FIBROMIALGIA: COMO VIVER COM UMA DOENÇA DA DOR

Um dos maiores desafios da dor crônica é encontrar maneiras de viver com os outros. Às vezes parece melhor e mais confortável para ficar em casa, onde você pode relaxar, cuidar da nossa desconforto, fazer as coisas à nossa discrição e controlar o nosso ambiente.
Isso nos livra de ter que explicar, se desculpar, para parecer estranho, ou se sentir culpado sobre o que não podemos realizar. para impor nossos corpos pessoa torturada é evitado.
Esta fantasia, no entanto, tem grandes defeitos! O que de obter uma vida! Normalmente vivo envolve uma variedade de tarefas, experiências sociais e viagens que nos fazem sair do nosso ninho confortável que estamos tentando construir, e nos colocou em contato com o mundo exterior. O que significaria para largar tudo? Sem doença crônica, muito poucos que iria considerar uma vida de eremita atraente, mesmo marginal. Agora, somos levados a encontrar maneiras de manter nossos relacionamentos – preciosas – sem desconforto.
Em um aperto de mão para um novo colega ou uma longa viagem para visitar a família, estamos em luta constante para reduzir o stress físico sem outros ennnuyer ou atrair a atenção para a nossa doença. Esses fatores são importantes em interações com o nosso conhecimento, bem como com trocas diárias com nossos entes queridos. Encontrar maneiras de expressar as nossas necessidades especiais requerem negociações específicas em cada situação.
A maioria das pessoas quer ser cuidada por eles quando sentir-se mal. Pessoas com problemas crônicos, no entanto, parecem sempre precisa. Isso pode ser difícil para todos os envolvidos. Este artigo aborda como diferenciar entre jogar o papel de um mártir ou uma bruxa – esse é o desafio.
 
Eliminar o que não é importante
Primeira regra: eliminar qualquer atividade que não é importante para você e que não requer a sua participação. Embora estamos doentes “o tempo todo”, não há nada de errado em dizer não a convites por razões de saúde. Um “obrigado pelo convite, mas eu não me sinto suficientemente bom” deve ser suficiente. Pessoas cancellent por muitas razões. dor excessiva e fadiga
são motivos suficientes!
Temos bastante dor, sem acrescentar em lidar com pessoas ou atividades irritantes? Reduzir o contato com indivíduos que você drenam em vez de adicionar o divertimento a sua vida. Pense em você como um brâmane: use sua energia preciosa apenas para tarefas importantes. Mantenha suas prioridades. Quando possível, eliminar a variedade de atividades “Eu deveria …” e substituir com a variedade “Eu quero …” Muitas vezes é melhor pagar alguém para tarefas extenuantes, tais como limpeza e manutenção para o mercado, para ser livre a atividades mais satisfatórios.
Limitar o seu envolvimento
Quand vous ne pouvez pas dire  “non”, limitez le temps consacré à des tâches fatiguantes.  Si vous devez assister à des engagements sociaux ou reliés à votre travail, faites à ce que vous arrivez en retard et partez tôt.  L’évènement sera plus plaisant, et personne va s’en apercevoir.
Arrivez préparé(e)
Pour les activités que nous choisssons faire, il y a des moyens pour les rendre moins stressantes et plus agréables.  Soyez toujours un bon scout.  Remplissez votre auto ou valise avec des articles de confort.  Médication additionnelle, des compresses pour la chaleur, des oreillers, des sous-vêtements d’hiver, des boules ou bouchons pour les oreilles, et des lunettes de soleil, tous pouvant être des vrais articles de sauvetage.  Une fois que vous déterminez ce qui est efficace pour vous, gardez une liste prête à consulter lorsque vous vous préparez à sortir.  Pensez aux conditions de l’endroit qui vous attend.  Quelle est la température ?  Est-ce que les sièges sont confortables ?  Comment est l’éclairage ? Appelez avant de partir pour vous informer de l’environnement et si vous devez faire des arrangements.
