La fibromyalgie et l’hiver: parlons-en.

Selon les informations météorologiques arrivant dans mon coin de l’Afrique centrale, les températures de cette semaine sont les plus dures cet hiver, les premières que j’ai découvertes avec la fibromyalgie. Ce n’était pas une sinécure, j’ai fui en janvier dernier, très peur de quitter ma peau, l’hiver et la fibromyalgie ne se mélangent pas.

Voici un texte posté sur mon compte Facebook en novembre dernier sur les manifestations glaciales de la fibromyalgie qui m’ont poussé à aller à l’abri chaud en janvier.

Samedi soir l’envie de faire de la nourriture, pas ces rôtis grillés auxquels je suis habitué, ou ces plats faits maison que je signe depuis plusieurs mois, mais un vrai repas cette fois. Se lever pendant une heure dans la cuisine est absolument impossible, j’ai l’impression que ma colonne vertébrale sort de mon dos à chaque fois. Puis, samedi, armé de courage, j’ai pris la grande décision de prendre un repas. J’ai mis du beurre dans la casserole et j’ai commencé à hacher les oignons. Je n’allais pas très loin dans ma vie, mes mains ne m’obéissaient pas, elles étaient engourdies et douloureuses, le sentiment d’avoir des poids de cinq livres dans chacune d’entre elles.

C’est ainsi que mon aventure culinaire s’est terminée samedi soir.

Dimanche soir je suis allé dîner avec mon amie Martine qui a préparé un délicieux plat du pays. Incapable de finir le morceau qu’elle m’avait servi, j’ai dû mettre les couverts après 3 minutes. Désormais le moment du repas se transforme très vite en torture, les allers-retours du plat à la bouche s’apparentent aux véritables compétitions olympiques. Chaque fois que je finis la moitié de mon assiette, je suis aussi fatigué qu’une personne revenant du Mont Cameroun, je ressens le courage et la puissance d’un athlète à table. Et les conversations? Je ne peux pas dire plus de deux phrases sans faire une pause pour recharger et parfois s’allonger pendant cinq minutes, puis reprendre la conversation où vous l’avez laissé, en bref, si je me souviens bien sûr, parce que les douleurs augmentent et froides des problèmes cognitifs aussi bien. En conséquence, je suis principalement occidental.

Les douleurs augmentent, chaque jour j’ai franchi un nouveau niveau que je ne connaissais pas la veille. Aujourd’hui, je ne peux plus m’asseoir, j’ai des échasses sur le dos, je me sens allongé sur des plaies ouvertes.

Hier soir, je suis allée aux urgences, le dos, les jambes et les bras étaient si douloureux que je ne pouvais pas me tenir en place, et tourner mon appartement comme une lionne en cage m’épuise et me stresse encore plus, je ne peux pas le supporter, couché ou couché, et je ne sais pas quoi faire de mes bras endoloris sur mon corps. Je ne l’ai jamais été si heureux d’avoir Kaba Ngondo dans ma chambre dressing, vous savez que ces types de robes traditionnelles traditionnelles du Cameroun ne mettent sur la tête, parce qu’il ya des jours que je dois me demander de porter un pantalon ou soutien-gorge, de sorte que ça n’arrivera pas. Hier, j’ai été convaincu par mon meilleur ami Joviale d’aller à l’urgence. J’ai appelé un taxi.

Marcher à 20 mètres du parking de la maison, j’ai pensé laisser mon courage!

Je ne pouvais même pas répondre aux questions simples que l’infirmière me posait: «Votre adresse est la rue américaine …? Ton numéro de téléphone 046 …? 3 La douleur m’a rendu amnésique. Tout ce que je pouvais dire était “Fibromyalgia! Fibromyalgie “Une litanie douloureuse. Heureusement, elle a compris l’urgence, cinq minutes plus tard, une infirmière est venue me chercher.

Infirmière: Enlevez votre manteau. 
Moi: Je ne peux pas, s’il vous plaît aidez-moi. 
L’infirmière: Mais vous avez fait un effort!

Donc cette phrase est pleine de jugement que je refuse d’entendre, la raison pour laquelle j’hésite à aller à l’urgence pendant que je souffre le martyre, cette foutue phrase «fais un effort».

Depuis le début de cet hiver je vis à la maison, mes rares sorties sont chez mon médecin généraliste et rhumatologue, j’accepte de ne voir que des personnes “sûres”, qui ne me jugeront pas, qui ne me diront pas “Patricia fait un effort”.

J’ai regardé l’infirmière et je voulais lui dire: “J’ai vécu à Bruxelles pendant un peu plus de 2 ans, je connais la moitié des services de cet hôpital où j’ai été opéré deux fois, je vous guiderai à votre service les yeux fermés! Mais jamais, même dans les terribles moments où l’espoir m’abandonne, je n’ai jamais utilisé d’ambulance, je suis toujours venu en taxi, l’image de moi allongé sur une civière comme une impotente m’a tué, ça reste des miettes de fierté. Cher étranger, je vous demande de m’aider à me déshabiller et vous me demandez de “faire un effort”.
Tout coulait dans ma tête, mais je n’étais pas capable de dire toute la colère qui emplissait mon cœur, je pouvais mendier d’un souffle “Je ne peux pas, s’il te plait” et c’était déjà trop, l’énergie qui me demande de formuler une phrase … Il a enlevé sa veste, a enlevé la tension puis est revenu 5 minutes plus tard pour me demander si c’était mieux … .J’ai demandé ce qui s’était passé depuis son départ il y a 5 minutes. Il est parti sans un mot.
J’arrive donc à la conclusion, peut-être hâtivement, que pour cette infirmière ma maladie serait psychotique, aller à l’hôpital me ferait «aller mieux», c’est juste le syndrome de fibromyalgie, pourquoi en faire un drame, demandai-je ironiquement. Je restais là à attendre le médecin de garde, j’avais tellement froid, une infirmière passait, je lui ai demandé si elle allait me couvrir les jambes avec mon manteau. Elle l’a mis sur ma poitrine et est parti. Descendre à mes jambes m’a demandé un tel effort … J’ai craqué! Les larmes que je retiens depuis le matin ont été libérées, déversant de grosses vagues sur mon visage.
Je suis juste une fibromyalgie, pas handicapée.
Donc, c’est le message implicite chaque fois que je suis allé à l’urgence. C’est dire à quel point cette maladie reste mal comprise et nous sommes doublement blessés car nous sommes déjà prisonniers de notre douleur. Cette nuit-là, j’ai suggéré au médecin de me donner une infusion de morphine directement, il m’a répondu que le tradonal, qui est un dérivé, suffirait. Je l’ai supplié, en expliquant que je venais d’interrompre le tradonal parce que inefficace: “Non Mme Bakalack, pas de morphine pour vous”.
La perfusion a été complétée après 3 heures. J’ai répété au docteur que ce n’était pas assez, je pouvais maintenant utiliser mes mains, mais mon dos et mes jambes étaient toujours si douloureux qu’il est resté sourd à mes demandes. J’ai appelé un taxi et je suis rentré à 2 heures du matin.
Ça fait huit heures et je vais retourner aux urgences.

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