variée.

Je dirais aux autres dans ma situation de rester fort. Les rendez-vous chez le médecin ne sont pas faciles à obtenir au Royaume-Uni, mon soutien principal, mes conseils et mes informations provenaient presque entièrement d’Internet. Si vous n’avez pas de support local, Internet a tout un monde d’informations. N’oubliez pas d’être très prudent en l’utilisant, car c’est un monde d’informations et aussi un monde de désinformation.

Comme nous les fans de “Supernatural” se disent les uns aux autres, continuez à vous battre – pour que les professionnels de la santé vous écoutent, pour que les gens comprennent et trouvent des réponses ou un diagnostic.

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