Communiquer clairement
Pourquoi cela est-il si difficile ?  Nous devons exprimer nos besoins à d’autres de façon simple, directe et polie.  Souvent les  gens qui nous sont proches veulent aider mais ne savent pas quoi faire.  Cependant, demander de l’aide n’est pas naturel.  En demandant, nous concédons la faiblesse et la dépendance.  Alors le malaise physique n’est pas le seul facteur dans une décision de rechercher de l’aide ou un traitement spécial.  Comme je le vois, non seulement nous souffrons de malaise physique, mais nous pleurons pour les choses que nous ne pouvons plus faire, et nous craignons d’être différents et d’attirer  l’attention parce que nous ne pouvons plus continuer avec les autres.
Pour ces raisons, on doit peser l’importance de demander de l’aide.  Dans certaines circonstances, “se faire passer pour normal” se traduit par un certain degré de douleur.  Cela dépend sur des choses comme nos plans pour le reste de la journée, l’intimité de ceux qui sont à nos côtés, leur disposition  et connaissance de notre condition, et notre estimation des répercussions.
Les préférences versus les besoins
Beaucoup de personnes ont des préférences puissantes.  Avec nous, cependant, nos “préférences” sont souvent des “besoins” qui, si non comblés, nous coûtent cher.  La douleur ou fatigue subitement déclanchée est effrayante et parfois embarrassante, assez pour nous faire penser que l’on aurait été mieux de demeurer à la maison.
Parce que plusieurs aspects des interactions quotidiennes crée des difficultés additionnelles pour nous, il est complètement raisonnable d’essayer d’influencer l’environnement pour mieux nous accommoder.  Quand il s’agit de douleur, nous n’avons pas juste à faire face à des “préférences”.  Nous aurions probablement partagé les préférences des autres (pour des longues marches, randonnées en décapotable, etc…) si notre condition physique n’avait pas changé ces évènements joyeux pour des souffrances.
Identification de nos besoins
Sur un niveau pratique, sachez ce dont vous avez besoin — le genre de chaise, l’éclairage, la température, les périodes de repos, les niveaux de bruit — pour être le plus confortable.  Cela rend les choses plus faciles pour vous et ceux qui veulent vous donner un coup de main.  Malgré que la variété de choses qui nous affectent deviennent intuitives pour nous, ils paraissent plutôt un étrange assortiment de facteurs pour les autres.  Aidez-les en étant très clair sur ce qui est le plus difficile et le plus efficace pour vous.  Soyez simple : “J’ai beaucoup de trouble avec _____, ça serait super si vous pouviez _____.  Est-ce que ça va être un problème ?”
Sur-indentification (trop de sympathie)
Parfois nos proches ont la plus grande difficulté à faire face à nos incapacités.  Notre souffrance est pire sur ceux qui nous sont chers.  Pour eux, nos difficultés deviennent les leurs, parfois causant des réactions psychosomatiques, ou compréhensives.  En voulant partager toutes nos expériences avec eux, pensez à l’effet que cela pourrait avoir.  Quelle serait votre réaction si votre partenaire ou enfant souffrait constamment ?  Comme nous souhaitons un répis de nos symptômes, notre famille et nos amis ont besoin de ne pas y penser tout le temps.  Ceci ne signifie pas que nous devrions être des martyrs ; votre but doit être de créer un équilibre entre partager nos problèmes et penser à d’autre chose.  Alors assurez-vous d’introduire des sujets de conversation différents de votre maladie.  La distraction peut être très avantageuse.
Le rejet
Certaines personnes près de nous peuvent être réticents à offrir de l’aide parce qu’ils ne veulent pas accepter que nous avons un “vrai problème”.  Certains peuvent être sceptiques parce qu’il n’y a pas d’indicateurs “objectifs” de notre maladie ; la communauté médicale est quelque peu incrédule.  Pour ces gens, l’éducation est la clé.  La littérature déborde sur plusieurs aspects de la fibromyalgie, des symptômes, stratégies pour la combattre, et il y a de l’aide pour les familles et les proches.
À cause de la grande variété de nos symptômes et besoins, une approche est d’admettre que notre condition est plutôt bizarre.  En faisant une demande, vous pourrez dire, par exemple, “je sais que ça peut paraître étrange, mais le bruit de votre auto avec la vitre baissée me cause de la tension dans mes muscles ce qui me cause une douleur intolérable”.
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