SEP

perdre pied

5 février 2018
27 janvier 1999 : j’ai des vertiges après les repas. Le lendemain matin, j’ai l’impression d’être saoule, j’ai la tête qui tourne. Le 5 février, je ressens de forts maux de tête et je vois trouble de l’œil gauche; j’ai comme une tâche devant. Ma vision est brouillée. Mes repères sont altérés, je dois faire attention quand je me déplace. Le 11 février, j’ai rendez-vous chez l’ophtalmologue. Je ne vois presque plus de mon œil gauche. Le 12 février, je vois mon neurologue. Il me fait hospitaliser.

Je passe trois jours à la clinique pour recevoir trois perfusions de cortisone et faire une ponction lombaire. J’ai interdiction de bouger les 24 heures suivant la ponction. La nuit du 16 au 17, j’appelle une infirmière car j’ai mal à la tête et au dos et je n’arrive pas à dormir. Une cuisinière arrive au bout d’un certain temps, me demande ce qu’il y a, puis va chercher une infirmière. la cuisinière revient cinq minutes plus tard et m’engueule, elle croyait que j’avais appuyé sur la sonnette une seconde fois.
“Ooh mais il n’y a pas que vous ici, je n’ai même pas eu le temps de prévenir l’infirmière!”
Puis, l’infirmière arrive, me donne un comprimé pour la douleur et m’engueule : “Vous avez fait une ponction lombaire ce matin? Et vous vous étonnez d’avoir mal??? nianianianianiaaa…” elle a continué à m’aboyer dessus parcequ’il ne fallait pas que je bouge. “Et faut pas pleurer comme un bébé, à 17 ans, on est grande”
Sympa ici! Je me sens mal, si mal. J’ai juste demandé du paracétamol. Je pleure et ne parviens à dormir. Ma voisine de chambre l’a entendu et a tenté de me consoler un peu. Elle était gentille.

Le lendemain, une infirmière stagiaire arrive dans la chambre avec un questionnaire et le lit à la lettre sans tact, compassion ni bienveillance.
“alors, vous êtes là pour savoir si vous avez une sclérose en plaques? Vous savez ce que c’est? On vous a déjà expliqué? Ca vous fait quoi? etc.”
J’avais envie de lui dire qu’elle se taise et qu’elle parte, que ça me faisait affreusement peur et que je voulais que personne ne m’en parle! J’ai très peur, je suis tellement tétanisée que je ne parviens à répondre à aucune question. J’ai l’impression qu’on me parle en langue étrangère et qu’il va me falloir du temps, énormément de temps. J’ai envie d’écouter de la musique douce et de me laisser porter. Ne plus penser à rien.

Mon chéri vient me rendre visite en fin de journée. Il m’amène une rose. Mille fois merci.
Dès les premiers soupçons de SEP, je me sentis brutalement abandonnée par le bonheur et la foi en l’avenir. Je lui en veux, elle m’a volé l’insouciance de la jeunesse et la liberté qui va avec. Elle s’est envolée et n’est jamais revenue. Je me suis sentie propulsée vers la douleur, enlisée dans des sables mouvants vastes et étendus à perte de vue. Je me suis sentie happée par la violence des symptômes (qui empirent de jour en jour) et des mots employés par le corps médical. C’était tellement à l’inverse de ce que j’avais envie de vivre. Elle m’a touchée au cerveau mais c’est comme si elle m’avait poignardée en plein cœur. Je ne comprenais pas ce qu’il m’arrivait mais je ressentais chaque jour les blessures qu’elle me laissait.

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