Se você ama alguém com fibromialgia, você saberá que sofremos de dor severa que varia de dia para dia e de hora para hora.

Isso não podemos prever. É por isso que queremos que você entenda que às vezes temos que cancelar as coisas no último momento e isso nos incomoda tanto quanto você.
Queremos que você saiba que temos que aprender a aceitar nosso corpo com suas limitações, e isso não é fácil. Não há cura para a fibromialgia, mas tentamos aliviar os sintomas diariamente. Nós não pedimos para sofrer com isso.
Muitas vezes nos sentimos sobrecarregados e não podemos lidar com mais tensões do que temos. Se possível, não adicione mais tensões ao meu corpo.
Mesmo que pareçamos bem, não nos sentimos bem. Nós aprendemos a viver com dor constante na maioria dos dias. Quando você nos vê feliz, isso não significa necessariamente que não temos dor, simplesmente que estamos lidando com isso. Algumas pessoas pensam que não podemos ser tão ruins se parecermos bons. A dor não é vista. Esta é uma doença crônica “invisível” e não é fácil para nós.

Entenda, por favor, que porque não podemos trabalhar como antes, não é que somos preguiçosos. Nosso cansaço e dor são imprevisíveis e, por isso, temos que fazer ajustes em nosso estilo de vida. Algo que parece simples e fácil de fazer não é para nós e pode nos causar muita fadiga e dor. Não necessariamente algo que fizemos ontem, podemos fazer hoje, mas isso não significa que não seremos capazes de fazê-lo novamente.

Às vezes ficamos deprimidos. Quem não ficaria deprimido com uma dor forte e constante? Verificou-se que a depressão ocorre com a mesma frequência na fibromialgia como em qualquer outra condição de dor crônica. Não nos dá dor para estar deprimido, mas ficamos deprimidos pela dor e incapacidade de fazer o que costumávamos. Também nos sentimos mal quando não há apoio e compreensão dos médicos, familiares e amigos. Por favor, me entenda, com o seu apoio e ajude você a diminuir minha dor.

Embora tenhamos dormido a noite toda, não descansamos o suficiente. Pessoas com fibromialgia têm sono de má qualidade, o que piora a dor em dias que dormem mal.
Para nós, não é fácil ficar na mesma posição (mesmo se você estiver sentado) por muito tempo. Isso nos causa muita dor e leva tempo para se recuperar. Por isso, não vamos a algumas atividades que sabemos que esse fator nos prejudicaria. Às vezes vamos embora, sabemos as conseqüências que isso trará.

Nós não estamos enlouquecendo se às vezes esquecemos coisas simples, o que estávamos dizendo, o nome de alguém ou dizemos a palavra errada. Estes são problemas cognitivos que fazem parte da fibromialgia, especialmente nos dias em que temos muita dor. É algo estranho para você e para mim. Mas vamos rir juntos e nos ajudar a manter nosso senso de humor.

A maioria das pessoas com fibromialgia está mais ciente desta condição do que alguns médicos e outros, porque fomos forçados a nos educar para entender nosso corpo. Então, por favor, se você vai sugerir uma “cura” para mim, não faça isso. Não é porque não aprecio sua ajuda ou não quero melhorar, mas porque me mantenho bem informado e já tentei muitas coisas.

Sentimo-nos muito felizes quando temos um dia com pouca ou nenhuma dor, quando conseguimos dormir bem, quando fazemos algo que não conseguimos há muito tempo, quando nos entendem.

Nós realmente apreciamos tudo o que você fez e pode fazer por mim; incluindo seu esforço para me informar e entender. Pequenas coisas significam muito para mim e eu preciso que você me ajude.

Seja gentil e paciente. Lembre-se que dentro deste corpo, dolorido e cansado, eu ainda estou lá. Estou tentando aprender a viver dia a dia, com minhas novas limitações e manter a esperança no amanhã. Ajude-me a rir e ver as coisas maravilhosas que Deus nos dá.

Obrigado por ler isto e dedicar seu tempo. Talvez de agora em diante você possa me entender melhor. Eu realmente aprecio seu interesse e apoio. “

181 thoughts on “Se você ama alguém com fibromialgia, você saberá que sofremos de dor severa que varia de dia para dia e de hora para hora.

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